I've HAD IT with this hair loss.....

[Butterflyjkg]

Okay.. I am just feeling sick and tired of this hair falling OUT! I've had it! :sad0049: I had my thyroid taken out in October and my hair has been seriously falling out ever since. My endo said " oh, that's not from THAT... that's a vitamin thing.. take Vit D ..." UM, I DO. I take 2000 IU a day.... so, what now?

My thyroid readings are on the lowest of the low side that they can be....and I am just tired of having my hair all over my house... down my shirt, clogging the drain, in my food.... everyone in my house is complaining about eating my hair, etc. WHEN if EVER is this going to stop!??? You can't tell me it's not from my surgery.

Can't they raise my meds just a tad to increase my levels to somewhere near where they were before? I was right in the middle of the scale.. not teetering on the brink of the low end. I know they say you have to keep things "low" so my thyroid won't grow back? or whatever?!! What if it does grow back? Don't I need it anyway? Or is it that it will grow back somewhere else or not stop growing or what?!

My Endo didn't really answer too much.. just said " you are FINE.. go live your life." My dog is even ingesting so much of my fallen hair that she has it hanging out of all of her Ins and outs without being too gross. It snowed here the other day.. the next day I was outside and I saw my hair all over the SNOW! GEE WHIZ!!! I get wads of hair out of the tub drain and I just can't stand it anymore. Thank GOD I have lots of hair. I would say it's at least half gone by now. What is to prevent it from ALL falling OUT??!!! Why can't they increase my meds just a little? I don't even recognize my hair as being my own anymore... it's unrecognizable.

[Octavia]

Okay...I totally know what you mean about the hair loss. I have very thick hair, so when mine was falling out for 6 months or so, it wasn't noticeable to others, but I sure lost a lot in the shower, bed, etc.

I have to disagree with your doc...it is highly likely that it's a thyroid thing.

When you say your "thyroid readings are on the lowest of the low side," what do you mean, exactly? Can you post your lab results, along with the ranges? (I'm wondering if you're referring to TSH? T3? FT3? T4? etc.)

[Butterflyjkg]

I just saw this... under a link for another post on here about what to eat or not eat with Levoxyl....

11.Partial hair loss may occur rarely during the first few months of Levoxyl® therapy, but this is usually temporary.


Okay.. any other Levoxyl peeps out there going bald?? It's really bringing me down.....and notice how it says it's USUALLY temporary.... ug.....

[Octavia]

Yes...it IS a side effect of Synthroid, Levoxyl, etc. And yes, I was temporarily going bald, except that I have too much hair to really go bald! It just seemed like I was!

[Butterflyjkg]

I'm referring to my Thyroid STIM TSH... before surgery it was 3.08... AFTER surgery it's .54. BIG DIFFERENCE. Why won't they put me back up there in the middle somewhere?? I want my hair to stay on. If my body functioned where it wanted to at 3.08 I don't know why .54 is considered okay?

I don't understand the "suppressing " it part. I mean I do, but I don't. What happens if it grows back? Anyone know?

I haven't seen any T3 or T4 reading ever... well I saw a T4 BEFORE my surgery and that was 1.16

My PARATHORMONE reading post surgery is 21.

[Octavia]

The suppressing part...are you post-cancer?

The hair loss will stop. Mine stopped after 5-6 months, but slowed down considerably after about 4 months. Your surgery wasn't that long ago, so you may have a few more months of hair loss.

[sonnyjane]

Interesting to see that hair loss can actually be a side effect of the medication. I had my TT on Nov. 21st and experienced really severe hair loss for several weeks. Like Octavia, I have really thick hair, so other than the visible breakage where it looked like a toddler cut my hair, I didn't have any bald spots or anything, I just noticed massive amounts of hair around the house. I went off my thyroid medication a couple of weeks ago to get ready for RAI and did notice that my hair stopped falling out. I figured it was because the initial shock of thyroid removal had worn off, but I wonder if it's just because I stopped taking my meds and it will start up again once I go back on them next week!?

[Fissy]

I was losing huge amounts of hair after starting on meds. I think I nearly cried every time I brushed my hair! It's a horrible thing to go through on top of everything else and I hope you can find the solution. :)
Mine stopped after about 2 months and it's grown back now but it's in pretty bad condition. No idea if it was the thyroxine since I'm still on it or if it was some delayed hypo symptom.

[joplin1975]

Yup, I'm in the midst of hair loss. I had thick hair before hand so I'm not in too bad of shape, but, man, cleaning out the drain after a shower is vomit-worthy. :)

What happens if it grows back? Anyone know?

Does "it" refer to the thyroid cells? Suppressing your TSH should help limit re-growth.

[Andros]

I'm referring to my Thyroid STIM TSH... before surgery it was 3.08... AFTER surgery it's .54. BIG DIFFERENCE. Why won't they put me back up there in the middle somewhere?? I want my hair to stay on. If my body functioned where it wanted to at 3.08 I don't know why .54 is considered okay?

I don't understand the "suppressing " it part. I mean I do, but I don't. What happens if it grows back? Anyone know?

I haven't seen any T3 or T4 reading ever... well I saw a T4 BEFORE my surgery and that was 1.16

My PARATHORMONE reading post surgery is 21.

You definitely need the FREES.

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

http://www.drlam.com/articles/hypothyroidism.asp?page=2#diagnosis: standard laboratory test

Omega III would help your hair loss and your nails. 2000 mgs. per day would be good. It will take about a month to see the difference.

[Butterflyjkg]

Yes, I am post cancer.. papillary... teeny tiny papillary. The "it" I was referring to was my thyroid itself growing back.

