Would love some encouragement/tough love/a kick in the butt & your thoughts, plz.

[joplin1975]

(I don't know if this is the right place to put this...but here it is.)

Ok, so review the tape:
TT due to cancer (8/29), followed by RAI (9/23).
TSH prior to RAI was 71.17.
Endo is managing post-TT/RAI replacement dosage and told me upfront that she believes in slowly upping the dosage, that it would be a lengthy process, and that she does understand the ultimate goal is a suppressed TSH.

So my starting dose is 50 mcgs. Endo also indicated to me that she prefers to increase at 25 mcg increments. My next blood work is scheduled for 11/8 (TSH and Free T4 & T3). My expectation is that she'll bump me up to 75 mcgs, but that remains to be seen.

So with that background, I have to admit I'm kind of having trouble keeping my chin up and not feeling really discouraged. I've always been a very active person (paid for college on a DI soccer scholarship, life-long long distance runner, ride & train horses daily, etc) and at this point, on this dosage, I simply can't do the things I want (and, honestly, from a mental/emotional perspective, NEED) to do. I can only walk now, no running. There's just not enough gas in the tank. Last week, I wanted to walk everyday and crashed hard -- migraine-like headache that left me vomiting -- so now I'm only walking every other day and doing yoga on my days "off."

I only have enough energy to ride once a week. Last week I tried to hop on one of my greenies to do a little work and quickly realized that my strength was such that I was putting myself in a really dangerous position. I got off and just felt so discouraged. If I sit on the couch all day long and do basically nothing, I feel fine. But that's not me and not how I like to live...I feel like I've lost a big part of "me."

I may not be articulating this well enough...because when I do nothing and I do feel fine, I actually should say I feel better than I have in a LONG time and I am aware of all the little symptoms I ignored for so many years. So that's the good. But the bad is that I want to feel good while doing what I love to do and that's just not possible at this point. Which is terribly discouraging. I could handle it for the first few weeks, but now it's just getting old and, frankly, it's ****ing me right the heck off.

And then there's the 13 pounds I've put on...*sigh* So I feel terribly ugly too. I'm on weight watchers, don't consume more than 1300 calories a day, but the weight keeps stacking on. I'm short, so looks exaggerated, too.

I feel like I've got the proverbial devil and angel sitting on either shoulder...and despite knowing this the endo wanted this to be a slow process and despite knowing that we will get there at some point...the little devil is whispering in my ear to ask (with lots of sweetness and sugar on top, of course) the endo to maybe bump me up to 100 mcgs instead of 75 mcgs (assuming that's how things shake out).

I'm looking for the more rationally-minded to either kick me in the butt and tell me to suck it up and deal...or, if you think 100 mcgs might be within the realm of reason-ability, I'm open to hearing that too! Thoughts?

[desrtbloom]

Good Morning Hon!

First - BIG :hugs:

I am happy to give you some encouragement! You just went through a major surgery for cancer. Be kind and patient with yourself and your body. You are a survivor! Thyroid disease and cancer is a journey, not a race. Unfortunately, it takes time - lots of time. Thyroid disease affects every single cell of your body, so what you are going through is "normal" and once your levels get regulated and stabilized it does get better, but again it takes time and there is no way to rush it.

I can relate to everything you are going through and feeling. It is scary to see your your body change and to feel so poorly for long periods of time. However, in time you WILL feel better. In the meantime, don't beat yourself up. The thyroid disease is doing that for you. Try and stay positive and realize that this is temporary and that it DOES get better.

So please try and be kind to yourself and rest and allow your body to heal. I'm very sorry you are going through all of this as I know how discouraging it can be, but try and focus on the positives that you are cancer free, that you feel so much better than you did for a long time and that there is hope for a bright future.

Prayers being sent your way.

Patti

[katbid23]

Wow! I feel bad for you. Not sure I understand the gradual increase on the meds. I started out at 125 the day after my TT (due to cancer) and on my first visit post surgery the endo bumped me to 150. I don't think you are being unreasonable at all for asking for an increase of more than 25. I totally understand how you feel and I know it is aweful. I only went hypo for a couple days because I just couldn't take it and I thought I was going to go crazy. It's like you have all these thoughts of what you want and need to be doing. However, just the thought of all those things will exhaust you without even moving a muscle. I think I would talk to your endo and ask for the reason behind the slow increase of meds. You have a right to know. I am also short and gaining 10 pounds looks like about 40. I am 5'3 and usually weigh around 140 but I am at 160 right now and have been since after the TT.
Good luck and I really hope your dr increases you to at least a 100 if not 125.

[joplin1975]

Wow! I feel bad for you. Not sure I understand the gradual increase on the meds. I started out at 125 the day after my TT (due to cancer) and on my first visit post surgery the endo bumped me to 150. I don't think you are being unreasonable at all for asking for an increase of more than 25. I totally understand how you feel and I know it is aweful. I only went hypo for a couple days because I just couldn't take it and I thought I was going to go crazy. It's like you have all these thoughts of what you want and need to be doing. However, just the thought of all those things will exhaust you without even moving a muscle. I think I would talk to your endo and ask for the reason behind the slow increase of meds. You have a right to know. I am also short and gaining 10 pounds looks like about 40. I am 5'3 and usually weigh around 140 but I am at 160 right now and have been since after the TT.
Good luck and I really hope your dr increases you to at least a 100 if not 125.

Sorry, I should have clarified that I never went on meds after surgery. The thought was to go hypo as soon as possible after surgery, so I could so the RAI as soon as possible. Also of note, I am an idiot and re-roofed the house 10 days after surgery. The TSH goal pre-RAI was 40 and because I did not take it easy, it went up to 71.17. The endo said because it was so high, if she put me on a near-normal dose of synthroid right away the "TSH hangover" would be atrocious. Also, I was on synthroid for a short time before my surgery and experienced sensitivity to it (anxiety and heart palps)...enod noted that heart palps lead to aterial hardening, so she liked to avoid that as much as possible.

ETA: she also believes correcting an undermedication problem is always easier than correcting an overmedication problem. So she doesn't want to overshoot, then scale back. Hence the slow titration.

[SnoodMama]

Well, it sounds like the doctor has really good reasons for doing what she is doing. Problem is, you feel like crap and there really is no way around it. It sounds like you kind of know this since you mentioned the "kick in the butt". I know that whenever I think "OK, I'm going to be patient with this, I know it will take a long time, etc...." the actual reality of it totally SUCKS. You can't do what you enjoy, you feel miserable, your emotions are probably not all that easily controlled. You are just in a sucky situation and there's nothing you can do except wait it out. Or try to find things you enjoy doing within your limitations.

Anyway, you WILL get back to where you want to be. You will get better. You just have to find a way to find some enjoyment in your current situation and take it just one day at a time (to be very cliche). Maybe try sitting outside by the horses. Taking care of the horses in another way. Doing slower walks with the horses instead of your usual rides. And then gradually, a little bit each day you can get back to doing what you used to be able to do and along the way you may even discover some things you didn't even know you enjoyed doing. This one Catholic priest who has a TV show on EWTN got hit by a car and nearly died. He had a long, long, long road to recovery. He said that each morning you wake up and you assess your situation and you think "OK, what can I do? Ok, let's do that." For him some days it was just trying to move his finger. But now he's walking. And I'm sure he needed lots and lots of pep talks and prayers along the way. Everyone does. So, just wake up and do what you can do.

I hope I haven't depressed you further. hugs6

[SnoodMama]

Oh, and I'm glad you stopped yourself and realized you were putting yourself in a dangerous situation because the last thing you need is to have to recover from broken bones amidst all this!!!

