TSH readings

[sobs1962]

I recently read a post on Facebook regarding someone's thyroid condition and they said their TSH was 144. Is it possible that they wouldn't feel completely wiped out with a TSH that high and they said that their doctor started them on 25mcg dose. I was shocked and put in my opinion and also my opinion regarding doctors knowledge of thyroid disease based on the knowledge I have picked up on here,but everyone seems to have great faith in their doctors and quite frankly I feel sorry for them as they'll never get better at that rate.

[helvella Administrator Thyroid UK]

There are many possible reasons it could be so high including test interference. (And a mistake - missed decimal point in the post? So 14.4.)

However, we have seen a number of members post that they had very, very high TSH levels yet functioned better than you might expect.

[Lotika]

It’s weird, isn’t it? I mean we might think that someone with a TSH of 71 would feel worse than someone with a TSH of 7 because it sounds logical, but I am not convinced about how true it is in practice. I got diagnosed with a TSH of 28, which I think is quite impressive. The husband looked like death with a TSH of 7 and was really struggling and looking for help from doctors. Given that he was diagnosed 5 years after me, it’s hard to be sure who was worse because the memory plays tricks. I definitely had a lot of hypo symptoms and vit d deficiency. I’d been to the doctor and was prescribed antidepressants which I didn’t take two years before diagnosis, so I obviously remember that I felt “wrong” but I ascribed it to grief and then over the course of a couple of years, got used to feeling that rough and it became “normal” for me. But who felt worse? I think maybe him!

He is going through that medication trough, whilst he finds the right dose, which I remember as being worse than a TSH of 28. I suspect we have another poor converter on our hands, but that is a worry for another day!

[humanbean in reply to Lotika]

It’s weird, isn’t it? I mean we might think that someone with a TSH of 71 would feel worse than someone with a TSH of 7 because it sounds logical, but I am not convinced about how true it is in practice

I think that relying solely on TSH to indicate how mild or severe hypothyroidism is is playing the game the NHS plays.

TSH isn't a thyroid hormone, it is produced by the pituitary. The thing that makes the biggest difference to anyone with thyroid disease is levels of Free T3 and Free T4. And the ratio between the two probably has an effect on feelings of well-being too. Some people cope with zero T4 as long as they have good levels of T3. Others would not be able to function with low levels of T4, no matter how close to their own optimal their T3 level is.

Another factor is how good someone's levels of nutrients are. If they are low in range then they could add dramatically to someone's feelings of ill health.

It also depends on how fast the deterioration in thyroid health was. The longer it goes on before sufficient treatment is begun the worse people are likely to feel. Suppose you have two people with a TSH of 30. Person A developed their problem over 10 years, and person B developed their problem over 10 months. Patient A is likely to feel a lot sicker than Patient B.

And another issue is levels of cortisol. The body will often over-produce cortisol in the early months and years of thyroid hormones getting lower and lower. Eventually the over-production might not be maintainable any longer and levels of cortisol might drop through the floor. Both high and low levels of cortisol cause many unpleasant symptoms.

But, as we all know, the only thing that matters to doctors is TSH and the complexities and realities of thyroid disease are disbelieved and usually considered irrelevant.

[Louise9683]

Hi Sobs1962

My recent TSH was over 100, basically because I stopped taking Levo because I was sick and tired of being sick and tired. (of course I would not recommend this to any one) I have no hypo or hyper symptoms.

I am currently seeing a private endo to try and bring my TSH back into range while staying asymptotic

[Jtaylorhoo in reply to Louise9683]

Hello! Just read your post with interest as I have been having the same symptoms. My TSH has suddenly shot up to over 40 for no reason. I also take T3 alone and see a private endo.May I ask how is your endo is attempting to bring your TSH back under control? I am reluctant to return to levothyroxine.

[Louise9683 in reply to Jtaylorhoo]

Good morning

My endo has put me on ERFA NDT

He’s put me on small amounts so I stay without symptoms.

First 6 weeks I was on 1/4 grain and my bloods went from >100 to 64

I’m now on 1/2 grain for 6 months, I am 3 months in and still feeling well.

It costs about £40 a month on private prescription.. and it makes me so mad that the NHS do not prescribe a natural drug that would help so many sufferers!

I will never go back on Levothyroxine

[sobs1962 in reply to Jtaylorhoo]

Thanks for reply, the last blood tests,I had done show my TSH as suppressed 0.01 on a range of 0.35- 5.50 and they're threatening to reduce my levo which will inevitably make me feel much worse again. Was on 150mcg of levo until June 2019 and as my TSH was below range but not suppressed they cut my dose to 125mcg and then last year,I tried coming off propranolol too quickly and they interpreted that as hyperthyroidism and stopped me taking it completely and put me back on 25mcg, so I stopped taking it as 25mcg is far to small a dose to do anything at all. My TSH rose to 96 back in August and they agreed to me taking 50mcg, but needed increased up to 100mcg but still having hypo symptoms do if dose is reduced again, I've pretty much had it. They won't test FT3 either so CANNOT diagnose thyrotoxicosis without that test. The NHS is going down the drain rapidly.

[jrbarnes]

I'd be in a wheelchair and on disability benefits diagnosed with fibromyalgia if I didn't kick my GP to the curb and find a better one. I accomplished more in my life not knowing that I had hypothyroidism and before I went on Levothyroxine.

[irec]

When I was first diagnosed with hypothyroidism it was because I visited my GP as I thought I had post natal depression. Thankfully my GP had known me all my life (a friend's mother) and knew I was off so said she'd run full bloods. I knew nothing about hypothyroidism and so when they phoned the next day saying I had to go in immediately I didn't realise that my results (TSH 151 and T4 at 0) were seriously out of whack. The Dr I saw the next day did ask how I was still standing and I said I had felt wiped out and too weak even to life my son to nurse him but I felt more depressed than anything. I started my levo dosage then and there and remember feeling so bad I just wanted to take the full dose but had to keep adding 25mg doses for weeks. It was a horrible time. But yes, people can have extremely out of whack thyroid function and attribute it to something else as I had done being a new mum.