I have only had my T4 tested one time. My Endo didn't even mention having that blood test taken.. on my visit in 3 months she only wants to see my Thyroglobulin...... OKAY? WHY? Meanwhile, I am turning into Mr. Clean.

I will try the Omega 3's... anything at this point. I am sick of HAIR HAIR HAIR everywhere. Now WHY wouldn't my doctor want my T3 and 4? I am wondering if she stinks as a doctor??

I don't know... how do you know if your doc is any good? I want the best stinkin' chance I have at leading a somewhat "normal" life WITH HAIR, thank you!!! :anim_63:

[Butterflyjkg]

You know.. I posted about my hair loss and I went back and read my post. The first couple words... " Yes, I am post cancer" just about made me feel sick in the stomach. It was almost like it wasn't me that wrote that. Those words are just so awful... sometimes I forget, you know. It's very surreal. :(

[Andros]

Yes, I am post cancer.. papillary... teeny tiny papillary. The "it" I was referring to was my thyroid itself growing back.

I have only had my T4 tested one time. My Endo didn't even mention having that blood test taken.. on my visit in 3 months she only wants to see my Thyroglobulin...... OKAY? WHY? Meanwhile, I am turning into Mr. Clean.

I will try the Omega 3's... anything at this point. I am sick of HAIR HAIR HAIR everywhere. Now WHY wouldn't my doctor want my T3 and 4? I am wondering if she stinks as a doctor??

I don't know... how do you know if your doc is any good? I want the best stinkin' chance I have at leading a somewhat "normal" life WITH HAIR, thank you!!! :anim_63:

If that doctor is not doing your FREE T4 and FREE T3 once in a while, there is something terribly wrong.

TSH does not reflect what your body needs or more importantly is getting or not getting.

[Butterflyjkg]

I go back to her (Endo) in the beginning of April.. I am going to ask her WHY we haven't been monitoring that. OR, do you think I should not wait that long? I mean, if the 3 and 4 are not in the right range, what could that do or how would I be feeling? How important are those readings ?

[nodakmom]

I've always been one to lose hair, even before my TT. My husband would give me grief after finding a hair in dinner lol. Now, I'm losing even more, but I don't cook as much :P I always swear if I'd save all the hair I lose by the end of the year I could have a wig made.

[Octavia]

You know.. I posted about my hair loss and I went back and read my post. The first couple words... " Yes, I am post cancer" just about made me feel sick in the stomach. It was almost like it wasn't me that wrote that. Those words are just so awful... sometimes I forget, you know. It's very surreal. :(

I know what you mean. It hit me hard when I had to walk through a set of glass doors with the words "Radiation Oncology" etched in them. Not in an upsetting way, but surreal is exactly right.

And any leftover/rogue thyroid cells that were left behind after your surgery should have been killed off if you did RAI, and/or should be limited in their grown because of the TSH suppression.

[Butterflyjkg]

I am surprised that there aren't more replies to the hair loss thing here. I am really starting to worry about it. I know I probablly can't do anything about it.... but it is starting to make me very nervous.

Now, what about people who take Synthroid...are they half bald? Is this a side effect of ALL thyroid replacement drugs ?? My coworker takes Synthroid and I have never heard her complain about it... but then she's been taking it her whole life pretty much.

I know I sound like a cry baby here but it is just so out of control..... :sad0049: I was standing in the bathroom getting dressed and I can literally FEEL the hair dropping down my back.. on my arms.. it's like a shower of HAIR... it's just really depressing. I went downstairs last night and my husband says.. " awww, honey.. your hair is so little..." YES, I know... I'm going to vacuum and make m'self a weave. :party0006:

[I DClaire]

I went out to eat with a group of women last Saturday and overheard two talking about losing their hair - and both are on Synthroid, though not what sounded like large doses. It was OBVIOUS one woman was losing her hair - the other not as much.

All I can share is my own personal experience BUT I've now been on Armour for a month and my hair loss seems dramatically less. For awhile I'd find hair (mine is silvery white) in food I was preparing or on my own plate, it would wake me in the night if it fell on my eyes or lips, my hairbrushes were filled...now I'm simply not seeing much hair falling out and I think I see new hair coming in - bigtime!

I know we all shed hair from time to time but I've never experienced anything like what I've been trying to deal with EXCEPT immediately after my daughter was born.

I have found a volumizer that works for me - Big Sexy Hair (the tall, red can). It really makes a difference in the appearance of my hair but don't use too much.

Something may yet come along and burst my fragile little bubble of hope but I'm honestly thinking Armour is beginning to work for me. I've been going to bed at night with a degree of anticipation about what my plans are for the next day and I wake up with a greater degree of feeling rather normal. :) I've been afraid to say much for fear of jinxing the improvement but I can honestly say I feel happier, calmer and more productive - not to mention about to pop with hope that this is all a sign that maybe I'm going to survive!! :winking0051:


Tomorrow I'll begin month #2 with Armour.

[webster2]

I am still losing hair too. Not quite like I was on the levo. The biggest change in my hair that I still can't fathom is the texture. As a teen in the 70's everyone wanted straight hair, I didn't ever achieve that. I have always had coarse brillo pad extremely curly hair not it is just as straight as can be and fine and soft. The color is still auburn but it is weird without the 800 pound gorilla on my head.

I take Nature-throid and it seems to work. I just had my gall bladder out and tomorrow i get the cast off my arm, so in a week or so, I am getting my bloodwork done to see about an adjustment.

[sonnyjane]

I am still losing hair too. Not quite like I was on the levo. The biggest change in my hair that I still can't fathom is the texture. As a teen in the 70's everyone wanted straight hair, I didn't ever achieve that. I have always had coarse brillo pad extremely curly hair now it is just as straight as can be and fine and soft. The color is still auburn but it is weird without the 800 pound gorilla on my head.