[Octavia]

Disclaimer: This is based on one person's experience (mine). I'm not going to tell you to suck it up, because I don't believe that's the solution. I somewhat understand why your doctor wants to go a bit slow, but jeez...this is abusively slow!

I know replacement doses are not based on size and weight, but I have to believe that size is figured into the mix at least somewhat. Based on your comment about being on Weight Watchers, I'll assume you are of at least average size/weight. I am 5'5", weight 125, and I take 150 mcg.

My surgery/dosage/timeline went something like this: immediately after my completion thyroidectomy, they started me on 125 mcg, knowing that it was only temporary, as I would have to stop taking it within a few weeks to prepare for my RAI (when my TSH shot up to 103). After my RAI, they put me on 150 mcg as my "real" starting dose, with instructions to get labwork done in 6 weeks. I had no "TSH hangover." That 6-week labwork showed TSH at .03, which they were happy with, so I've been on 150 ever since, and I feel good--working full-time (40 to 60 hours/week), exercising, taking care of house, etc., doing everything I need & want to do. One key ingredient where we might be different is that my levels were normal prior to my surgeries. Were yours? If they were, then what's the holdup?

The weight gain is frustrating, I know! I gained 10 pounds during the 3 weeks I was off meds, and it's taken me 3 months to lose 5 of those pounds.

I do not think you would be unreasonable to ask for a SIGNIFICANT increase in your dosage. May the force be with you! hugs4

[Andros]

(I don't know if this is the right place to put this...but here it is.)

Ok, so review the tape:
TT due to cancer (8/29), followed by RAI (9/23).
TSH prior to RAI was 71.17.
Endo is managing post-TT/RAI replacement dosage and told me upfront that she believes in slowly upping the dosage, that it would be a lengthy process, and that she does understand the ultimate goal is a suppressed TSH.

So my starting dose is 50 mcgs. Endo also indicated to me that she prefers to increase at 25 mcg increments. My next blood work is scheduled for 11/8 (TSH and Free T4 & T3). My expectation is that she'll bump me up to 75 mcgs, but that remains to be seen.

So with that background, I have to admit I'm kind of having trouble keeping my chin up and not feeling really discouraged. I've always been a very active person (paid for college on a DI soccer scholarship, life-long long distance runner, ride & train horses daily, etc) and at this point, on this dosage, I simply can't do the things I want (and, honestly, from a mental/emotional perspective, NEED) to do. I can only walk now, no running. There's just not enough gas in the tank. Last week, I wanted to walk everyday and crashed hard -- migraine-like headache that left me vomiting -- so now I'm only walking every other day and doing yoga on my days "off."

I only have enough energy to ride once a week. Last week I tried to hop on one of my greenies to do a little work and quickly realized that my strength was such that I was putting myself in a really dangerous position. I got off and just felt so discouraged. If I sit on the couch all day long and do basically nothing, I feel fine. But that's not me and not how I like to live...I feel like I've lost a big part of "me."

I may not be articulating this well enough...because when I do nothing and I do feel fine, I actually should say I feel better than I have in a LONG time and I am aware of all the little symptoms I ignored for so many years. So that's the good. But the bad is that I want to feel good while doing what I love to do and that's just not possible at this point. Which is terribly discouraging. I could handle it for the first few weeks, but now it's just getting old and, frankly, it's ****ing me right the heck off.

And then there's the 13 pounds I've put on...*sigh* So I feel terribly ugly too. I'm on weight watchers, don't consume more than 1300 calories a day, but the weight keeps stacking on. I'm short, so looks exaggerated, too.

I feel like I've got the proverbial devil and angel sitting on either shoulder...and despite knowing this the endo wanted this to be a slow process and despite knowing that we will get there at some point...the little devil is whispering in my ear to ask (with lots of sweetness and sugar on top, of course) the endo to maybe bump me up to 100 mcgs instead of 75 mcgs (assuming that's how things shake out).

I'm looking for the more rationally-minded to either kick me in the butt and tell me to suck it up and deal...or, if you think 100 mcgs might be within the realm of reason-ability, I'm open to hearing that too! Thoughts?

It is my humble opinion that you are being an impatient patient. It takes a good 18 months to fully recover from what you have been through. If you keep pushing, it will take longer.

I know how you feel because I am a very very active outdoorsy sort of woman myself but I did have to take my own advice and I am sure glad I did because today I am a 68 year old "mean machine" , I kid you not.

Would never tell anyone to suck it up for heavens' sakes. We love you, G.F.!!!

http://img.photobucket.com/albums/v129/LuLu1471/hug-3.jpg

PS: I did have to learn that I cannot control all aspects of my life all the time. But I still try. Ha, ha!

[SnoodMama]

I feel bad if I sounded like I was telling you to "suck it up". LOL. But, I may very well have been because I was kind of in a "suck it up" mood after spending all morning trying to get my daughter to stop crying at school drop off. But, I think I need to save that topic for a different discussion board!!!! I was trying to be hard-as-nails Mommy. Maybe it was the thyroid biatch coming out. LOL. I told you I was bad in the morning.

[webster2]

I am really sorry you are feeling like this. I am too. I feel great the less I do. I walk my dog, and that's about it. I have yet to work a full day, up to 6 hours, and need to crash when I get home. And, I am a librarian..how hard is that?

I understand your impatience. It is really hard to want to do our normal things and not be able to. I have to tell myself, this thyroid thing is not a sprint..it is a marathon that will apparently be a life long battle at times. But, you know what...life is in that phrase. Let's hang on to the fact that we have our lives. Cancer can sometimes take that away. We're survivors. We may be a little bedraggled right now, just give us some time, and we'll be stronger than before. You know the old adage, "what doesn't kill us makes us stronger". That has to apply to us.

So, no tough love, or kick in the butt here. How 'bout a cry in the beer commiseration to let you know you are not alone, and we won't be like this forever.

[joplin1975]

Thanks all. I really appreciate all your thoughts. And no worries about sounding stern and/or not sympathetic...I do have thick skin...and perhaps a thick skull too. :)

So please try and be kind to yourself and rest and allow your body to heal. I'm very sorry you are going through all of this as I know how discouraging it can be, but try and focus on the positives that you are cancer free, that you feel so much better than you did for a long time and that there is hope for a bright future.


Thank you...just wishing that future was a litttttttttttle closer. :)

Maybe try sitting outside by the horses. Taking care of the horses in another way. Doing slower walks with the horses instead of your usual rides.

I have my two retirees at home, both of whom I adore and who I take care of each morning and night. The problem is my two two years who I have boarded at my trainers. I was going to work them this winter, decide which one I wanted to keep as my new show horse, and then sell the other one (to a great home, of course). It's always a crap shoot, because you never know if the baby horses can handle "show work"...but I never expected that I'd be the problem. You can't really take nice calm walks on unbroke horses and I'm having to pay my trainer to work them for me. I'm losing gobs of money and think I'm going to have to sell them both, which is just so sad...I like them both and had high hopes that one would be my new show pony for the 2012 show season...but I'm thinking I won't have a 2012 show season. Not to mention the rprocess of selling and/or funding a new horse is just emotional. I get attached to these guys.

Were yours? If they were, then what's the holdup?

TSH was slightly elevated (subclinical), but free t3 & t4s were within range. Last time I saw her she offered to give me some "light reading" (journal articles) that supported her method, but at the time I was all "no, that's fine I trust you" and declined. Now I'm kicking myself because I really need some kind of rational explanation to get me through this.

It is my humble opinion that you are being an impatient patient. It takes a good 18 months to fully recover from what you have been through. If you keep pushing, it will take longer.

:) Thank you! I know you support my endo's method and I do appreciate your feedback as I respect your opinion. Eeeeeeeeeeek, 18 months...*deep breaths*

Maybe it was the thyroid biatch coming out. LOL. I told you I was bad in the morning.

