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Discussion Starter · #1 ·
I posted this in another topic page, but I thought I would post here. After having terrible side effects from what I thought was too much Synthroid, my doctor allowed me to stop taking it temporarily. That was an endocrinologist. I have since just been allowing my primary care doctor to be in charge of my thyroid care because I honestly do not like the 2 endos I have seen. They had diagnosed me with acquired hypothyroidism when in fact I have subclinical. Here are my latests numbers - not on any thyroid meds.

TSH: 10.01 (ref range 0.45-5.33)

FT3: 3.0 (ref range. 2.0 -4.4

FT4: 0.65 (ref range 0.61-1.12)

I had been taking 0.88 mcg synthroid before that and my TSH was 2. I had not had my FT3-4 checked in sometime, but those were always in the "normal" range on Synthroid and off. My cholesterol is 175 which is in the range it has been for the last 10 years. I am 37 years old.

I feel a lot better overall since I have stopped taking Synthroid, but I still worry that my TSH is too high - but I have learned that TSH is not the only thing to go by when talking thyroid labs. My doctor is re-checking my labs in February.

I do have to admit that I suffer from diagnosed anxiety and I am worry about everything. I feel sometimes like there is a flutter in my neck, but honestly do not know if it is my mind playing me or if something is actually going on. I am wondering if I should ask my doctor to put me on 0.50 mcg of the meds or switch me to a different brand. I also don't know if I should ask her about this now or wait till February. Please be kind in your replies because of my anxiety! Thanks.
 

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Were you taking brand name Synthroid or levothyroxine (generic). Sometimes taking a different one can help. I'm 4 days into synthroid brand name. Too early to tell if it will help. But I do feel like it probably has better fillers than the generic. However, it is expensive. If you were having axiety bad on .88 I'd ask to lower it to something like .75 and see how that goes. But I do think a different brand would be worth trying. Maybe there was something in that one you were on that wasn't agreeing with you.

Your TSH and FT4 are not great for sure. Anxiety can be a side effect of being hypo or hyper. If you can get balanced it could go down to a normal level. My anxiety was crazy high when I was on too much thyroid medication, but it wasn't great when I was on too little either.

It's not all in your head. I've had the weird feelings in my neck also....like a burning in the thyroid area.

Here is what helped me. I focused on getting good nutrition. I take a quality multivitamin. I also take Vitamin D because I was deficient. You should check out your Vitamin D levels and get them up if they are low. I changed my diet (not saying you have to, but consider it). I cut out Gluten, Dairy, Soy, Corn, Processed Sugar (this one may help with anxiety). Dairy may or may not be an issue for you, but I have a family history of issues with it. Just make sure you get enough calories if you do this. Low calorie diets cause a lot of issues with this issue. In general eating real foods and cutting out processed food. Try not to get crazy about food, but I've found this helped me a good amount. eating food with Magnesium could help a bit. Some people also cut out nightshades....I may try that for a bit. Cut things out and then slowly reintroduce some to see how you feel.

In general, people seem to swear by cutting out gluten if you have an autoimmune decease. You want to get your TG and TPO antibodies tested to confirm you have hashimotos. Most likely you do since it's the cause of 90% of hypothyroidism.

Take warm baths and relax. I decided to go to a therapist for my anxiety and I take Ativan on-demand if it gets bad. But since I've got my thyroid medication working better I've been able to go many days without taking the anxiety medication. I think the diet change helped with calming down the auto-immunity also.

I do think you need to get on some sort of medication. You will have a lot of weird symptoms and anxiety until it gets balanced.

The name brand costs me $60 for 90 days. But that may be worth it if it works better. I know some people just seem to do better on one or the other. So worth a try.

Stick with it and do the best you can. It takes a lot of time and it's hard to be patient. This forum can be good support! A lot of us have gone through the same thing (and still are).
 

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TSH lags behind and does not reflect what's really going on.

You need to be patient and stay on one dose for awhile.

Have you ever been tested for autoimmune thyroid disease?

It can make it very difficult to become stable on thyroid hormone.

As for diets and vitamins, yea they can't hurt to try but from my experience all I got from doing this was a smaller bank account.

All I know is it takes months to years to feel close to the way you used to feel.

Hashimoto's thyroid disease has changed my life for ever and I'll never feel exactly the same.