See, I have the opposite problem. My hair was always shiny and golden - everyone wanted it - and now since my TT, I look like I'm wearing a bad wig. It's so dead and lifeless.

OP I'll try to remember to keep you posted. On Cytomel my hair was really leaping from head, then I went off it for the last month for RAI and the hair loss stopped, and today was my second day on Synthroid so I'll see if it starts to fall out again.

[Lovlkn]

Unstable thyroid levels are a recipe for hair loss. I hardly lose any hair anymore now that my levels are stable. Unstable thyroid hormone levels can cause alot of issues for that matter.

Butterfly - you can order your own FT-3 and FT- which comes with a TSH for around $85 at HealthcheckUSA.com use the code 12345 for a discount. I run tests every so often, especially before my thyroid was removed and rately now. For $85 it's worth saving your breath with your doctor.

Endo's are the worst in my opinion for dosing replacement hormone and running proper tests. After this next visit you should try to find a GP to treat you.

[I DClaire]

Today I went to the pharmacy to get my Armour refilled. The last time I was there the cashier overheard me talking to another woman who had recently had her thyroid removed and told us that she, too, had recently had her thyroid removed.

I could not believe how much hair that young woman had lost when I saw her today. I was dumbfounded! I didn't say anything about her hair but I did make a point of saying I'm becoming more convinced every day that Armour is making a positive difference for me.

She remarked that a lot of people say Armour effected them altogether differently from Synthroid but she never seemed to think or say she was interested in trying it.

There was a report on the national news less than a month ago about thyroid cancer all but being an "epidemic" right now, particularly with middle-aged women and researchers are looking for a reason. Some speculate that it may be related to dental x-ray OR mammograms.

I didn't know until I mentioned this to my dentist a week later that there is a separate collar that is supposed to be used in addition to the heavy protective vest when dental x-rays are taken. It is a small, neck-shaped, protective collar...and that day is the very first time I've ever seen it!

[sonnyjane]

There was a report on the national news less than a month ago about thyroid cancer all but being an "epidemic" right now, particularly with middle-aged women and researchers are looking for a reason. Some speculate that it may be related to dental x-ray OR mammograms.

I didn't know until I mentioned this to my dentist a week later that there is a separate collar that is supposed to be used in addition to the heavy protective vest when dental x-rays are taken. It is a small, neck-shaped, protective collar...and that day is the very first time I've ever seen it!

IDClaire, I believe that the "thryoid collar", as my dentist called it, is relatively new, at least in common practice. Actually, I had a dentist's appointment in December, 2 weeks after my thyroid surgery, and they took X-rays on me, and she made a point to put the collar on me "to prevent thyroid cancer" and I kind of chuckled and explained that I just had it removed because of thyroid cancer. I've probably had a dozen dentists in the last 20 years due to moving so often, and I've never seen anything other than the standard lead apron. I think the collar is new and probably something becoming popular because of this "thyroid epidemic" as the news called it. I'm only 28, so I haven't had any mammograms, but it would make sense about the dental X-rays, since I've never had any other type of exposure to radiation. I did, however, get lots and lots of X-rays between dentist and orthodontist visits when I was young. It's definitely plausible!

[webster2]

See, I have the opposite problem. My hair was always shiny and golden - everyone wanted it - and now since my TT, I look like I'm wearing a bad wig. It's so dead and lifeless.

OP I'll try to remember to keep you posted. On Cytomel my hair was really leaping from head, then I went off it for the last month for RAI and the hair loss stopped, and today was my second day on Synthroid so I'll see if it starts to fall out again.

Oh, mine is lifeless too unless you count the leap it makes to the floor or bottom of the bath tub, or wherever else it lands....;) My hair doesn't look good at all. It baffles my hairdresser more than when it was an uncontrollable bulk. I have debated getting it cut really short but I am 6'1" and really don't like short hair on me.....but we do have hair, perhaps it will improve in time.

[Lovlkn]

The thyroid collar has been around a long time - problem is they never use it.

My dentist has been using it forever. I was a maniac about my kids having it on them during x-rays

Ten years ago when I broke my foot I asked for one when they x-rayed my foot and the doctors office had it - said it didn't matter cuz it was so far from my neck but I insisted anyway.

Back to hair loss now...

You all need to post your latest lab results in your signature line.

Hair loss is from thyroid imbalance - moving thyroid levels makes hair fall out.

[miguel]

I had hair loss when I was hyperthyroid and methimazole, after the TT I had my hair re-growth. Levothyroxine not caused to me the hair loss at all and I am not susceptible to androgenic alopecia. When I was in methimazole I was afraid to shower because I had a lot of hair loss. I recommend you avoid the stress because can cause hair loss, try to relax.

[joplin1975]

I just stepped off the plane from a vacation in Mexico...I don't think I appreciated how much hair I lost until my scalp got burned. Whoooops. My scar was slathered in sun screen, but I needed a hat sooner than I thought. Told my husband he was one lucky dude to be married to a fat balding woman. :) (One has to laugh...)

[webster2]

Yeah, I thought my husband would beat me to fat & bald! Hope you had a nice vacay!

[Butterflyjkg]

I am trying out my new signature line.. I am hoping it works.

[Lovlkn]

No other tests were performed since 11/22/11 because I AM FINE and I need to stop worrying and go live my life!!

Butterfly -

Your doctor is being negligent by not running testing other than TSH on you.