HAHAH. Lawsy, if you think that was witchy, maybe I *DO* have more moments than I 'fessed up to, cuz that ain't nothin'! :)

So, no tough love, or kick in the butt here. How 'bout a cry in the beer commiseration to let you know you are not alone, and we won't be like this forever.

Misery loves company, right? :)

***
This is all likely underscored by an interaction I had with a...friend of a friend. She had a TT due to Grave's a month *after* my TT. Same surgeon, same endo. She's...not someone I particularly like, if I'm honest, but we're civil toward each other. After her TT, she cried and cried and cried and said how awfully painful the whole process was and couldn't believe I thought it was easy. She carried on so much that they gave her lots of pain meds. As far as I know, she spent her recovery gleefully popping Lortabs with a wine chaser.

Anyway, she said she's on 150 mcgs, started the day after surgery, and that she feels great. So I was all "GREAT. Here I am...virtually no pains meds after surgery, taking great pains to eat carefully and plan my meals out, I've stopped drinking, and I'm trying like hell to do everything right and be very conscious of my health and *I* get the rock uber-low synthroid dosage and fatter by the day while the drug addled Barbie get her full dose, is living her life totally normally, and remains obnoxiously perky, skinny and gorgeous."

Oh, and, by the way, say hello to my inner-three year old, folks. :tongue0015:

[Andros]

Thanks all. I really appreciate all your thoughts. And no worries about sounding stern and/or not sympathetic...I do have thick skin...and perhaps a thick skull too. :)



Thank you...just wishing that future was a litttttttttttle closer. :)



I have my two retirees at home, both of whom I adore and who I take care of each morning and night. The problem is my two two years who I have boarded at my trainers. I was going to work them this winter, decide which one I wanted to keep as my new show horse, and then sell the other one (to a great home, of course). It's always a crap shoot, because you never know if the baby horses can handle "show work"...but I never expected that I'd be the problem. You can't really take nice calm walks on unbroke horses and I'm having to pay my trainer to work them for me. I'm losing gobs of money and think I'm going to have to sell them both, which is just so sad...I like them both and had high hopes that one would be my new show pony for the 2012 show season...but I'm thinking I won't have a 2012 show season. Not to mention the rprocess of selling and/or funding a new horse is just emotional. I get attached to these guys.


TSH was slightly elevated (subclinical), but free t3 & t4s were within range. Last time I saw her she offered to give me some "light reading" (journal articles) that supported her method, but at the time I was all "no, that's fine I trust you" and declined. Now I'm kicking myself because I really need some kind of rational explanation to get me through this.


:) Thank you! I know you support my endo's method and I do appreciate your feedback as I respect your opinion. Eeeeeeeeeeek, 18 months...*deep breaths*



HAHAH. Lawsy, if you think that was witchy, maybe I *DO* have more moments than I 'fessed up to, cuz that ain't nothin'! :)


Misery loves company, right? :)

***
This is all likely underscored by an interaction I had with a...friend of a friend. She had a TT due to Grave's a month *after* my TT. Same surgeon, same endo. She's...not someone I particularly like, if I'm honest, but we're civil toward each other. After her TT, she cried and cried and cried and said how awfully painful the whole process was and couldn't believe I thought it was easy. She carried on so much that they gave her lots of pain meds. As far as I know, she spent her recovery gleefully popping Lortabs with a wine chaser.

Anyway, she said she's on 150 mcgs, started the day after surgery, and that she feels great. So I was all "GREAT. Here I am...virtually no pains meds after surgery, taking great pains to eat carefully and plan my meals out, I've stopped drinking, and I'm trying like hell to do everything right and be very conscious of my health and *I* get the rock uber-low synthroid dosage and fatter by the day while the drug addled Barbie get her full dose, is living her life totally normally, and remains obnoxiously perky, skinny and gorgeous."

Oh, and, by the way, say hello to my inner-three year old, folks. :tongue0015:

No two persons are the same and I know for a fact no 2 outcomes are the same. You stay the course; you will be the winner. You will see. I know you would not want to be her. There is more there than meets the eye; she could be taking phen phen or something.

When are you turning 4? Ha, ha!

[webster2]

I agree, no two outcomes are alike. I might be stretching it a bit, but would guess she is also on something else, JMHO. I think you are doing all the right things, and it will work out. We're the tortoises, and things will be fine. Doesn't 18 months ago seem like not that long ago?

I happen to adore 3 & 4 year olds! They say and do the most amusing things, usually painfully truthful too! :)

Sorry about the horse situation, that's really hard.

BTW, I still have doctor envy. I think you have a top notch doc. I started out on 125mcg, and still don't feel, or look like Barbie the beeotch! Can't say I want to, and really don't think that's your goal either? Hang in there, better days are coming!

[joplin1975]

BTW, I still have doctor envy. I think you have a top notch doc. I started out on 125mcg, and still don't feel, or look like Barbie the beeotch! Can't say I want to, and really don't think that's your goal either? Hang in there, better days are coming!

I'm sorry you are still not feeling 100%, webster. It's tough. You're right...I do think in my gut she's a good doctor. I know she's a good person/human - if that makes any sense? I mean, she spends at least an hour with each patient and really does care. It's just trying to hold on to that trust when you aren't feeling great that's tough.

When are you turning 4? Ha, ha!
When I get done kicking stones and pouting? :-) Heck, maybe I already had that birthday, considering I didn't even say that I sort of kind of wished one of Annoyingly Thin & Perky's breast implants would spontaneously rupture during surgery. Oh, whoops...that kinda just slipped out...:winking0051:

[webster2]

BAAAAHAHHAHAHAHAHA! There's the right attitude!

[SnoodMama]

So why did she give Barbie the 150 micrograms? Skinny Barbie and her implants and ample synthroid would irritate me too. I got 125 micrograms though and I'm putting on about 2 lbs a freaking week. I'm not eating well though. I'm very, very, very hungry and finding it hard to stay under 2000 calories a day which is what I'm trying to do yet never succeeding.

Maybe you could ask your doctor to up the frequency of your blood tests just a wee bit.

I'm so sorry about your horses and the upcoming season and everything. That totally sucks. I'm in the middle of my tennis season now and went back for my first match this week. After the warm-up I felt done and spent and ready to go sit in a chair. It is doubles tennis so less strenuous than singles. I couldn't play singles now given how I feel. But I lost the tennis match. We did well at the start and then started losing and I think part of it was me tiring out at the end of the first set. I also have this new tendonitis in my foot and am worrying that it could be related to the thyroid stuff. I like to blame everything on that little gland and those stupid hormones that seem to control the entire world in one little drop.

Ok. Must get back to work. Just commiserating with ya! Crying in the beer with ya.

Let's go get Barbie and rough her up a bit. Just kidding.

[Andros]

I'm sorry you are still not feeling 100%, webster. It's tough. You're right...I do think in my gut she's a good doctor. I know she's a good person/human - if that makes any sense? I mean, she spends at least an hour with each patient and really does care. It's just trying to hold on to that trust when you aren't feeling great that's tough.


When I get done kicking stones and pouting? :-) Heck, maybe I already had that birthday, considering I didn't even say that I sort of kind of wished one of Annoyingly Thin & Perky's breast implants would spontaneously rupture during surgery. Oh, whoops...that kinda just slipped out...:winking0051:

ROLF!!! You can be sure of one thing; you wouldn't want her life. I don't even have to be there to know that.

http://img.photobucket.com/albums/v129/LuLu1471/hugs-17.jpg

[I DClaire]

Here I am...virtually no pains meds after surgery, taking great pains to eat carefully and plan my meals out, I've stopped drinking, and I'm trying like hell to do everything right and be very conscious of my health and *I* get the rock uber-low synthroid dosage and fatter by the day while the drug addled Barbie get her full dose, is living her life totally normally, and remains obnoxiously perky, skinny and gorgeous."



