Took T4 for 15 years, stopped hypothyroidism treatment and feel better than ever.

[CarmelBrazil2]

Hi,

Age 19 I showed very elevated TSH levels, was diagnosed as hypothyroid and given T4 for 15 years. Felt totally crap.

I stopped 18 months ago and feel absolutely great, much better than on T4.

I do not know if I was misdiagnosed, if I recovered from hypothyroidism, or if I still have a deficiency but that levothyroxine is simply so crap a drug that I feel better without it than with even if there is still something wrong.

Any advice?

The longer story:

Original diagnosis: I was never overweight, never had hair loss, muscle cramps etc.

The reason they tested me is that my blood pressure crashed a couple of times and I couldn't wake up properly sometimes.

After starting to take T4 I developed severe generalised anxiety disorder, severe social phobia and depression, which I had for 10 years. A lot of fatigue and severe mental health problems, was hospitalised once.

I was always, must add, crap at taking my pills and also wasn't told to take it in the morning instead of in the evening. Basically, during all of this time I felt really terrible. A lot of fatigue.

During this time my TSH was sometimes high and dose adjusted and TSH normalised.

When seeing my endocrinologist(s) or GPs it was always a total given that because I'd tested high originally and occasionally since (when on T4) I must be hypothyroid and would be forever. I never found a doctor who could explain to me my exactly I needed to be on T4 if my T4 or T3 were never, not once, low, and only my TSH was high. The issue was basically not up for discussion.

I got annoyed at a situation that and during one holiday I decided to see what happened if I just stopped taking my levothyroxine. There were no physical symptoms to give me any reason whatsoever to go back on it. That was 18 months ago. I feel better than ever. I feel fatigued at the end of the day and tend to have an hour nap (!) but that's probably because I'm a mum of 2 toddlers and am now general director of a company employing 161 people and have a lovely understanding husband who supports my nap time.

I still in all this time haven't been back to a doctor as even if my TSH is high I don't want to be put back into their funny little box-like thinking, back onto meds and feeling crap again! I will go and do the test again, seems sensible, but I'd first like some kind of info on if this has happened to other people.

So, the only reference I've found to total misdiagnosis of this kind is on this is on the stopthethyroidmadness website, where it says "Some never needed treatment in the first place. i.e. the doc just once caught a higher TSH due to stress or anything else, and onto T4 they went. We discovered this scenario when these folks simply stopped taking their T4-only and have been fine since!! i.e. what caused the high TSH at one time has gone away."

Anyone have experience, information or any pointers about how to find out more about cases where elevated TSH levels were used to misdiagnose hypothyroidism in patients who were simply not sick? Do people ever recover from hypothyroidism, is this what could've happened, alternatively?

Many thanks, any help or advice much appreciated.

[greygoose]

Hi carmel, you know, with thyroid, anything is possible. Were you diagnosed after just one single high result for TSH? They didn't say come back and test again in 3 months? Did they only do the TSH? Did they test antibodies? You could have Hashis, which would explain a lot. Do you have those results?

You know, it's going to be pretty difficult for anyone to hazard a guess without any labs to go by, so, if you have any, please post them. If not, ask your doctor for your records, it's your legal right to have them.

It's quite normal to feel better for a while after stopping thyroid hormone replacement. But it doesn't last forever if you're truly hypo. I was on T3 only, and stopped. I felt good for 6 months, and l have virtually no thyroid, but then the hair started to fall out, and the weight packed on. And my TSH had gone from zero to 35. So, you really do need to get tested, to see where you are.

[CarmelBrazil2 in reply to greygoose]

Hi, thanks, this is really helpful, and very interesting that you felt good for that amount of time even with virtually no thyroid. OK, it's been 18 months now without T4, but I never would've expected someone with practically no thyroid to go 6 months, so had better not discount that idea.

My antibodies were never tested, and elevated TSH was the only indicator, ever. I didn't even have many of the symptoms apart from fatigue and anxiety.

I will look into Hashimoto's, in case I've just recovered, and get retested, certainly, in case I'm still hypothyroid. Thanks for this

[greygoose in reply to CarmelBrazil2]

The only symptom I had at the time l was diagnosed was weight gain - although l had had other symptoms throughout my life without realisong what they were. My TSH was only 11, but my frees very low, and my antibodies sky high. We're all different and, unfortunately, totally dependant on the goodwill and knowledge of the doctor that does the tests.

If you do ask for antibody tests, make sure you get both, because they tend to only do one for some reason, TPOab and TgAB.

You don't recover from Hashis, you just have moments of remission that can last from days to years. But, with time, you get more and more hypo as the antibodies destroy more and more of the gland.

But it is perfectly possoble that synthetic T4 just didn't suit you, it didn't suit me. Hashis peopl often have trouble converting. NDT didn't suit me, either, gave me all sorts of horrible symptoms. I'm best on T3 only. We're all different!

[Clutter]

Welcome to the forum, Carmel Brazil2.

TSH rises when low circulating FT4 and FT3 is detected so although T4 and T3 were within range, they probably weren't optimal. If TSH tested high and, was subsequently high when you were on Levothyroxine, it wasn't a one-off stress induced thing or misdiagnosis.

Subacute thyroiditis is self resolving after a couple of years but usually presents with pain and fever and hyper levels initially before becoming hypothyroid. It doesn't sound from your description that you had this.

It would be sensible to have annual thyroid function tests to check levels. If you do need thyroid replacement you might try Levothyroxine + T3, T3 only or NDT. I couldn't tolerate Levothyroxine only and felt better without it for a few weeks although I have no thyroid, but I'm fine on T4+T3.

Fatigue is a hypothyroid symptom but may also be due to low ferritin/iron, low vitamin D, low B12 and folate. It may be worth asking for them to be tested.

[Clutter]

Welcome to the forum, Carmel Brazil2.

TSH rises when low circulating FT4 and FT3 is detected so although T4 and T3 were within range, they probably weren't optimal. If TSH tested high and, was subsequently high when you were on Levothyroxine, it wasn't a one-off stress induced thing or misdiagnosis.

Subacute thyroiditis is self resolving after a couple of years but usually presents with pain and fever and hyper levels initially before becoming hypothyroid. It doesn't sound from your description that you had this.

It would be sensible to have annual thyroid function tests to check levels. If you do need thyroid replacement you might try Levothyroxine + T3, T3 only or NDT. I couldn't tolerate Levothyroxine only and felt better without it for a few weeks although I have no thyroid, but I'm fine on T4+T3.

Fatigue is a hypothyroid symptom but may also be due to low ferritin/iron, low vitamin D, low B12 and folate. It may be worth asking for them to be tested.