Go to www.healthcheckusa.com and order Thyroid Panel II with TSH. There are other sites that run thyroid testing - this is the one I use when I feel the need for testing and my doctor won't run the tests, which is rare for me these days.

http://www.healthcheckusa.com/Thyroid-Panel-II-with-TSH/46938/

For $85 you can know for sure how your replacement meds are working. Discount code 12345 should give you a 10% discount.

Post your result when you get them.

Start looking for a new doctor to treat you for replacement meds.

[Octavia]

It seems to me that you need to get your labwork done again. A dose of 100 mcg seems a bit low after a TT. Plus, you were not on your replacement hormone for 6 weeks prior to your most recent labwork (if it was 11/22), so it appears that you are due for new tests. Can your family doc order the labwork so you don't have to get it on your own? I went to my family doc with a short list of labs I wanted to have tested, and she wrote the order for exactly what I wanted, no questions asked. Worth a try.

[Butterflyjkg]

AM I CRAZY???

Okay, so I went to my family doc today for a UTI and while I was there, showed her a BAG OF HAIR that fell off my head during my hair wash last night. NOT including what went down the drain, of course. She wasn't surprised at all. I then discussed my ENDO doc and how I think I am not getting adequate treatment... if you recall I am post papillary cancer and slowly going BALD from Levoxyl and was told it's FINE, I'm FINE, the world's fine, etc.

People on here take Armour and NatureThroid and I wanted to know if I COULD TRY that to maybe help me keep my hair and my sanity and feel possibly better.

This was her response. She said NO. Armour is NOT for people who had cancer! Armour is "not regulated" very well.. it varies greatly from batch to batch and that "stuff" was recalled recently because of it and it just now back on the market.... and I then said that I read on the NatureThroid website they their stuff does NOT vary at ALL and is very high quality and what not.

Again she said that "cancer" patients can't take that chance.. on "your cancer coming back" ... you wanna keep your readings LOW so it does not recurr. Your levels need to be low, like between .75 and 2. I said OKAY, then why is MY level .54 and WHY is that okay? If I am going BALD, then that is not OKAY. Why can't we bump me up in my readings to maybe a 1 or a 1.5 or something? It would still be in the "low" range and maybe my hair would stay on then.???

She looked at me like I was speaking in tongues. She said that she knows my Endo doc DOES prescribe Armour, but she is SURE that she does NOT perscribe it to people who have had cancer. It's NOT a good idea, you do NOT want it coming back!

This is where I was like WHAATT the HEECCKK??? If my Thyroid DOES start to grow back, it's not going to have CANCER IN IT!!! You don't GET cancer from a slightly higher LOW TSH level!!!!! My Endo told me I will NEVER have cancer again in there. It was miniscule and contained and a miracle in ITSELF that we even KNEW it was there...and then my Endo doc she said " you do know, that if your thyroid does start to grow back, it certainly would NOT be cancerous.... I said I know.

SO, Okay.. what are the percentages of people that have it removed and then it grows back? What if it does? Will I die? Will I fall to pieces?

My family doc then just said talk to your Endo about it.. I really don't know if she will change your meds to something that is so hard to control and so "unregulated" and whatnot... cancer patients who need to follow strict guidelines don't take that stuff... it's for people who have thyroid problems and HAVE a Thyroid, not for people who have none at all.....
I said OKAY.. I will chat with my Endo doc then. SO, there ya go! Oh , and I forgot.. I asked her WHY I don't have my T3 and T4 and Reverse T3 or whatever and all THAT stuff taken. She said, if you don't have a Thyroid or else she said that if you had cancer, you don't need to even worry about T3.. she said that I was NOT one of the ones who would ever be needing to know that stuff.

I was thinking what the HECK are you saying??? My body needed T3 BEFORE I HAVE MY THYROID taken OUT, now I suddenly don't NEED THAT?? I am no doctor but I think it's crap. A giant load of steaming, stinky crap.

Okay.. so let me hear what you think...should I go to my Endo and see what she says about switching me to NatureThroid? Or see what she thinks about lowering my Levoxyl from 100 to a little different does that would bump my TSH level up just a tad but still in LOW range???

So some people think my dose of Levoxyl is too LOW? My family doc said I take a high dose of Levoxyl so my TSH reading stays almost non existant. You guys are saying my dose is LOW? I don't understand. She told me most people don't take my dose because it suppresses me so it "doesn't grow back". So the higher the number on the meds, the higher my TSH will go?? I am confused. So if I want my TSH to be a 2, I would have to take a 175 Levoxyl instead of my 100??

With a TSH of .54, am I then considered hyPO or hyPER thyroid?? She has me ALL confused. She said if they change my meds I am going to get much more tired and lethargic. Is she saying that at .54 I am in a hyper state? HELP , Please!!!!

[joplin1975]

Ok, one thing at a time...

When everything is properly functioning, your liver converts T4 to T3. The idea with synthetic T4 drugs is that it works well for people who convert. Some are more efficient than others. So, the question I think everyone if urging your to answer is: are you converting? The only way to figure that out is to run a free T4 and free T3 test.

Yes, post-cancer people want a suppressed TSH, but TSH only won't tell you the whole picture. Switching to combo meds can actually be pretty dangerous *if* you don't need the added T3. So, the focus shouldn't really be on switching, but on proper testing.

Yes, 100 mcgs after a TT is pretty low. When I was on 100 mcgs, my TSH was in the 40s. I'm on 137 now and like that dose a lot. But, again, everyone is different.

Based on TSH alone, it looks like you are hyper, but I'd bet there are more things going on and we can't tell by TSH alone. When do you see your endo again? You really, really need to get tested.

[Andros]

AM I CRAZY???