I'll be danged! Barbie is my next door neighbor!! Perky, skinny, gorgeous, more energy than a locomotive - taking what sounds like outlandish amounts of Synthroid...but what do I know? My friend never gives me a straight answer when I ask who treats her or how she gets so much Synthroid.

For whatever it's worth, I was told after TT the initial dose of Synthroid (unless there are other considerations) is based on a patient's weight. I started with 125 mg. Is Barbie like, you know, big boned???

[joplin1975]

I'll be danged! Barbie is my next door neighbor!! Perky, skinny, gorgeous, more energy than a locomotive - taking what sounds like outlandish amounts of Synthroid...but what do I know? My friend never gives me a straight answer when I ask who treats her or how she gets so much Synthroid.

For whatever it's worth, I was told after TT the initial dose of Synthroid (unless there are other considerations) is based on a patient's weight. I started with 125 mg. Is Barbie like, you know, big boned???


HAHAHAHAHA!

No, Barbie is obnoxiously skinny. I had to stand next to her in a wedding two years ago -- when I would say I looked good -- and in the pictures I look like a walking bean bag next to her. She's taller than my husband (who is also short) so let's say a little taller than 5'9" and wears a size two.

[I DClaire]

HAHAHAHAHA!

No, Barbie is obnoxiously skinny. I had to stand next to her in a wedding two years ago -- when I would say I looked good -- and in the pictures I look like a walking bean bag next to her. She's taller than my husband (who is also short) so let's say a little taller than 5'9" and wears a size two.

Yep! I feel like a shabbily dressed grand piano standing next to my neighbor.

[SnoodMama]

How's it going, Joplin? How are you feeling? Did you decide to talk to your doctor and ask about speeding up the process a wee bit? Or maybe you could ask her for those scientific papers after all. When is your next blood test?

[joplin1975]

How's it going, Joplin? How are you feeling? Did you decide to talk to your doctor and ask about speeding up the process a wee bit? Or maybe you could ask her for those scientific papers after all. When is your next blood test?

Thanks for checking in. :)

It's...going. How's that for an answer?! Doing a little better this week as opposed to last week. I think (and this may sound nuts, but just nod and smile) it may have been because I was taking some sample Synthroid and I realized this weekend the samples had expired a few months ago. Who knows if it really made a difference or not, but I certainly felt better once I switched back to my pharmacy distributed Synthroid. I still feel hypo/under-medicated, but better.

I didn't call my doctor simply because while I normally have a flexible work schedule, I was swamped last week and wouldn't be able to get to her office (an hour away...and I know, I could call, but if I call and say I feel awful, she'll want me to come in). I leave tonight for a whirlwind week-long business trip...and next Tuesday is my blood draw. So, if I can just hang on a week longer, it'll be the full six weeks and we can assess the situation on Wednesday the 9th.

Also, I have my final follow up with my surgeon on the 15th. While he and my endo have a good working relationship, I know he likes to see the TSH suppressed quickly to minimize cancer re-growth. In short, I thought I'd see what my endo does about medication re-adjustment next Wednesday and then ask my surgeon for his opinion on the matter the following week. If he's concerned, he will certainly call my endo and discuss.

It also helps that, while I've been pinching pennies to save $$ for my horses, I finally broke down and bought some pants that now fit. It's been better than sitting in my office all day long, praying my button doesn't pop off while sucking in my gut all day long. :o Not crazy about the increase in size, but it is what it is...

[Octavia]

Glad to hear you're at least able to function somewhat. I hope next week's labs lead to a significant change in your meds, or at least that the two doctors arm wrestle and you win! :)

You'll be able to lose those extra pounds once you get your levels straightened out. It will take some effort, but you can do it!

[webster2]

Yup, I think there is a lot of nodding & smiling going around. Kind of makes you wonder how many undiagnosed folks might be out there. We are fortunate our thyroid problems were caught when they were. Now, just to get the medication correct, doesn't seem like too much to ask....does it?!!?!?!

I bought bigger britches too, feels much better..probably could interest some business in new billboard space but, breathing easier is great! Also, V neck tops are all I seem to be able to tolerate. I am a big fan of turtlenecks in the winter but...I'll figure something out!

I hope your business trip won't be too tiring, and that you'll be able to rest as needed. I hope it is somewhere exciting!

Best wishes for your appointments when you return, hoping for good news for you! The 10th is my second blood draw, 15th is the eyeball doc, and the 17th is the endo. I believe others will have testing done around then too, so we'll have lots to 'talk" about. I know all of us must have had other things to occupy our time before all of these appointments became sort of a routine in our lives...

Keep on keeping on! ;)

[I DClaire]

Also, V neck tops are all I seem to be able to tolerate. I am a big fan of turtlenecks in the winter but...I'll figure something out!



I bought the absolutely most comfortable faux-turtlenecks at Kohl's, if you have a store near you. They're cotton with a hint of spandex BUT the necks do not fit tightly, they're perfect. I bought pale pink/peach, turquoise, black and white - and I wear one or another almost every day! I paid a little over $10 each for them on sale.

I've had my mother at a doctor's office since early this morning and my throat/neck has been hurting like the devil! I've cleared my throat a million times and it hurts everytime I do. I could not imagine what was suddenly so wrong - and then when I got home I remembered having a really hard time swallowing a big, hard, bullet-size "soft gel" vitamin this morning. Instantly I knew where the pain had come from.

I really do recommend these shirts from Kohl's. They're not heavy but will be perfect under flannel shirts a little later on.
http://www.kohls.com/kohlsStore/landingpages/croftbarrow/womens16w24w/PRD~847908/Croft+and+Barrow+Solid+Mockneck+Top++Womens+Plus.j sp

[Wingman]

Saw your post when looking for other information. By now I hope you've had an adjustment in your Synthroid dose and are feeling much better. If not, I would strongly recommend that you get a second opinion, because you don't have to feel this bad.

My husband has been battling thyroid cancer since 2007, and I have Hashimoto's. Between the two of us we've experienced a lot of thyroid-related symptoms and treatment. Being even a little hypo is miserable, and IMHO you've been that way for way too long.

I can see starting low if you have some thyroid function. But starting at 50 when you don't have a thyroid gland seems much too conservative when it has that kind of effect on your life. With a functioning thyroid, I started at 75mcg, went down to 50 and am now happy at 37.5. If you're too high, you know it. Large muscles (quads) feel weak, and small efforts - like climbing stairs - make you hot and bothered. So if you keep track of how you feel, you can make adjustments immediately. I play tennis, work out and hike without any trouble.

My husband started at 150 mcg after his thyroidectomy and has been stable and comfortable at 175. His doctors wanted him on the high side to suppress the TSH so any leftover thyroid cells would grow slowly, if at all. He also plays tennis, goes hiking and bikes.

At this point I don't see much benefit to moving slowly. Every case is different, of course, but if you aren't comfortable yet, please get that second opinion.

Let us know what has happened and how you are feeling.

[I DClaire]

Yup, I think there is a lot of nodding & smiling going around. Kind of makes you wonder how many undiagnosed folks might be out there. We are fortunate our thyroid problems were caught when they were. Now, just to get the medication correct, doesn't seem like too much to ask....does it?!!?!?!

I bought bigger britches too, feels much better..probably could interest some business in new billboard space but, breathing easier is great! Also, V neck tops are all I seem to be able to tolerate. I am a big fan of turtlenecks in the winter but...I'll figure something out!

I hope your business trip won't be too tiring, and that you'll be able to rest as needed. I hope it is somewhere exciting!

