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

Anonymous
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
Yes, at one point mine was something in the 200s. I was exhausted all the time and had NO energy to do any.thing. When I finally had the bloodwork the nurse called to tell me I should be in a coma! So I went on the generic for Synthroid and have over the last six years managed to get my levels back to the normal range. I am on a high dosage of "synthroid" though, 225 micrograms. I had Hashimotos and had my thyroid removed in 1999. Should have done it sooner but I was reluctant to put myself in the position of having to take a pill the rest of my life. lol. Silly me.
Anonymous
Anonymous wrote:Yes, at one point mine was something in the 200s. I was exhausted all the time and had NO energy to do any.thing. When I finally had the bloodwork the nurse called to tell me I should be in a coma! So I went on the generic for Synthroid and have over the last six years managed to get my levels back to the normal range. I am on a high dosage of "synthroid" though, 225 micrograms. I had Hashimotos and had my thyroid removed in 1999. Should have done it sooner but I was reluctant to put myself in the position of having to take a pill the rest of my life. lol. Silly me.


Hum, you did not get Synthroid for 5 years after a thyroid removal???

My dear PP, you shouldn't be in a coma, you should be dead! Thank your lucky stars you're still around.
Anonymous
Anonymous wrote:
Anonymous wrote:Yes, at one point mine was something in the 200s. I was exhausted all the time and had NO energy to do any.thing. When I finally had the bloodwork the nurse called to tell me I should be in a coma! So I went on the generic for Synthroid and have over the last six years managed to get my levels back to the normal range. I am on a high dosage of "synthroid" though, 225 micrograms. I had Hashimotos and had my thyroid removed in 1999. Should have done it sooner but I was reluctant to put myself in the position of having to take a pill the rest of my life. lol. Silly me.


Hum, you did not get Synthroid for 5 years after a thyroid removal???

My dear PP, you shouldn't be in a coma, you should be dead! Thank your lucky stars you're still around.




7:59 here. To clarify, I was on medication but was not managing it due to not working and not having health coverage so I got lazy and didn't follow through like I should have. Once I finally got a job and health care my Endo made me go in every month for bloodwork for what seemed like three years but it may not have been that long. Point being to OP -- yes, your numbers are high and yes you need to get it checked out and yes, it's a big deal.

Anonymous
OP here - wow! 200! You must have felt miserable!
I just started meds on Monday and I'm looking for relief. I feel so run down and I want to feel better soon.
Anonymous
The connection between TSH and symptoms is such a mystery. A friend of mine had a TSH of 144 and almost no symptoms other than fatigue. My body and brain fell apart with a TSH of 8. Also I have found since starting synthroid (3 yrs ago) for me that there is no correlation between my TSH and my symptoms. I can feel great or horrible at a TSH of 6 and great or horrible at a TSH of 1. Other people seem to have symptoms more matched to rising/falling TSH but not me and many others! It makes it a huge pain to stabilize - the joys of autoimmunity.

OP - hopefully the meds will bring that TSH down soon. You should get an ultrasound of your thyroid if you haven't yet to see what shape it is in.
Anonymous
My TSH was run up to 163 and then 143 during my thyroid cancer treatment. It was absolutely unbearable. That was over a decade ago and I do believe that I have never been the same since -- I have hard swelling in my legs and remain disoriented much of the time.
Anonymous
so you just had your thyroid out because you had hashimotos? no lumps or anything?
Anonymous
The normal range for TSH is a low of .3-.5 (depending on the doctor, the latest study, etc) and a high of 3.0-5.5 (again, depending on who you ask. But, I basically say "normal" is .3-5.5. My TSH from the last few blood tests ranges from 17.46 - 114.43 and I hardly ever show symptoms.

I even went for a few years without taking Synthroid because I didn't feel any symptoms, EVER. I have been prescribed Synthroid (or some generic form) for the past 14 years and just recently started feeing minor symptoms if I don't take it. A couple years back I stopped taking it because I was sick of going in for blood tests every 6-12 months and I was sick of paying for my rx every month and driving to the pharmacy... it was just kinda inconvenient for me, especially because I have never felt the NEED to take it, the docs just said I had to.

Well, now that I'm 30 years old, I start getting REALLY REALLY tired if I don't take it. I ran out just last month and the pharmacy wouldn't give me a new prescription until I saw a doctor. I told them I had a new doctor but they couldn't see me for another 6 weeks. They said I had to get a new rx before they could give me more Synthroid. My old doc wouldn't give me a prescription because it had been over a year since my last blood test, my new doc wouldn't give me a prescription because I hadn't been seen yet, and so I went a few weeks with nothing. I was only off the meds for about 2 weeks and my TSH levels got up to 114 earlier this week. I was SUPER tired, but other than that felt fine.

I hate the fact that I have to take a pill every day of my life for the rest of my life. ...but it could be worse! So, I guess I'm thankful.
Anonymous
I had my thyroid removed in Dec. any my TSH was 28 in Jan. and when I went back for labs 2 weeks ago, the dr called me to see if I had been taking my synthroid because my TSH was 100, when I replied like clock work every morning at 6:30, she said something was wrong because my body was no longer absorbing the medicine, so we talked a while and I told her that they pharmacy had been giving me the generic form of synthroid, so she called in a new prescription at higher dose of 175mg's and marked it non generic, so now after two weeks of this I still feel very tired and not sleeping well at all, she said she wanted to try this for 4 weeks and if my numbers didn't come down she would have to give me a T3 boost. I'm really worried about this not getting under control and causing serious problems, and the worst of it is that my husband doesn't understand how being hypothryroid has literally change everything about me and the way I used to feel and he thinks that it's really not serious at all.
Anonymous
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
Anonymous
What is your ft4?
Anonymous
It's been a long struggle for me. Things have started to improve only by following this Dr: www.hopeforhashimotos.com. Synthroid is usually not the answer! Hopefully some of what he says will be helpful for some of you as well.
Anonymous
Anonymous wrote:What is your ft4?
free t4 is .094 , do you have an answer of why oral med does not work? I would love to hear it.
Anonymous
i have hashis and mine was 119 three months ago.

I started on brand synthroid 100mcg and cytomel for a boost for a week. I felt a lot better with the cytomel, missed it when it was gone.

I do feel better with the synthroid, but had some crazy symptoms while my tsh started dropping.

labs last week had tsh at 13. Endo didnt want to change anything, wants to give it more time to come down.

bah.. how would she like that approach if she couldn't think straight at work? i am looking for a new endo.
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