Okay, so I went to my family doc today for a UTI and while I was there, showed her a BAG OF HAIR that fell off my head during my hair wash last night. NOT including what went down the drain, of course. She wasn't surprised at all. I then discussed my ENDO doc and how I think I am not getting adequate treatment... if you recall I am post papillary cancer and slowly going BALD from Levoxyl and was told it's FINE, I'm FINE, the world's fine, etc.

People on here take Armour and NatureThroid and I wanted to know if I COULD TRY that to maybe help me keep my hair and my sanity and feel possibly better.

This was her response. She said NO. Armour is NOT for people who had cancer! Armour is "not regulated" very well.. it varies greatly from batch to batch and that "stuff" was recalled recently because of it and it just now back on the market.... and I then said that I read on the NatureThroid website they their stuff does NOT vary at ALL and is very high quality and what not.

Again she said that "cancer" patients can't take that chance.. on "your cancer coming back" ... you wanna keep your readings LOW so it does not recurr. Your levels need to be low, like between .75 and 2. I said OKAY, then why is MY level .54 and WHY is that okay? If I am going BALD, then that is not OKAY. Why can't we bump me up in my readings to maybe a 1 or a 1.5 or something? It would still be in the "low" range and maybe my hair would stay on then.???

She looked at me like I was speaking in tongues. She said that she knows my Endo doc DOES prescribe Armour, but she is SURE that she does NOT perscribe it to people who have had cancer. It's NOT a good idea, you do NOT want it coming back!

This is where I was like WHAATT the HEECCKK??? If my Thyroid DOES start to grow back, it's not going to have CANCER IN IT!!! You don't GET cancer from a slightly higher LOW TSH level!!!!! My Endo told me I will NEVER have cancer again in there. It was miniscule and contained and a miracle in ITSELF that we even KNEW it was there...and then my Endo doc she said " you do know, that if your thyroid does start to grow back, it certainly would NOT be cancerous.... I said I know.

SO, Okay.. what are the percentages of people that have it removed and then it grows back? What if it does? Will I die? Will I fall to pieces?

My family doc then just said talk to your Endo about it.. I really don't know if she will change your meds to something that is so hard to control and so "unregulated" and whatnot... cancer patients who need to follow strict guidelines don't take that stuff... it's for people who have thyroid problems and HAVE a Thyroid, not for people who have none at all.....
I said OKAY.. I will chat with my Endo doc then. SO, there ya go! Oh , and I forgot.. I asked her WHY I don't have my T3 and T4 and Reverse T3 or whatever and all THAT stuff taken. She said, if you don't have a Thyroid or else she said that if you had cancer, you don't need to even worry about T3.. she said that I was NOT one of the ones who would ever be needing to know that stuff.

I was thinking what the HECK are you saying??? My body needed T3 BEFORE I HAVE MY THYROID taken OUT, now I suddenly don't NEED THAT?? I am no doctor but I think it's crap. A giant load of steaming, stinky crap.

Okay.. so let me hear what you think...should I go to my Endo and see what she says about switching me to NatureThroid? Or see what she thinks about lowering my Levoxyl from 100 to a little different does that would bump my TSH level up just a tad but still in LOW range???

So some people think my dose of Levoxyl is too LOW? My family doc said I take a high dose of Levoxyl so my TSH reading stays almost non existant. You guys are saying my dose is LOW? I don't understand. She told me most people don't take my dose because it suppresses me so it "doesn't grow back". So the higher the number on the meds, the higher my TSH will go?? I am confused. So if I want my TSH to be a 2, I would have to take a 175 Levoxyl instead of my 100??

With a TSH of .54, am I then considered hyPO or hyPER thyroid?? She has me ALL confused. She said if they change my meds I am going to get much more tired and lethargic. Is she saying that at .54 I am in a hyper state? HELP , Please!!!!

You may be in need of a better informed doctor here. Your TSH needs to be suppressed. Where it is at is good. What we need to know is where your FREE T3 is. That is your active hormone.

Please read..........

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

http://www.drlam.com/articles/hypothyroidism.asp?page=2#diagnosis: standard laboratory test

If you "need" Armour; it is wonderful. When you get a FREE T3 test, we will know more. There is no sense in continuing to raise your Thyroxine replacement "if" you are not converting.

Wonder if your surgeon can refer you to a doctor that comprehends this stuff?

Your current doctor is very scary. W/o sufficient FREE T3, you suffer a slow death. Read up on this stuff and be an informed patient.

And incidentally; most of us who no longer have a thyroid do in fact require exogenous T3 added to the mix of thyroid replacement.

T3 is called Triiodothyronine in case you want to do some research.

http://i961.photobucket.com/albums/ae100/aienma/Random%20Gifs/hug-me-gif-complete.gif

[Butterflyjkg]

I was at my family dr. today and she doesn't want anything to DO with my Thyroid stuff really.... she didn't even suggest any more tests for me... she pretty much just said go to talk to my Endo about it. I had my Thyroid out on Oct 18 and started meds about a week after that... so.. my tests were when I was probably on meds for like 2 weeks. I have had NO testing at all since Nov 22... and they aren't planning to do anything until I go back in April and then I only get TSH and Thyroglobulin. Sounds FISHY to me.

[joplin1975]

Yes, I think you'll want to find a new doctor. I can understand the GP not wanting to tread on the endo's turf (politics happen in medicine too!), but your endo is not monitoring you properly at all. I'd find a new endo and/or a new GP who feels confident enough to treat thyroid issues.

[Octavia]

Ditto what the others have said after your long post, and I'll add a few thoughts.

First, I have my doubts about the accuracy of your TSH reading because it was soon after your surgery, and you had not been on your Levoxyl for the requisite 6 to 8 weeks. You need a more current reading.

