Anyone here have super high TSH (Thyroid) - over 100?

[Anonymous]

Yes, mine was at about 133 a few years ago. I felt fine and my doctor basically said he didn't know how I was functioning (not what you want to hear). After about 8 months my levels stabilized in the normal range and I have been on the same dosage of Synthroid since. I have Hashimotos so it is possible to stabilize even with this. A couple pieces of advice: do not take the generic of Synthroid- there are studies on this and this is one circumstance where brand is better. Also, really watch what you eat after taking the medicine, dairy causes me problems even if I wait an hour.

[Anonymous]

I'm the OP of this thread from last year. Funny to see it revived.

It took a year of intensive management to get my TSH back into normal range. At my last appointment in June 2012 I *finally* was at 1.2, which is the lowest I've been since my initial diagnosis.

I can't say that I feel 100% better, but at least my hair has stopped falling out.

I will say, however, that this whole episode pushed me into a deep chronic depression and now I'm being managed with Cymbalta and an anti-anxiety drug. My therapist is almost certain it was the super-high TSH that was the catalyst to this depression.

[Anonymous]

Anonymous wrote:If only it was that simple, I was diagnosed 14 years ago and they have never been able to get it within normal range. Endocrinologist had me at 725mcg daily and it would not come down. Tsh 563.. imagine the hell i was living. Come to find out my body was not absorbing it. I tried chewing it, letting it desolve under my tongue, you name it I tried it. Now I take 200mcg IM injection daily, that means i take 4 shots daily. Not to mention that I have a hard time getting the supply that I need from the pharmacy and a few thousand dollars a month. Current tsh over 100 and been taking the shots for over 8 months.
I have to laugh when people complain that their tsh is at 100 or below. I live with sever body pains daily and would give anything to have a normal level.
Signed miserable in Nebraska

WOW!! I'm so sorry you have to endure that... I can't even imagine mine being that high. I know how horrible it is to be out of range (below 100)... I don't know if this will help but I'm sure you feel as desperate as I was... have you ever considered a GI problem being the cause of not absorbing the medicine properly? I had a hard time absorbing meds and was wondering why my levels weren't lowering despite the constant increases to my dose. Turns out, I had celiacs and because of the damage to the villi in my intestine I wasn't absorbing all the nutrients I was putting into my body, including my thyroid meds. I'm not saying that solved all my issues, but it helped. Worth looking into because hypothyroidism and Celiac's Disease definitely have a connection. Also, have you tried t3? Liothyroinine gave me back my life.

-Just some suggestions from someone who's been there. Hope your feeling better!

[Anonymous]

Anonymous wrote:

Anonymous wrote:If only it was that simple, I was diagnosed 14 years ago and they have never been able to get it within normal range. Endocrinologist had me at 725mcg daily and it would not come down. Tsh 563.. imagine the hell i was living. Come to find out my body was not absorbing it. I tried chewing it, letting it desolve under my tongue, you name it I tried it. Now I take 200mcg IM injection daily, that means i take 4 shots daily. Not to mention that I have a hard time getting the supply that I need from the pharmacy and a few thousand dollars a month. Current tsh over 100 and been taking the shots for over 8 months.
I have to laugh when people complain that their tsh is at 100 or below. I live with sever body pains daily and would give anything to have a normal level.
Signed miserable in Nebraska

WOW!! I'm so sorry you have to endure that... I can't even imagine mine being that high. I know how horrible it is to be out of range (below 100)... I don't know if this will help but I'm sure you feel as desperate as I was... have you ever considered a GI problem being the cause of not absorbing the medicine properly? I had a hard time absorbing meds and was wondering why my levels weren't lowering despite the constant increases to my dose. Turns out, I had celiacs and because of the damage to the villi in my intestine I wasn't absorbing all the nutrients I was putting into my body, including my thyroid meds. I'm not saying that solved all my issues, but it helped. Worth looking into because hypothyroidism and Celiac's Disease definitely have a connection. Also, have you tried t3? Liothyroinine gave me back my life.

-Just some suggestions from someone who's been there. Hope your feeling better!

I have had the testing and scopes done, it is not celiac Disease. TSH is currently at 84 since starting Injections.

I have

[Anonymous]

wow...I thought I was the only one. Had thyroid removed in 98 due to thyca and went on synthroid, a few years ago got the call that my TSH was 216 and doc said the only person she ever treated at that level was in a coma. I had high blood pressure but otherwise felt fine. Well not fine but the new normal of feeling like crap all the time.

I was put on armor then it went into the shortage...gawd on that I felt like I was the dust under the carpet. I am now on levothyroxin and got my numbers down to the 80s. I am very interested in getting on a t3 as well.