Symptoms of thyroid disease make you feel so strange and the long term treatment would cause anyone anxiety.

Once you get on track with your treatment that works for you that anxiety will drop away.

It did for me.

GOOD LUCK...….
 

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Were you taking brand name Synthroid or levothyroxine (generic). Sometimes taking a different one can help. I'm 4 days into synthroid brand name. Too early to tell if it will help. But I do feel like it probably has better fillers than the generic. However, it is expensive. If you were having axiety bad on .88 I'd ask to lower it to something like .75 and see how that goes. But I do think a different brand would be worth trying. Maybe there was something in that one you were on that wasn't agreeing with you.

Your TSH and FT4 are not great for sure. Anxiety can be a side effect of being hypo or hyper. If you can get balanced it could go down to a normal level. My anxiety was crazy high when I was on too much thyroid medication, but it wasn't great when I was on too little either.

It's not all in your head. I've had the weird feelings in my neck also....like a burning in the thyroid area.

Here is what helped me. I focused on getting good nutrition. I take a quality multivitamin. I also take Vitamin D because I was deficient. You should check out your Vitamin D levels and get them up if they are low. I changed my diet (not saying you have to, but consider it). I cut out Gluten, Dairy, Soy, Corn, Processed Sugar (this one may help with anxiety). Dairy may or may not be an issue for you, but I have a family history of issues with it. Just make sure you get enough calories if you do this. Low calorie diets cause a lot of issues with this issue. In general eating real foods and cutting out processed food. Try not to get crazy about food, but I've found this helped me a good amount. eating food with Magnesium could help a bit. Some people also cut out nightshades....I may try that for a bit. Cut things out and then slowly reintroduce some to see how you feel.

In general, people seem to swear by cutting out gluten if you have an autoimmune decease. You want to get your TG and TPO antibodies tested to confirm you have hashimotos. Most likely you do since it's the cause of 90% of hypothyroidism.

Take warm baths and relax. I decided to go to a therapist for my anxiety and I take Ativan on-demand if it gets bad. But since I've got my thyroid medication working better I've been able to go many days without taking the anxiety medication. I think the diet change helped with calming down the auto-immunity also.

I do think you need to get on some sort of medication. You will have a lot of weird symptoms and anxiety until it gets balanced.

The name brand costs me $60 for 90 days. But that may be worth it if it works better. I know some people just seem to do better on one or the other. So worth a try.

Stick with it and do the best you can. It takes a lot of time and it's hard to be patient. This forum can be good support! A lot of us have gone through the same thing (and still are).
Thanks so much. I was on the name brand Synthroid- which is not expensive with my insurance thank goodness. I think I am going to try to call my doctor on Monday to see if she will give me a script for .75 or .50 Synthroid. I have been off of any Synthroid since the beginning of October. My anxiety had gone way down for a while but in the past two weeks or so it has gotten worse. My dr. said she was OK with my TSH being around 10 if I felt good, which I had been. She is testing me for antibodies in the next round of bloodwork. I do take an occasional Xanax for my anxiety but I do not rely on them. I had anxiety before I had thyroid problems. I had been on Synthroid about 2 years but felt really lousy on it - tired and just "off" and had headaches and my menstrual cycles were wacky. My diet is actually decent and I do not eat a lot of bread/pasta and I work out a lot. I do take a high-quality multivitamin as well that has a lot of Vitamin D in it, but my vitamin D levels have not been checked. Thanks for your help and comments. You are right about these boards being a good support system.
 

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Discussion Starter · #5 ·
TSH lags behind and does not reflect what's really going on.

You need to be patient and stay on one dose for awhile.

Have you ever been tested for autoimmune thyroid disease?

It can make it very difficult to become stable on thyroid hormone.

As for diets and vitamins, yea they can't hurt to try but from my experience all I got from doing this was a smaller bank account.

All I know is it takes months to years to feel close to the way you used to feel.

Hashimoto's thyroid disease has changed my life for ever and I'll never feel exactly the same.

Symptoms of thyroid disease make you feel so strange and the long term treatment would cause anyone anxiety.

Once you get on track with your treatment that works for you that anxiety will drop away.

It did for me.