Second, 100 mcg is a low dose (I'm probably the person you're referring to who mentioned it before). I am female, average size (weight 125ish), and my ENT started me out at 150 mcg, which turned out to be a very good dose TSH-wise, but because of heart palpitations, they've since lowered me to 137...I'm due for new labs next week. Here's what they're checking (I have the lab orders right in front of me):

- TSH
- T3 Total
- T4 Free

Also on the same order, but crossed off for this time is Calcium and Thyroglobulin Panel (Tumor Marker and Antibody Level). This is a standard lab order "worksheet" from my radiation oncologists office for post-cancer patients...they just circle what they want included in the current order, and cross off what they don't.

And the other thing I wanted to mention is just a bit of an explanation about how TSH works in relation to your T4 drug...generally, as your T4 drug increases (Levoxyl), your TSH would go down. So if they did agree to try and raise your TSH level, then they'd decrease your dose just a bit, but again, I have serious doubts about the accuracy of your most recent TSH results, and I don't think any decisions should be made until you get a new reading. You could very well be hypothyroid by this point, given that you are only taking 100 mcg, and that, my friend, is to be avoided at all costs...that is what will "encourage" any rogue thyroid cells to multiply, whether they are cancerous or not.

Hope that helps! :)

Please, please, please get new labwork done...can you call your doc's office back and ask for an order?

[Butterflyjkg]

I just called my Endo.. told them I wasn't feeling right and I would like an appt... the soonest appt. i could get is at the END of March. I said I am having a problem (going bald and feeling like I can explode) and I really need to see the dr. She said sorry... I can tell her to call you?? I said great!

I am going to ask her to give me a script to have a complete blood work up.. with the T3s and T4s and all that stuff. What if she shrugs me off? The last test I had was a week BEFORE Thanksgiving.. I was on my initial start up dose of 100mcg of Levothyroxine then and I am still on that dose. Like I said, I take 100 and my TSH is almost non existant at .54. That was before Thanksgiving.. I have NO idea what it is now. I'm just feeling a little wacky today.. almost like I am half drunk.

I am still BAFFLED as to why they have to keep ME supressed. I mean I get the theory behind it but it still doesn't make sense. My nodule was smaller than a grain of rice and withIN that nodule there were papillary cells. The size of the cells wasn't .8cm... the nodule was.

The Endo explained that it was teensy-weensy and just remarkable that anyone even knew I had it... and it would NOT be back and it was fully encapsulated, etc.... and I will never have to give it another thought!! Okay, so if I am CURED and it's all GONE, why must I be supressed to BELOW the acceptable " Low" scale?? I don't wanna be a .54... what is the harm of making me higher if it will make me feel better???!! I don't understand it all.

I would be shocked if I was still at .54 where I was back in November. Who knows, maybe I am just the same, but either way I don't think I should be left alone, unchecked until the middle of April... so.. if the doc calls me, I am going to say I want all those labs done now, please...???

[Octavia]

I would be shocked if I was still at .54 where I was back in November. Who knows, maybe I am just the same, but either way I don't think I should be left alone, unchecked until the middle of April... so.. if the doc calls me, I am going to say I want all those labs done now, please...???

Please tell her, in the nicest way you can, that it just plain doesn't make any sense to only have your labs checked once after a total thyroidectomy, ESPECIALLY when that one time was so soon after the surgery, when you had not been on your replacement drugs long enough for them to "get established" in your system.

I, too, will be shocked if your TSH is anywhere near .54, honestly. I am totally open to being wrong, but I just don't see that happening here. My gut feel is that you are not feeling right because you are hypo (not even close to suppressed)...but I will be happy to be wrong!

I truly don't think that being suppressed is what's making you feel the way you are feeling and making your hair fall out (because I doubt you are suppressed). I think you need MORE hormone, not less, but only new labwork can answer that question. Regardless, though, I still think you're better off trying to titrate on your current drug, rather than switching drugs AND dosages at the same time...that will throw your system into a loop, worse off than where you are now, IMHO.

You are not out of line to request new labs...be a strong advocate for yourself, and get what you need! May the force be with you!!!!

:hugs:

EDIT: P.S....if for some reason, the doc won't give you a new lab order, then I think your best bet is to get the labs done yourself, at your own expense, using the links that were provided earlier in your thread. But try Plan A (through doc) first.

[joplin1975]

Yes, to everything Octavia said. Yes, yes, yes.

FWIW, I'm getting labs on Thursday (the 6th time since surgery). My hair started dumping right before my last labs, which had my TSH at 7.88. I'm guessing the dumping, for me, occurs somewhere between 4 and 8 (ish).

[Octavia]

My hair started dumping right before my last labs, which had my TSH at 7.88. I'm guessing the dumping, for me, occurs somewhere between 4 and 8 (ish).

Ah...good to know! I was wondering about this...

[webster2]

I had papillary cancer and take nature-throid. Levo wasn't working for me. I started out at 125 mcg. I feel much better on NDT. I am losing less hair. My nails are the best they have been in ages. My skin is still dry. The itchy ears have gone away. I didn't even know that was a symptom. My brain fog is gone. I am still chunky but I am a happy camper, couldn't say that awhile back! :) I get blood work done next week so we'll see what the numbers say. Although, my doctor treats by symptoms too.

[I DClaire]

I got my hair cut today and the hairdresser remarked that I have a lot of new "baby hair" so maybe the threat of baldness has subsided. Considering something else that's happening, hair loss might not have been all that bad - I am gaining weight like nothing I've ever experienced in my entire life!

My nails are gorgeous! I even painted them last Saturday. :anim_63: I, too, have never had such healthy fingernails.