Best wishes for your appointments when you return, hoping for good news for you! The 10th is my second blood draw, 15th is the eyeball doc, and the 17th is the endo. I believe others will have testing done around then too, so we'll have lots to 'talk" about. I know all of us must have had other things to occupy our time before all of these appointments became sort of a routine in our lives...

Keep on keeping on! ;)

I turned over the November page on the calendar yesterday and couldn't believe all the doctors' appointments my mother, husband and I have lined up.

11/7 - Mother's prosthodontist
11/8 - Mother's pain specialist
11/9 - my retina specialist
11/10 - post surgery labs in the A.M./bone density test in the P.M.
11/11 - dentist
11/14 - cardiologist
11/15 - mammogram
11/17 - endocrinologist - #1 appt. since surgery

These don't include my husband's appointments.

Gheez! I feel like I'm on a medical merry-go-round! :party0009:I bought 3 flats of pansies last week...unless they miraculously stick themselves in the ground, I'm not sure when they're going to get planted!

[joplin1975]

So what I'm hearing is that tis the season for appointments???

:tongue0013:

Good luck to everyone.

I had my blood drawn this morning and will be anxious to hear what my endo's next move is tomorrow.

[webster2]

Yes, I do believe it is the season, just returned from taking my dad to the dentist. Joplin, I am sure it will be a great move! IDClaire, jeepers...that is quite a list of appointments! I was looking forward to getting the lab work done, until they phoned to brace me for 7 vials...will there be any left!

[nodakmom]

I bought the absolutely most comfortable faux-turtlenecks at Kohl's, if you have a store near you. They're cotton with a hint of spandex BUT the necks do not fit tightly, they're perfect. I bought pale pink/peach, turquoise, black and white - and I wear one or another almost every day! I paid a little over $10 each for them on sale.


I bought several mock turtlenecks from JC Penney's about 2 weeks ago, they had them on sale for $8.99. Score! lol I also found a couple at our goodwill store for a couple bucks (I'm not above 2nd hand shopping).

[webster2]

Do they not come near your scar? I can't stand anything touching mine..wimpy, wimpy, wimpy?

[joplin1975]

(I don't know where best to put this, but since I was starting with an excessively long whine, I figured I may as well continue.)

Well...fudge.

My endo's receptionist called and said I need to come in first thing tomorrow morning because my blood work was "really abnormal." I was a little perplexed by that statement because, did we all know I'm undermedicated? Ergo wouldn't it be expected to have the blood work be abnormal?? This is all not computing...and, of course, the receptionist is just the receptionist so she doesn't know...she only knows the endo "needs to see [me] PRONTO." I said ok, made the appointment for first thing tomorrow morning and then asked her if she could, at a minimum, tell me where my TSH numbers fell.

*ahem*

Prior to my RAI, it was 71.17.

I've been on 50 mcgs of Synthroid for six weeks now.

TSH now is 121.88.

I want to cry, partly in relief because I now know it's not in my head that I feel awful...and then also partly because, dang it, this has been going on for what feels like a very long time and my patience is just about plumb run out (said realizing that so many people have it worse...I'm just in the midst of my own little pity party here). I felt pretty darn good before my surgery and since then it's been downhill. I guess I had envisioned that I would have a high TSH (but not that high), she would immediately jack my meds up and we'd be on the happy train back to normalcy...I don't know what she wants to do now, but dang I'm so very disappointed.

[Andros]

(I don't know where best to put this, but since I was starting with an excessively long whine, I figured I may as well continue.)

Well...fudge.

My endo's receptionist called and said I need to come in first thing tomorrow morning because my blood work was "really abnormal." I was a little perplexed by that statement because, did we all know I'm undermedicated? Ergo wouldn't it be expected to have the blood work be abnormal?? This is all not computing...and, of course, the receptionist is just the receptionist so she doesn't know...she only knows the endo "needs to see [me] PRONTO." I said ok, made the appointment for first thing tomorrow morning and then asked her if she could, at a minimum, tell me where my TSH numbers fell.

*ahem*

Prior to my RAI, it was 71.17.

I've been on 50 mcgs of Synthroid for six weeks now.

TSH now is 121.88.

I want to cry, partly in relief because I now know it's not in my head that I feel awful...and then also partly because, dang it, this has been going on for what feels like a very long time and my patience is just about plumb run out (said realizing that so many people have it worse...I'm just in the midst of my own little pity party here). I felt pretty darn good before my surgery and since then it's been downhill. I guess I had envisioned that I would have a high TSH (but not that high), she would immediately jack my meds up and we'd be on the happy train back to normalcy...I don't know what she wants to do now, but dang I'm so very disappointed.

Lord have mercy, Chile'!!! This is horrid. You have been saying. Of course we all validated you but in our wildest dreams; 121.88????

Clearly you need meds titrated. I sure hope she ran your FREE T3 and FREE T4 as well?

Just think if you were on no thyroxine replacement? I would not want to wager a guess on that one!

Keeping you in my prayers and most sincere well wishes for tomorrow. You know we will all be waiting on tenterhooks to hear from you!

http://img.photobucket.com/albums/v129/LuLu1471/fallwarmhugs.gif

[joplin1975]

I do appreciate the ongoing validation...*sigh*

She did run free T3 and T4, but the receptionist was shuffling papers and so I just said "Can you give me my TSH for now and I'll get the rest tomorrow?" Then she said 121.88 and it took everything I had not to cry...just wanted to get off the phone with her. *sigh*

Again, the upshot is this is not my imagination...

[Octavia]

Wow... I know patience is key with this stuff, but you've been practically mistreated with this exceedingly low dose. Sounds like she has her reasons, but doesn't the hippocratic oath say "first, do no harm"?

Personally, I would be demanding a dose of 125 to 150 so I could at least begin to get on with my life. This is just crazy!

[Andros]

I do appreciate the ongoing validation...*sigh*

She did run free T3 and T4, but the receptionist was shuffling papers and so I just said "Can you give me my TSH for now and I'll get the rest tomorrow?" Then she said 121.88 and it took everything I had not to cry...just wanted to get off the phone with her. *sigh*

Again, the upshot is this is not my imagination...

Not for a minute did any of us think it was your imagination.

http://i588.photobucket.com/albums/ss323/Euler5853/Hugs/fallleav_big_hugs-vi4.gif

[Octavia]

Not for a minute did any of us think it was your imagination.

http://i588.photobucket.com/albums/ss323/Euler5853/Hugs/fallleav_big_hugs-vi4.gif

Ditto. Big, Fat Ditto.

[webster2]

OMG, I am so sorry. No wonder you don't feel well at all, and you've been going and doing things, darn. How you've been able to do all that I can't imagine. I, too, will be waiting to hear how things go tomorrow. You definitely are a super woman to be able to function. ((HUGS))

[SnoodMama]

Oh my gosh. I'm so sorry. We definitely all believed you and knew you were under-medicated by a long way and feeling horrible, but I can't even imagine what that level of hypothyroidism feels like. You should definitely get those articles that prove her technique from her tomorrow. What is the point of starting so far from a ballpark final range? I mean couldn't she have started just a little bit higher, and then given your horrendous symptoms increased it just a little bit faster??? I think she should have to work hard tomorrow to justify this gradual technique to you. I think you should try to get 100 or 125 micrograms out of her. But without reading those articles I don't know what in t he heck I'm talking about. I just know that 125 worked for me, although I did feel a bit jittery for a while but that seems to be subsiding now and is so slight compared to what you've been experiencing. I would really like to read those articles myself

[joplin1975]

Thanks, everyone. I'm really just angry right now. In the waiting room, hoping for some explanation, dang it. Will report in later. :)

[nodakmom]

Good luck joplin, I hope you get an apology, and a decent resolution. Hugs!