GOOD LUCK...….
Thank you. I am being tested for thyroid antibodies in my next round of blood work which is in February, so I don't know for sure if I have hashimoto's. I hope that I can get a treatment and stick with it. In the last 2-3 years I have been on anywhere from 0.25 to 100 mcg of Synthroid. It would be nice, if I had to take it, to have a consistent dosage long-term. I appreciate your kind words and help.
 

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I agree to an extent with going with what makes you feel good. Still those numbers seem to be off and I'd think it would be best to get them in better shape for health reasons. Do you have any other symptoms going on besides anxiety? Such as, do you have any constipation and or GI issues, feeling cold when everyone else is warm, weight gain or having a hard time losing weight, etc?

I'm a guy so I can't speak for the lady specific issues.

Usually they start you at a lower amount of medicine and work it up slowly. Because the hyper side of it feels worse likely (at least to me it does).

Good luck!
 

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Discussion Starter · #7 ·
Not really any other symptoms aside from the anxiety and the weird feeling in my neck and last night I felt a weird pain in my neck that lasted like a half a second. I have the occasional heart palpitation as well, which I know is a symptom of being hypo. I don't have anything like constipation, GI issues, feeling cold or gaining weight or losing hair, having dry skin, etc. I am the person in the room that is always overheated haha. Thank you for everything. I will post again after I (hopefully) talk to my doctor's office on Monday.
 

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Here are my latests numbers - not on any thyroid meds.

TSH: 10.01 (ref range 0.45-5.33)

FT3: 3.0 (ref range. 2.0 -4.4

FT4: 0.65 (ref range 0.61-1.12)
How long after you stopped taking Synthroid were these labs drawn? Did you take Synthroid prior to the lab draw?

Have you ever had an ultrasound of your thyroid? Thyroglobulin antibodies?

I'll assume they will be testing TPO antibodies but you may want to ask for thyroglobulin antibodies as well.

Having optimal Ferritin, D and B-12 levels helps when adding thyroid hormone to the mix.

Taking your replacement hormone with a full 8oz glass of water?

I also struggled with anxiety prior to and during my treatment - now with labs falling somewhere between 1/2-3/4 for both FT-4 and FT-3 and a TSH of .008 I have rarely experience anxiety

Your FT-3 is on the high side for such a low FT-4 which means you are a fantastic converter. Do you have any lab results while taking your thyroid hormone replacement you could share?
 

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Discussion Starter · #9 ·
Lovlkn- thanks for your reply. My dr. is going to test me for TPO and Thyroglobulin antibodies in February. I have not had an ultrasound - my doctor does check my neck though and everything feels normal to her. My neck pain only recently started to bother me. The lab work I posted above was from Mid-December. I have not taken any Synthroid since mid-October and did not take any the day the labs were drawn.

When I was on Synthroid (yes I took it with a full glass of water on an empty stomach) 100mcg my TSH was 0.5 and I was experiencing migraine headaches A LOT - like debilitating ones so my dr. put me on 88 at my request so I do not think 100 mcg is the right dosage. I still felt odd on 0.88 - maybe because I am such a good converter as you said. If I had a TSH as low as your's I would be in constant migraine mode. Like I said above, i am not experiencing any other Hypo symptoms other than the weird flutter in my neck and sometimes a rapid heartbeat -- but that may be from my anxiety. I feel fine other than that - better than I did on any thyroid replacement.

You are so knowledgable, do you think that because I am such a good converter perhaps a low dose of Synthroid would be better than even the 0.88 like 0.50 or 0.25? I am going to try to call my doctor tomorrow but it being New Year's Eve, I am not sure if she will be there (the office is open but she may be on vacation still from the holidays). I am hoping that she will prescribe me a lower dose of Synthroid, but honestly could use some help as to what to ask her for! Thanks.

My TSH was 2.4 on 0.88 mcg Synthroid.

My FT4 was 1.0

My FT3 had not been tested since 2014, so I do not have a result that would show what it was on 0.88mcg (when I was not on meds and it was 3.1)

Since switching to my primary care doctor for my thyroid care, she is actually ordering more blood work than the endocrinologist did, which I find amusing.
 

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One thing to consider is everyone is different. My whole family has this issue and each person reacts differently. All of them are on the generic levothyroxine. My oldest sister has been on it since she was in her 20s and has made no other changes to her lifestyle. While she seems to be in the best shape, she's currently on the highest dose of medicine (137) and it has consistently gone up over the years (she's 50 now). Meaning, her thyroid keeps getting destroyed little by little.