Something has got to change with all this sudden weight gain though - I managed to squeeze into a favorite pair of jeans tonight but I'm honestly afraid the zipper might break.

[Butterflyjkg]

Ah, yes... to LAUGH or to CRY??? I will be honest here, I feel like I am losing it. Not totally, but I am slipping a bit.

My Endo did NOT return my call... not yet anyway. I work at a hospital and I did see my ENT surgeon yesterday. I told him I was feeling very strange. I am tired but can't stay sleeping. I am a nasty beyotch... very irritable. I was very nasty to my daughter the other day because I needed to know RIGHT NOW what seasoning she wants on the CHICKENNNN!!!!! I have zero patience... my hair is raining off my head. I feel drunk... or at least a little buzzed. My vision doesn't seem right. It's like I'm in the sun and I can't see right.
SO.. my ENT said when did your Endo do your last labs?? I said SHE DIDNT!! YOU did my last labs post surgery! He said WOW.. and he will call me in a script for labs. I said T3s???? He said.. well.. T4 is the most important one.. so.... (GRRRRRRRR!!) so he faxes me my script and it says T4 and TSH.. GRRRRRRRRRRRRR!!! I was half tempted to put a check mark next to T3 but I didn't wanna press my luck. I was REALLY tempted though. I thought now HOW HARD is it to just mark that box for me so I can have some piece of mind?? It's not like HE has to pay for my tests!!??? WHAT is the big deal??!!!!

Okay.. I know I have asked and some have told me but I am still getting confused...

The scale of TSH goes like this....
0.....1........2.....3....4....5.....6......7..... .8......9......10.....
<------ is THIS the HYPER end??....and ---> THIS the hyPO end???

So my FIRST and only reading was .54.....on the left end of the scale.. the HYPER?? end???

My ENT said "maybe you are hyper??... you should have been checked again...what dose are you on now? " I said the same one YOU started me with after surgery...100mcg!

So you guys think I am probably hyPO since I am only on 100mcg of Levoxyl.....

I said to my ENT.. can you raise my meds?? he said " you mean can I LOWER it??" ????? I said WHATEVER...

You guys on here say RAISE.. he says LOWER...I think I am losing my mind.

So the "higher" the number.. meaning 137mcg as opposed to 100mcg.. the smaller the suppressing of the TSH? SO as the number on the pill goes UP.. the supressing goes down, meaning it does NOT supress as much ????

I'm sorry.. I probablly sound like a moron. All I know is I feel HORRIBLE.. this morning I was flippin OUT trying to find a shirt that I could pull the sleeves up high enough to get blood work....I ironed another shirt...NO! NO! Hate it!... get another shirt out.. meanwhile I am almost late now.... NO NO!! hate this shirt too!!! I finally found one and left for work and was like a maniac. It's snowy and icy here and I was like " hurry up!!!! don't you people know I have a job to get too!!!????"

I really did good when I realized that I was out of wiper fluid . You would have been proud of me! I bit my lip and was a good sport... I only thought ONE time about ramming the VOLVO in front of me because they weren't doing 40 on the slippery road and I was LATE!!!.. Okay, okay! I thought about ramming them twice. I lied. :tongue0013:

P.S. I just had my bloodwork... of course there was no T3's in it mind you.. but I will have to make due with what they WILL give me now....until I find another doctor who gives a hoot about me......AND my T3!!! :hugs:

[Octavia]

Okay....breathe...

Yes, your TSH scale is correct...

0.....1........2.....3....4....5.....6......7..... .8......9......10.....
<---HYPER end....and ---> HYPO end

On the HYPER end, your TSH is low, probably lower than 1.0. Since you want your TSH to be at least somewhat suppressed, right around 1.0 might be okay for you, depending on how you feel. But if you are REALLY HYPER, then the adjustment would be to change you to a LOWER dose of Synthroid (or Levoxyl, or whatever T4 you are on).

On the HYPO end, the adjustment would be to INCREASE your Synthroid/Levoxyl.

The feelings you are describing sound more hypER to me, but with the amount of Synthroid/Levoxyl you are on, I am still inclined to think you are hypO. Let's wait and see what the labs show, and we'll know for sure! I'm so glad you had those done!!!!

When will your lab results be available?

:hugs:

Okay...one more thing...here's a nice side-by-side comparison of symptoms for hyper and hypo. But let's see what the labs show, too.
http://www.healthhype.com/hypothyroidism-vs-hyperthyroidism-differences-in-signs-symptoms.html

[Butterflyjkg]

My labs will probablly be in by tomorrow some time. Since I work at the hospital I can just walk down and get them.

[Andros]

My labs will probablly be in by tomorrow some time. Since I work at the hospital I can just walk down and get them.

Will be looking forward to viewing the results and the ranges!

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[Butterflyjkg]

and the results are.... drum roll please.... NORMAL! My TSH is 1.49 which is good I guess and my T4 is .98 . Okay, so I am in "normal" range. So why do I feel so strange off and on? I guess I'm just Friggin' nutz! :tongue0015:

I don't feel bad today.. I slept good last night and I am not full of rage this morning. Perhaps I just feel icky from the Levoxyl itself and not my ranges? I don't feel horrible, like I said.. just strange.

Like I said, they won't test my T3. My next appt. for my Endo is the middle of April. Should I just chug along and then just bombard my Endo with reasons WHY I want my T3 checked and the whole NatureThroid thing? I just want to know that I am being treated in the best way I can.

Perhaps I will pay to have my T3 done myself. Maybe by April I can sport a new wig to go to the Endo??? Maybe the hair loss will stop soon.. or at least slow down??? Little encouragement here.......

