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

[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

Update: I have been off the injections for a year now thanks to Tirosint (the only thyroid drug that is a liquid in a gel cap) Level has maintained at around 110. Still experience anxiety, lightheadedness, weakness, extreme fatigue and heart palpitations. These have not improved at all. So those of you that have problems with the absorption of thyroid medication, I recommend that you try Tirosint.
Signed Miserable in Nebraska

Do you have weight loss? Skin bronzing?

[Anonymous]

I just got a call from my doctor that my annual checkup showed TSH of 101 ... and I didn't know anything was wrong. She's re-running the bloodwork but wants to put me on Synthroid this week and then send me to an endocrinologist. I've never had thyroid problems before and nobody in my family has either. WTH???

[Anonymous]

Mine is 997.6 right now. I was off my synthroid for about 2 months. Was feeling absolutely horrible. Went to the Dr and they took my blood for testing. Office called the next day and said my results were so high they wanted me to go to the hospital and get it retested. I did. My Dr called after the weekend and said she wanted to see me. At that point I started to get impatient b/c I new what was wro g and I just wanted my synthroid so I could get better. I go in to see her and she comes in the room and says wow! Ism how your even responsive. I've tested and retested your thyroid levels and it's all showed up the same. She said she's talked to 6 other Dr's and non of them have heard of a level that high. So obviously I asked, what is it... She say 997.6

[Anonymous]

Level is at 557. I'm in hell

[Anonymous]

^^how do you (2 pp's) have the energy to even type this? How are you not in a coma?

[Anonymous]

My TSH was 147 when it was found. My doctor looked at me like I was a ghost and told me I should've been in a coma. It's been 10 years and I now take 300 mcg of levothyroxine and my TSH is still on the upper end of normal.

[Anonymous]

I recently had blood work done on 2/22/16 and everything was normal. however I went in because i was having this strange fullness in my throat and it hurt to swallow when i ate and I was physically sick fatigued achey and could not figure out what it was. The docs are like you probably have an infection here some antibiotics and sent me on my way..Well that went away and life went on. (this is another reason i dont like just taking meds because no one really looked into anything they just said oh must be this here are some pills)

on 4/22/16 i went in for bloodwork and my TSH was 86.4...i have zero symptoms, i feel excellent. My doc was so alarmed, of course his first mention is meds, i told him look life long meds for me is a last resort not a first. I want to know why I want more testing, a specialist and them more testing. What if I had an infection on 2/22 that gave me a something subacute that will rebound and your trying to make me a pharmaceutical slave for life, and it's not even going to cure it, all of this was possible when you look at what i was feeling two months ago and my doc agreed, especially since i could pinpoint it I knew something was not right in my throat and then bam! two months later my thyroid is malfunctioning. i told him the body is self healing, not everything requires a jump into medication and no one should take lifelong medication lightly.

4/25/16 we retested my TSH and we tested my Free T3 and T4 and those are both low and my TSH in just a few days went up to 104. again no symptoms.

I am now waiting on testing to see if I am producing antibodies against my thyroid.

i realize for some people they just want treatment for their symptoms, but i want healing, I am a strong believer in self healing. i dont claim to know why my thyroid is acting up or even what will fix it, but neither do the doctors so I say if you dont have symptoms try some holistic things that can help you heal yourself first, give you body time to and the nutrients it needs to work right and repair, our bodies are amazing at healing itself and make a dive into life long medication or surgery (which can only lead to other complication down the road) a last resort.

at this point I feel absolutely fine so I will not be taking anything, but I will continue to test, monitor and evaluate with different docs the results they find.

[Anonymous]

Was diagnosed with hypothyroidism when my test results came back with a TSH of 656. My Dr told me it was the highest he had ever seen. I told him I was planning on working out at the YMCA that evening but he was makeing me question if I should. He told me if I could make it there I should go. I did. After a good three months of meds I have my TSH down to 8.5. I eat well, juice vegetables and stay away from fast foods, processed foods and sodas. That and being stubborn I feel is the reason my TSH was so high. Lessons, no matter how well you treat yourself, don't ignore yourself.

[Anonymous]

My tsh is 198.500 and im nearly paralysed from it.cant think good.heart and kidney problems from it.muscle cramps bad.fatigue.etc.

[Anonymous]

Anonymous wrote:My tsh is 198.500 and im nearly paralysed from it.cant think good.heart and kidney problems from it.muscle cramps bad.fatigue.etc.

im 28 years old.on 100mcg for now.very painful experience from head to toe

[Anonymous]

I routinely have TSH levels between 180-240 when I go off the levothyroxin for whatever reasons (insurance, moving abroad, etc). I find that my energy levels take a slight ding and I gain some pounds, but I am otherwise generally not affected. I know this is a bit of an anamoly, as there are others that are deeply effected by even a slight change. That said, I am trying to be more regular about taking the meds. Like right now I am a 200. Once I'm on them, I'll drop back into the 'safe range' of 4 or so after a few months.

In short, take care of the issue, but I think you shouldn't fret unduly about the number itself.

[Anonymous]

Anonymous wrote:I just got labs drawn (7 mos Postpartum) and my TSH was 116. I've already seen an Endocrinologist and have started Synthroid but she made a big deal about how high my TSH was. I've talked to multiple people that have hypothyroid (Hashimotos) and the highest TSH I've heard is in the 50 range.

Is there anyone out there who has had a TSH over 100?

... I'm actually becoming a little worried that I've been walking around with such a high TSH for god knows how long.

[Anonymous]

My TSh levels rose to 165.08 in february of 2013.

[Anonymous]

Anonymous wrote:My TSh levels rose to 165.08 in February of 2013.

Always have thyroid peroxidase levels monitored. if high medication will not absorb properly. have iron levels checked to see if you are anemic, and have cholesterol levels monitored,

[Anonymous]

Anonymous wrote:

Anonymous wrote:My TSh levels rose to 165.08 in February of 2013.

Always have thyroid peroxidase levels monitored. if high medication will not absorb properly. have iron levels checked to see if you are anemic, and have cholesterol levels monitored,

I developed hashimoto disease as well, in 2000 .