My other sister has been on it for a good amount of time but has never felt very good. Always having anxiety, depression, constipation, food sensitivities, etc. I got her onto alternative doctors which may be good or bad. There are some good ones, but many just push expensive supplements (I got suckered on a few). She said she does seem to do much better when she cuts out gluten, but she has a hard time sticking to it.

My father doesn't take his medicine properly (with coffee and food). But his numbers say he's OK. However, he has type 2 diabetes and dementia. Though I think the dementia could be because he takes xanax everyday for 20 years. So obviously he's had anxiety for a long time.

My mother is allergic to dairy, and my sisters were all sensitive to it. She's considering trying gluten free to see if it helps. As far as thyroid she's been on the same dose forever...so it seems like her's has not progressed over time. She's in her 70s.

Same goes for medicine. What works for one person may not work for others.

If your conversion is good, a T4 medication maybe best. Mine doesn't appear to be too good, but I want to try out the name brand first. If that doesn't work I may try to get a little T3 added later.

Endocrinologists do seem to stink a bit for this issue. Kind of weird that they do. I'm on number 4 and none have been great to deal with. My current one seems to be the best of the 4, but she still won't test for anything but TSH. Blah.
 

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More family with the issue:

My second cousin takes a NDT of some sort (natural pig thyroid medicine). She was taking Westhroid but had issues with supply at some point. The other one she was given was too strong and she had bad hyper symptoms. She's got it more dialed in now. She goes to an alternative doctor and it sounds a bit hokey, but swears by it. So far my experience is alternative doctors are just as hit and miss as endocrinologists. I like that they take a holistic view on the issue. But I do believe many are rip offs. One guy was going to do all kinds of weird treatments for 4000 dollars and give me 800 dollars in supplements. Could it have helped me? Maybe. But I think it was a complete ripoff. The other one I went to for a bit. She was much more affordable, but pushed liver and adrenal supplements. Those didn't seem to help and I couldn't even handle the adrenal supplement. She also didn't test for anything and just assumed I had a gut infection. Was going to give me 5 different supplements for a gut infection. I said no. However, she did order complete thyroid tests and I am grateful for that. I also found a very good fishing spot near her practice.

An older cousin at Christmas said she also had it and has terrible insomnia.

It's very common on both sides of my family...so I had a very high chance of getting it.

Does anyone else in your family have it? It could provide some insight into how they handle it. But as I said, everyone is different.
 

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Discussion Starter · #12 ·
GOGOLO13- thank you for the insight. My aunt on my mom's side has hypo - but she has been on the same dosage for decades and does not have any type of anxiety problem. I do not have any siblings and my mom does not have a thyroid problem. My mom does have anxiety, though, but not terribly bad. I have no idea about cousins, etc. because I am not close with my family. My mother's other two sisters have passed away - not from any thyroid related things. My mom is 71 and the baby of her family so her sisters were much older than her. My father's side is completely out of the picture and has been for more than 20 years, so I have no idea there. Sorry that I can't provide more family history.

I think I will ask my dr. about putting me on a low-dose of Synthroid - or generic Levo - since my FT4 seems to be super low. I have taken both. If she is going to do it on a trial basis until I get my dosage right, I will probably just get the generic version at CVS month by month. Once I finally get a dosage that works, I will go through mail order and they send me brand name Synthroid even though my doctor does not write "brand specific." Mail order is cheaper, though. $10 for 3 months as opposed to $10 per month at CVS.

To me it is just weird that I don't really have any symptoms yet my labs show Hypo. I wish my dr. had ordered the antibody tests at the same time as she did the other tests earlier this month - she was probably just trying to save my pocketbook though.
 

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I agree with not having the symptoms other than anxiety (which could or could not be related). There are other potential things that can cause TSH to go high. The pituitary gland is what signals TSH so maybe a scan of that would be worth doing. A thyroid ultrasound maybe worth doing also.
 

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Discussion Starter · #14 ·
I do have the weird feeling in my thyroid area, as I stated in my original post. I don’t know if anxiety is a symptom since it’s not really new. It was just worse on synthroid than it has been off of it.
 

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do you think that because I am such a good converter perhaps a low dose of Synthroid would be better than even the 0.88 like 0.50 or 0.25?
Highly likely.