[Octavia]

Thanks, everyone. I'm really just angry right now. In the waiting room, hoping for some explanation, dang it. Will report in later. :)

Looking forward to hearing all about it. I really am. :hugs:

[webster2]

Me too. Me too, had to be 10 characters...

[joplin1975]

I don't even know what the Sam Hell happened today. I swear I have to keep checking myself to make sure I haven't lost my ever loving mind. I mean, I do like this woman as a person and I do understand she feels like she is doing right by me...and she comes highly recommended etc etc etc, but the appointment was 1/2 uber-weird and 1/2 what I wanted/needed. Which means while I'm not ready to jump ship, I'm going to have a long talk with my surgeon (next week) to get his thoughts.

First and foremost, she came in and was all "Do you know your TSH is 121.88?? That is INSANE!"

Um, yes. But that said, we are on the same page that I have a total thyroidectomy, right? And a RAI? So there's nothing left in there and I'm on 50 mcgs. Wouldn't being undermedicated result in an abnormally high TSH?? What am I missing?

She goes on to say that she expected it to be high, but not this high. So she grilled me: have I been taking it for the full six weeks? Yes Have I been taking it in the morning on an empty stomach? Yes. Was I sure I had the dates right? Was is really six weeks after the RAI or wad there a delay in there? It is exactly six weeks and here is all the documentation to demonstrate that I am completely on schedule and following the guidelines she set up precisely.

And then (this is where I got ticked right the heck off) she started mumbling something under her breath about athletes and how they always make the worst endocrinology patients because they never slow down or listen to their bodies like other people...and I was all EXCUSE ME?? I mean, really, EXCUSE ME? I'm walking two or three times a week and doing yoga occasionally BECAUSE THAT IS ALL MY BODY CAN TOLERATE. I've stepped down from two nonprofit boards because I can't function well enough to balance that with my job and other responsibilities. I've more or less given up riding and am thinking about selling my two dream colts because I can't safely work them nor can I afford to have someone else work much longer. I've put on 27 pounds (*ahem* her scale is apparently more accurate than mine) in six freakin' weeks, so I've had to go out and buy a new wardrobe. I gave up all alcohol, I'm eating like a bird, I look horrible, I feel horrible, and all I'm trying to do is save enough energy to do my job well so I can hang on to that and the few shreds of normalcy I have left in my life and you're telling me I haven't made enough lifestyle changes??? [insert a long string of curse words here]

Then she threw it into reverse, apologized, said that wasn't what she meant, and she is very, very sorry that I'm having such a hard time...that she didn't mean to up-end my life in such a way...that she was really concerned about my experience with heart palpitations and was trying to protect me, but clearly this isn't working and clearly I need more meds.

She started to say that her intention was to go from 50 to 75 to 88 to 100 to 125...and then beyond if needed. At that point I told her I couldn't wait, I was falling apart quickly and I felt that 125 would be the most humane next step. I could tell she was uncomfortable with that, so she countered with 100 for now and then we'd do blood work every 4 weeks for the next five months, which isn't "standard" but she is very open to taking a more aggressive approach to getting me up to speed, provided I promise to call her if I feel hyper/anxious/jittery/palpitations. Fine.

My goal leaving the house this morning was to minimally get up to 100, but I still think 125 would be better. Like I said, I'm going to review this with my surgeon next week...I know he thinks highly of my endo, but if he's leaning toward jumping ship, I'll take recommendations from him.

*sigh*

[Andros]

I don't even know what the Sam Hell happened today. I swear I have to keep checking myself to make sure I haven't lost my ever loving mind. I mean, I do like this woman as a person and I do understand she feels like she is doing right by me...and she comes highly recommended etc etc etc, but the appointment was 1/2 uber-weird and 1/2 what I wanted/needed. Which means while I'm not ready to jump ship, I'm going to have a long talk with my surgeon (next week) to get his thoughts.

First and foremost, she came in and was all "Do you know your TSH is 121.88?? That is INSANE!"

Um, yes. But that said, we are on the same page that I have a total thyroidectomy, right? And a RAI? So there's nothing left in there and I'm on 50 mcgs. Wouldn't being undermedicated result in an abnormally high TSH?? What am I missing?

She goes on to say that she expected it to be high, but not this high. So she grilled me: have I been taking it for the full six weeks? Yes Have I been taking it in the morning on an empty stomach? Yes. Was I sure I had the dates right? Was is really six weeks after the RAI or wad there a delay in there? It is exactly six weeks and here is all the documentation to demonstrate that I am completely on schedule and following the guidelines she set up precisely.

And then (this is where I got ticked right the heck off) she started mumbling something under her breath about athletes and how they always make the worst endocrinology patients because they never slow down or listen to their bodies like other people...and I was all EXCUSE ME?? I mean, really, EXCUSE ME? I'm walking two or three times a week and doing yoga occasionally BECAUSE THAT IS ALL MY BODY CAN TOLERATE. I've stepped down from two nonprofit boards because I can't function well enough to balance that with my job and other responsibilities. I've more or less given up riding and am thinking about selling my two dream colts because I can't safely work them nor can I afford to have someone else work much longer. I've put on 27 pounds (*ahem* her scale is apparently more accurate than mine) in six freakin' weeks, so I've had to go out and buy a new wardrobe. I gave up all alcohol, I'm eating like a bird, I look horrible, I feel horrible, and all I'm trying to do is save enough energy to do my job well so I can hang on to that and the few shreds of normalcy I have left in my life and you're telling me I haven't made enough lifestyle changes??? [insert a long string of curse words here]

Then she threw it into reverse, apologized, said that wasn't what she meant, and she is very, very sorry that I'm having such a hard time...that she didn't mean to up-end my life in such a way...that she was really concerned about my experience with heart palpitations and was trying to protect me, but clearly this isn't working and clearly I need more meds.

She started to say that her intention was to go from 50 to 75 to 88 to 100 to 125...and then beyond if needed. At that point I told her I couldn't wait, I was falling apart quickly and I felt that 125 would be the most humane next step. I could tell she was uncomfortable with that, so she countered with 100 for now and then we'd do blood work every 4 weeks for the next five months, which isn't "standard" but she is very open to taking a more aggressive approach to getting me up to speed, provided I promise to call her if I feel hyper/anxious/jittery/palpitations. Fine.

My goal leaving the house this morning was to minimally get up to 100, but I still think 125 would be better. Like I said, I'm going to review this with my surgeon next week...I know he thinks highly of my endo, but if he's leaning toward jumping ship, I'll take recommendations from him.

*sigh*

Thank God for the 100 mcg. and a good thing you said 125 mcg. or you would not have gotten that.

And, some folks don't know; undermedicated causes heart palps and arrhythmia also. Being "just right" is the key and that varies from person to person.

Yeah; I am with you. I think it is time to move on. I really do. You need your life back and there is no earthly reason you should not accomplish that goal provided you have a good and caring doctor.

Did she run your FREE T3 and FREE T4 perchance?

[Octavia]

Well, at the risk of sounding really cheesy, I'm proud of you for standing up for yourself...you really needed to!

And excuse my abbreviated french here, but WTF did she think was going to happen putting a grown woman with NO thyroid on only 50 mcg of replacement? I mean, really? I just don't understand how a doctor can expect someone to put their entire life on hold while they take 6 months to oh-so-gradually work their way up to a therapuetic dose. As I said in another post, I know she has her reasons, but I respectfully disagree with them. On paper, her plan might look good, but in reality, it just can't work for a normal human being.

I am SOOOO glad you at least got increased up to 100, which of course will not be enough, but hey, it's progress!