[Octavia]

oooohhhhhh....I am so disappointed, in a wierd way! Not that I wanted to see "bad" lab results, but I was sure hoping these labs would show that something needed to be changed. Ugh.

Man, I just don't know what to tell you. Maybe others will have some words of wisdom to share. You should not be feeling the way you feel though...but hopefully the hair loss will stop soon. (Mine stopped after about 4 months.)

[Butterflyjkg]

HA! That's funny! I was hoping for some wonky results too.. something that would be cut and dry.

I never was one for "cut and dry" though. Maybe I'm just getting old and falling apart! ? I don't think so though.. I mean I AM getting old and falling apart, but I am also feeling strange. Maybe I am just getting old and strange....

My ENT just walked by with this HUGE smile and he said "your tests were NORMAL!!" I said I KNOW, it's GREAT!!!

He walked away and I was like OKAY.. now what? I guess nothing. I will hope I start to feel better and my hair stops falling out soon. I am almost at my 4 month mark for taking meds. Surely it will stop soon??

I am sitting here at work ( not working too much) and I have to squint, like I have been up for 36 hours and it's blinding sun in here. It's strange...I think I need to start wearing shades in here.. my boss would love it!! :cool:

[Octavia]

Okay...regardless of what the lab tests are showing, your symptoms concern me...the mood/irritability, the ongoing hair loss, and they eye issues. Especially the eyes. Did you clearly explain these symptoms & side effects to your doctor?

The only one I can really relate to is the hair loss. For that, I would say give it a few more weeks, and if it doesn't slow down dramatically, it seems like you've given this drug a fighting chance, and it may be time to switch, either to a different T4 drug, or something else altogether. For the eyes, that seems like it's worth a visit to the opthalmologist to see what's really going on there - that's not something you want to mess around with or "let it go" for long.

What are your thoughts about all of it? (Besides feeling like you're getting old and strange?)

[Andros]

HA! That's funny! I was hoping for some wonky results too.. something that would be cut and dry.

I never was one for "cut and dry" though. Maybe I'm just getting old and falling apart! ? I don't think so though.. I mean I AM getting old and falling apart, but I am also feeling strange. Maybe I am just getting old and strange....

My ENT just walked by with this HUGE smile and he said "your tests were NORMAL!!" I said I KNOW, it's GREAT!!!

He walked away and I was like OKAY.. now what? I guess nothing. I will hope I start to feel better and my hair stops falling out soon. I am almost at my 4 month mark for taking meds. Surely it will stop soon??

I am sitting here at work ( not working too much) and I have to squint, like I have been up for 36 hours and it's blinding sun in here. It's strange...I think I need to start wearing shades in here.. my boss would love it!! :cool:

Did you get your ferritin checked as suggested? Also, it would be nice if you could get the FREE T3 done.
http://www.healthcheckusa.com/

And, I do agree w/Octavia. It may be a very smart move to see a Board Certified Ophthalmologist.

[Butterflyjkg]

Well, I don't feel quite as irritable as I did. My hair is still raining off my head... as a matter of fact I broke down over it last night . I just can NOT take it. The psychological part of it is just like Chinese water torture....

I am having more and more muscle twitches.. not like full blown Charley Horses as they say, but little twitches... mostly in my face and eyes. The sensitivitiy to light is there for sure...

I feel so ignorant for complaining. After all I did survive CANCER and all and I am DAMNED grateful!!! I feel like they just want to stamp "SHUT UP" on my forehead.... THEY being my doctors.

I'm tired of feeling sad and down and like a big ole Sad Sack. I'm really not the Sad Sack type.. and after all NOBODY LIKES A SAD SACK!!!! :party0045:

My husband agreed that it is time to find a new doctor... or at least get IN with my doctor (who is booked til end of March) and tell her exactly how I feel and discuss things and ask for another med or MORE tests.

Now I called my Endo LAST Tuesday and she never did call me back. They couldn't "get me in" so she was going to call. To me, when you call and say you are NOT feeling well at all and they say she will call, if she doesn't, she STINKS as a doctor. She could have at least had the nurse call and ask me what is up..... I don't know if I should give her another chance since I know she does prescribe natural drugs... or say the heck with her and start new? What do you think? Ditch her and move on or go back and lay it all out???

Thanks for tolerating me on here. I appreciate it very much. hugs3

...and NO I didn't have my ferritin? checked or anything else but TSH and T4, they just won't do it for me. I may have to go the pay out of my pocket route and do it on my own....

[Butterflyjkg]

Okay, so I finally got an appt. with my Endo for this Wednesday. I am going to ask her some questions , mostly about my blood work or lack of. Mostly I want to know why I am never had my T3's tested EVER and I want to have a whole blood work up done...

TSH, T3 & 4 , calcium , Ferritin?... what else? This is my chance to ask all the things that I didn't realize before. I am going to ask about Nature Throid or Armour too.

[Andros]

Okay, so I finally got an appt. with my Endo for this Wednesday. I am going to ask her some questions , mostly about my blood work or lack of. Mostly I want to know why I am never had my T3's tested EVER and I want to have a whole blood work up done...

TSH, T3 & 4 , calcium , Ferritin?... what else? This is my chance to ask all the things that I didn't realize before. I am going to ask about Nature Throid or Armour too.

FREES!!! I am going to be the teacher here! LOL!

FREE T4 and FREE T3

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

http://www.drlam.com/articles/hypothyroidism.asp?page=2#diagnosis: standard laboratory test

Definitely FERRITIN

Ferritin http://www.thewayup.com/newsletters/081504.htm
(should be 50 to 100; the closer to 100, the better)

Please read the links; the info will help you bolster your case.

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