My TSH was 2.4 on 0.88 mcg Synthroid.

My FT4 was 1.0

My FT3 had not been tested since 2014,

so I do not have a result that would show what it was on 0.88mcg (when I was not on meds and it was 3.1)
The ((range within the range)) which is basically 1/2 - 3/4 of the range for your FT-3 result of 3.0 (2-4.4) your "range within range is ((3.2-3.6))

not on any thyroid meds.

TSH: 10.01 (ref range 0.45-5.33)

FT3: 3.0 (ref range. 2.0 -4.4

FT4: 0.65 (ref range 0.61-1.12)
Do you by chance consume large amounts of any particular food or supplement? You mention you work out alot - do you supplement anything?

I had anxiety before I had thyroid problems. I had been on Synthroid about 2 years but felt really lousy on it - tired and just "off" and had headaches and my menstrual cycles were wacky. My diet is actually decent and I do not eat a lot of bread/pasta and I work out a lot. I do take a high-quality multivitamin as well that has a lot of Vitamin D in it, but my vitamin D levels have not been checked.
Anxiety is both a hypo and hyper symptom. Often people feel anxiety with thyroid hormone movement up or down. Resting heart rate is helpful to track when changing amounts or adding thyroid hormone. I've noticed my cholesterol raises when thyroid levels are more on hypo or slightly hypo side. I firmly believe that Optimal Vit D and Ferritin levels are needed to tolerate thyroid hormone - this is my experience and I have been basement low on both Ferritin and D and now maintain 60% on D range and have recently gone over Ferritin levels which I wonder if that's my culprit to a recent hyper bout. B-12 is decent but not optimal now.
 

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Do you by chance consume large amounts of any particular food or supplement? You mention you work out alot - do you supplement anything?
I do take a multivitamin as well as 300 mg of magnesium (for migraines) and a super B complex vitamin that has all the B's in it (riboflavin, biotin, b12, b6, etc) and 500mg vitamin C. I have never been tested for vitamin levels. My multivitamin has vitamin D in it and iron and I drink milk and eat cheese. My iron levels are well within range, but I do not have the exact number off hand. There's no certain food that I eat more of than others, that I can really think of.

The ((range within the range)) which is basically 1/2 - 3/4 of the range for your FT-3 result of 3.0 (2-4.4) your "range within range is ((3.2-3.6))
What are you saying here- sorry but I don't fully understand. Are you saying my TSH should be around 3.2-3.6?

Thanks
 

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How close to your thyroid hormone do you take your vitamins?

Consistency is key - once you add a thyroid hormone all vitamin intake must remain consistent for the best chance of stability. Time of intake, amount bla bla bla all must remain consist as well as time of lab. Welcome to the world of thyroid disease...

Be sure to have hard copies of all lab results - it makes dialing in hormone much easier.
 

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Discussion Starter · #18 ·
I have not been taking my thyroid hormone since October. I did not take vitamins for several days before my blood draw so the B vitamins would be out of my system. When I was on synthroid i took my vitamins several hours after I took synthroid.
 

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You might also consider Tirosint vs Synthroid - its the purest form available

Tirosint is a unique brand of levothyroxine because it contains only 4 ingredients-levothyroxine, gelatin, glycerin, and water-and it is a gel cap, not a tablet. Most medications used to treat hypothyroidism are tablets. These 2 facts demonstrate that Tirosint does not contain sugars, dyes, alcohol, wheat starch (gluten), lactose, or many of the other additives used to make some thyroid medications.
https://www.tirosint.com/why-tirosint/what-makes-tirosint-different/

Doses available...

Capsules: 13, 25, 50, 75, 88, 100, 112, 125, 137, 150, 175, 200 mcg
I would suggest starting with the 50mcg or 75mcg dose and then testing both FT-4 and FT-3 in 6 weeks.
 

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Discussion Starter · #20 ·
I had never heard of that brand of Thyroid meds. I wonder how expensive it is. My doctor put me back on .88 mcg of Synthroid which is what I had been on. I go in 8 weeks to test TSH, T4 and antibodies. I know my T4 is super low right now so I think this is probably the best bet. I felt OK on .88. I think a lot of the symptoms I had are in my head sometimes because I get really worked up about nothing.
 
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