But here's an honest question....my understanding is that her main concern/reason for the super-gradual increase is heart palpitations. If that's the case (or even if it isn't the case), what's the big deal about heart palpitations? I'm not trying to belittle the situation at all...I've had heart palpitations since I was in college, have talked to numerous docs about it, done the holter monitor twice, and they all say not to worry about it. I will say that my palpitations have gotten worse since my thyroidectomy, but again, nobody seems concerned... so what is the risk? (I vaguely remember reading soemthing about cholesterol, which made no sense to me.)

[webster2]

Wow, I am really sorry she came in expecting to find fault in something you might have been doing, that sure is not the way to start of an appointment and then the way she initially responded wasn't too cool either. I think her plan of replacement sounded great in theory but in real life it is so not working. I am sorry you had to fight to get a good increase in your synthroid, just to see if it will provide some energy for you to get back to what your normal life was.

This made me really sad:
And then (this is where I got ticked right the heck off) she started mumbling something under her breath about athletes and how they always make the worst endocrinology patients because they never slow down or listen to their bodies like other people...and I was all EXCUSE ME?? I mean, really, EXCUSE ME? I'm walking two or three times a week and doing yoga occasionally BECAUSE THAT IS ALL MY BODY CAN TOLERATE. I've stepped down from two nonprofit boards because I can't function well enough to balance that with my job and other responsibilities. I've more or less given up riding and am thinking about selling my two dream colts because I can't safely work them nor can I afford to have someone else work much longer. I've put on 27 pounds (*ahem* her scale is apparently more accurate than mine) in six freakin' weeks, so I've had to go out and buy a new wardrobe. I gave up all alcohol, I'm eating like a bird, I look horrible, I feel horrible, and all I'm trying to do is save enough energy to do my job well so I can hang on to that and the few shreds of normalcy I have left in my life and you're telling me I haven't made enough lifestyle changes??? [insert a long string of curse words here]

I am pretty sure you are a young person with a really active life style, so this new found sluggish post thyroidectomy lifestyle is such an abrupt change for you that it is really hard to take. Hopefully with a higher dose of medication these things will be possible again. Soon.

I wish I could say something to make you feel better, or give you some hope. I am really glad you have good connections in the medical community. Now that your initial labs are in, hopefully they can do something quickly to improve the quality of your life. I think you are wise to consult your surgeon before "jumping ship".

Hang in there, my friend, you are in good company. As I said earlier, I am not a good butt kicker but will commiserate with you. The others will bring the humor and good advice. :)

[joplin1975]

Did she run your FREE T3 and FREE T4 perchance?

Yes. My copy is in the car and it's raining cats and dogs here, so I left it in the car when I ran into my office. I'll post tonight. :)

But here's an honest question....my understanding is that her main concern/reason for the super-gradual increase is heart palpitations. If that's the case (or even if it isn't the case), what's the big deal about heart palpitations? I'm not trying to belittle the situation at all...I've had heart palpitations since I was in college, have talked to numerous docs about it, done the holter monitor twice, and they all say not to worry about it. I will say that my palpitations have gotten worse since my thyroidectomy, but again, nobody seems concerned... so what is the risk? (I vaguely remember reading soemthing about cholesterol, which made no sense to me.)

Well, I asked my SIL (she's a PA for a cardiologist and was the one who recommended the endo). According to her supervising physician, occasional heart palps related to increases in meds are ok now and again. But when someone is getting them regularly (as I was pre-surgery), it can lead to arterial hardening and that all shows up when you get older. I guess they treat a lot of people who are older and have had thyroid issues for cardiac problems that they think arose when they were younger and getting treated for their thyroid. The arterial hardening is a much harder fix than undermedication issue. Which I appreciate. The disconnect for me that was that she had me on 50 mcgs when I was subclinically hypo and my free T3 and T4s were well within range -- it was *then* I had heart palps. Comparing that to post-surgical situation where my pre-RAI TSH was 71.17 seems like an apples to oranges approach, ya know?

Hang in there, my friend, you are in good company. As I said earlier, I am not a good butt kicker but will commiserate with you. The others will bring the humor and good advice.

:-) Thanks much and I appreciate it! I know, logically, it will all work out in the end. It's just the journey that can be difficult.

[nodakmom]

Wow. Proud of you for standing up! Hope you start feeling better soon!

[Octavia]

Thanks for the palpitation clarification! Now that you explain it...I do remember something about hardening, not cholesterol. Good to know.

[SnoodMama]

Wow, that is bizarre. I'm so angry about what she said to you in the first half of the appointment. But she came around. She came around. I keep reminding myself that every time I remember what she said at first. LOL. So did you tell her all those things you wrote here about the changes that have occurred in your life as a result of this? I hope you did.

I'm so glad you got the 100 micrograms and 4 week interval. I hope you start feeling better real soon. Were you tempted to secretly pop extra pills in the middle of the night! I think I might have been!

So what is she going to do if you do get palpitations? What do they do, lower the T4 medicine and add some T3? Just to ramble out loud here.... my best friend has basically heart failure AND Hashimoto's Disease. She is hypo and every time she takes Synthroid she has arrythmias and it increases her atrial fibrilation, which could give her a stroke. So, her endo (same endo as mine) won't give her more Synthroid unless her TSH reaches 20. She is currently at 10. Just thinking out loud here. The stuff can really mess with your heart. Not defending her. Just wondering what she will do if you do end up showing sensitivity to the hormones? I know that I feel like my heart is pounding and I feel jittery and stuff, but my TSH is 2.6. It isn't bad enough that I would want to change my dose, but it is taking some getting used to. It seems to be getting better over time, though, so even if you do end up being sensitive to things it might pay to give your body time to adjust.

ok I'll stop rambling now. I'm just glad you got some more medicine.

[joplin1975]

So what is she going to do if you do get palpitations? What do they do, lower the T4 medicine and add some T3? Just to ramble out loud here.... my best friend has basically heart failure AND Hashimoto's Disease. She is hypo and every time she takes Synthroid she has arrythmias and it increases her atrial fibrilation, which could give her a stroke. So, her endo (same endo as mine) won't give her more Synthroid unless her TSH reaches 20. She is currently at 10. Just thinking out loud here. The stuff can really mess with your heart. Not defending her. Just wondering what she will do if you do end up showing sensitivity to the hormones? I know that I feel like my heart is pounding and I feel jittery and stuff, but my TSH is 2.6. It isn't bad enough that I would want to change my dose, but it is taking some getting used to. It seems to be getting better over time, though, so even if you do end up being sensitive to things it might pay to give your body time to adjust.


I *think* she would add some T3 into the mix -- she's mentioned on a number of occasions that some of her other patients are on T4/T3 therapies. But I really don't know...I admit I was in a GET ME MORE SYNTHROID NOW mindset!. :)

I've been running around like mad this weekend, so I finally looked at my labs. *sigh* I have TSH and free T4...no Free T3. Don't know why, but I've got a call into her office to ask that be run at the end of the month.

So:
TSH: 121.88 (.4-4.5)
Free T4: 0.7 (0.8-1.8)

Feeling considerably better in just a few days and looking forward to my appointment with my surgeon tomorrow morning.

[Andros]

I *think* she would add some T3 into the mix -- she's mentioned on a number of occasions that some of her other patients are on T4/T3 therapies. But I really don't know...I admit I was in a GET ME MORE SYNTHROID NOW mindset!. :)

I've been running around like mad this weekend, so I finally looked at my labs. *sigh* I have TSH and free T4...no Free T3. Don't know why, but I've got a call into her office to ask that be run at the end of the month.

So:
TSH: 121.88 (.4-4.5)
Free T4: 0.7 (0.8-1.8)

Feeling considerably better in just a few days and looking forward to my appointment with my surgeon tomorrow morning.