[Anonymous]

You might want to research the use of sea vegetables in treatment of thyroid issues. Worked for me!

[Anonymous]

I recently did my TSH test, and my doctor called and asked to come immediately to state that my TSH is 378. And it seems she never saw such high level and wanted to perform the test again for confirmation. And after that, she called me to confirm that its true that I m a super hypo thyroid !! Shel prescribed for 50mcg sythroid and asked for USS after 2 months. I am really worried now as I saw in this forum that highest is 200. But I was not feeling tired or anything; it was a routine check up and got this as a shocker. Anyone please suggest, if I have to be panic and go to some other doctor immediately??

[Anonymous]

Anonymous wrote:I recently did my TSH test, and my doctor called and asked to come immediately to state that my TSH is 378. And it seems she never saw such high level and wanted to perform the test again for confirmation. And after that, she called me to confirm that its true that I m a super hypo thyroid !! Shel prescribed for 50mcg sythroid and asked for USS after 2 months. I am really worried now as I saw in this forum that highest is 200. But I was not feeling tired or anything; it was a routine check up and got this as a shocker. Anyone please suggest, if I have to be panic and go to some other doctor immediately??

Yeah you need to go to another doctor. See an endocrinologist. She probably should have started you at a higher dose of Snythroid off the bat with much more frequent testing.

[Anonymous]

My doctor just called me today and said my level tested at 225.... I am miserable

[Anonymous]

Anonymous wrote:I recently did my TSH test, and my doctor called and asked to come immediately to state that my TSH is 378. And it seems she never saw such high level and wanted to perform the test again for confirmation. And after that, she called me to confirm that its true that I m a super hypo thyroid !! Shel prescribed for 50mcg sythroid and asked for USS after 2 months. I am really worried now as I saw in this forum that highest is 200. But I was not feeling tired or anything; it was a routine check up and got this as a shocker. Anyone please suggest, if I have to be panic and go to some other doctor immediately??

I'd go to another doctor. 50 mcg is not going to be nearly enough meds. Make an appointment with an endocrinologist ASAP.

[Anonymous]

I take Armour thyroid I feel like my old self, it is more natural, I was depressed on synthroid.

[Anonymous]

Anonymous wrote: And after that, she called me to confirm that its true that I m a super hypo thyroid !!

Can I interject and add that I absolutely love the terms Drs use to describe different levels of Hypothyroidism?

at 153 she described me as "extremely Hypo"
at 121 she described me as "very, very Hypo"

She does the same thing when referring to my TSH and FT3 and FT4 levels: "really really bad" "very bad" and with the FT4 which is barely in range: "bad".

IDK, I've always found it a bit funny =D

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If only it was that simple, I was diagnosed 14 years ago and they have never been able to get it within normal range. Endocrinologist had me at 725mcg daily and it would not come down. Tsh 563.. imagine the hell i was living. Come to find out my body was not absorbing it. I tried chewing it, letting it desolve under my tongue, you name it I tried it. Now I take 200mcg IM injection daily, that means i take 4 shots daily. Not to mention that I have a hard time getting the supply that I need from the pharmacy and a few thousand dollars a month. Current tsh over 100 and been taking the shots for over 8 months.
I have to laugh when people complain that their tsh is at 100 or below. I live with sever body pains daily and would give anything to have a normal level.
Signed miserable in Nebraska

WOW!! I'm so sorry you have to endure that... I can't even imagine mine being that high. I know how horrible it is to be out of range (below 100)... I don't know if this will help but I'm sure you feel as desperate as I was... have you ever considered a GI problem being the cause of not absorbing the medicine properly? I had a hard time absorbing meds and was wondering why my levels weren't lowering despite the constant increases to my dose. Turns out, I had celiacs and because of the damage to the villi in my intestine I wasn't absorbing all the nutrients I was putting into my body, including my thyroid meds. I'm not saying that solved all my issues, but it helped. Worth looking into because hypothyroidism and Celiac's Disease definitely have a connection. Also, have you tried t3? Liothyroinine gave me back my life.

-Just some suggestions from someone who's been there. Hope your feeling better!

I have had the testing and scopes done, it is not celiac Disease. TSH is currently at 84 since starting Injections.

Update, I started Tirosint 200 MCG daily and my THS is down to 128. and maintaining. Still very miserable, but it is better than 563. Would recommend this drug to anyone not having luck with any other thyroid meds. Thanks Miserable in Nebraska

[Anonymous]

Even though I am up a little bit from injections, at least I do not have to do them as a last alternative unless it goes above 150

[Anonymous]

I don't know how you all are living like this. I don't have a thyroid (had it removed due to thyroid cancer last year) and I'm on 100 mcg synthroid. I can tell when my TSH is just .1 too high because in FREEZING.