Does your doctor know that your TSH should be suppressed because of the cancer?

http://www.thyca.org/tsh-suppression.htm

http://www.cornellsurgery.org/pro/services/endocrine/thyroid-follow-up.html

Please let us know what your surgeon has to say and I am glad you are feeling a tad better.

[Octavia]

Certainly glad you're feeling a bit better!!!!

[joplin1975]

Does your doctor know that your TSH should be suppressed because of the cancer?

http://www.thyca.org/tsh-suppression.htm

http://www.cornellsurgery.org/pro/services/endocrine/thyroid-follow-up.html

Please let us know what your surgeon has to say and I am glad you are feeling a tad better.

Yes, we have discussed that and she said the goal (long-term) was suppression. She just apparently wanted to take her sweet time getting there. Oy!

[Andros]

Yes, we have discussed that and she said the goal (long-term) was suppression. She just apparently wanted to take her sweet time getting there. Oy!

I am all for slow titration of meds but "10" years is ridiculous! :tongue0015:

[joplin1975]

I am all for slow titration of meds but "10" years is ridiculous! :tongue0015:

I know, right???

I told my husband that tomorrow, when I'm in the city for my surgical follow up, I'm going to be tempted to stop into the endo's office and tell her that I have not had a single heart palpitation all weekend...and then I want to make this face ---->:tongue0015:

But he told me to behave myself and apparently doing so does not fall under the umbrella of "behaving oneself." I swear, no one lets me have any fun these days...

:)

[Octavia]

But he told me to behave myself and apparently doing so does not fall under the umbrella of "behaving oneself." I swear, no one lets me have any fun these days...

:)

Good behavior is totally overrated. :tongue0015:

[Andros]

I know, right???

I told my husband that tomorrow, when I'm in the city for my surgical follow up, I'm going to be tempted to stop into the endo's office and tell her that I have not had a single heart palpitation all weekend...and then I want to make this face ---->:tongue0015:

But he told me to behave myself and apparently doing so does not fall under the umbrella of "behaving oneself." I swear, no one lets me have any fun these days...

:)

Too funny! On a serious note; it matters little sometimes whether the person is undermedicated or overmedicated for if not just right, palps and arrhythmia can and do occur. And this is a pure E fact!

[webster2]

I think you should compromise, and just do it as you are going by her office in the car! ;)

[nodakmom]

I think you should compromise, and just do it as you are going by her office in the car! ;)

hugs3 i agree lmao

[joplin1975]

Y'all are cracking me up. :)

So, just to continue the thread, I had a follow up with my surgeon this morning. It was a very nice appointment.

Basically:
*I have a teeny tiny neuroma forming on my scar. I've been instructed to continue with scar massages and focus on pressing on that area. He thinks it will resolve itself just fine.
*The scar itself is slightly pigmented, but he thinks that will fade with time.
*He was...unpleased synthroid dosing/TSH nonsense. He said that endo is a good doc, but that she's very used to old, sedentary patients and therefore tends to be overly cautious. He said when I told him she was managing my post-op replacement meds, he was concerned this would happen and sincerely regretted not speaking up more...and explained he felt caught between a rock and a hard place when one does not fully "own" a patient. He apologized profusely and while it doesn't get me my six weeks back, it was nice to hear.
*He said he wouldn't jump ship with her quite yet, as the other options in the area aren't really any better...and at least he has a working relationship with her.
*He told me not to be afraid to call him if I questioned how things were proceeding -- he was there to address concerns and would be happy to help advocate on my behalf.
*Regarding future increases in dosages, he said "it is was it is now" and he agreed the accelerated schedule was probably the best option, given the current circumstances.
*He said when he met me he had me pegged as a "175 mcgs kind of person" given my active lifestyle. "I mean this in the most appropriate way possible, but you don't get arms that big by being a couch potato." SNORT. Filing that number away in the back of my mind.
*He's encouraging me to be as active as my body will tolerate. "Let's get you back in shape." YAY!
*He reviewed my post-RAI WBS (I had not seen anything about this yet) and said there was a significant decreased thyroid uptake so "it looks like it worked well."
*He gave my neck a good poking and didn't find anything of concern (not that I expected he would, but it's sure nice to hear!).
*He wants to see me at the beginning of March to make sure this replacement medication stuff has been fully resolved.

So, onward we go...

[Andros]

Y'all are cracking me up. :)

So, just to continue the thread, I had a follow up with my surgeon this morning. It was a very nice appointment.

Basically:
*I have a teeny tiny neuroma forming on my scar. I've been instructed to continue with scar massages and focus on pressing on that area. He thinks it will resolve itself just fine.
*The scar itself is slightly pigmented, but he thinks that will fade with time.
*He was...unpleased synthroid dosing/TSH nonsense. He said that endo is a good doc, but that she's very used to old, sedentary patients and therefore tends to be overly cautious. He said when I told him she was managing my post-op replacement meds, he was concerned this would happen and sincerely regretted not speaking up more...and explained he felt caught between a rock and a hard place when one does not fully "own" a patient. He apologized profusely and while it doesn't get me my six weeks back, it was nice to hear.
*He said he wouldn't jump ship with her quite yet, as the other options in the area aren't really any better...and at least he has a working relationship with her.
*He told me not to be afraid to call him if I questioned how things were proceeding -- he was there to address concerns and would be happy to help advocate on my behalf.
*Regarding future increases in dosages, he said "it is was it is now" and he agreed the accelerated schedule was probably the best option, given the current circumstances.
*He said when he met me he had me pegged as a "175 mcgs kind of person" given my active lifestyle. "I mean this in the most appropriate way possible, but you don't get arms that big by being a couch potato." SNORT. Filing that number away in the back of my mind.
*He's encouraging me to be as active as my body will tolerate. "Let's get you back in shape." YAY!
*He reviewed my post-RAI WBS (I had not seen anything about this yet) and said there was a significant decreased thyroid uptake so "it looks like it worked well."
*He gave my neck a good poking and didn't find anything of concern (not that I expected he would, but it's sure nice to hear!).
*He wants to see me at the beginning of March to make sure this replacement medication stuff has been fully resolved.

So, onward we go...

The "biggie" is that he validated you and your needs. Is he going to have a chat with the endo and lite a fire under her you know what??? Like you know; accelerate, accelerate!!

Well; all humor aside, this truly is not funny when one is waiting to get her life back. {{{{Joplin}}}}

[joplin1975]

The "biggie" is that he validated you and your needs. Is he going to have a chat with the endo and lite a fire under her you know what??? Like you know; accelerate, accelerate!!

Well; all humor aside, this truly is not funny when one is waiting to get her life back. {{{{Joplin}}}}

Yes! He was going to call her this afternoon. He admitted it's a fine line, when doctors from two different practices are dealing with the same patient for the same or overlapping issues (which I get, my husband runs into this all the time). Although he said given that I've been undermedicated for so long now 25 mcgs increases every four weeks was probably the best resolution for what he describes as a crummy situation. However, I did tell him if, after they talked, they agreed I could tolerate 125 mcgs now, I'd be open to doing that. :) Just in case...

[Andros]

Yes! He was going to call her this afternoon. He admitted it's a fine line, when doctors from two different practices are dealing with the same patient for the same or overlapping issues (which I get, my husband runs into this all the time). Although he said given that I've been undermedicated for so long now 25 mcgs increases every four weeks was probably the best resolution for what he describes as a crummy situation. However, I did tell him if, after they talked, they agreed I could tolerate 125 mcgs now, I'd be open to doing that. :) Just in case...

I hear you loud and clear! And I'll bet any money the surgeon is correct about you stabilizing on 175 mcg..

[webster2]

Yehaw! Glad to hear good news for you!