Extreme fatigue : Hi all, Iv been diagnosed hypo... - Thyroid UK

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Extreme fatigue

charliewalker0705
charliewalker0705

Hi all,

Iv been diagnosed hypo Hashimotos since 2009. I have managed it pretty well since then, but seem to be going through a bad patch.

I have always felt at my best when my TSH is right down at around 0.05 and my T4 at the edge of upper level around 19.

Had the usual tiredness symptoms and feeling generally low in January and my tsh came back at 1.02 and my T4 at 18, the doctor wasn’t prepared to up my Levo. Just got new bloods back today and my TSH is at 5.37 and my T4 at 12.5.

I haven’t felt this exhausted since I was diagnosed, it’s constant. Iv got back pain, my hair is falling out, the brain fog is unreal, Iv got heart palpitations, the carpel tunnel keeps me awake and all I want to do is sleep. I’m freezing cold and we’re in the middle of a heat wave!

I feel like my doctor will say there’s nothing wrong and I need to get on with it, am I being dramatic saying that my TSH is too high? And T4 too low? Has anyone else been this symptomatic around these levels? Many thanks x

5 Replies
oldestnewest

No, you're not being dramatic. Your TSH is much too high. Should be 1 or under. Your FT4 isn't low, I don't think, but difficult to say without the range. But I imagine what is happening is that you aren't converting very well, and your FT3 is low. So, it's difficult to say anything without seeing and FT3 test.

Thank you, it’s just nice to hear that you’re not going crazy! I can’t seem to upload a picture of my results, but the range according to that for free T4 is 9-19. I feel like I physically can’t work I’m just so exhausted and the doctor is saying that I shouldn’t feel like that just because of my thyroid and those results

shaws
shawsAdministrator
in reply to charliewalker0705

Your doctor is another idiot. There's no other word as they have NEVER experienced any of the awful symptoms we can get. Most on this forum have returned to good health by ignoring what the BTA and others state. If those who are on levo are fine and dandy they wont be on the internet and many seem to do well on it but many are also in continuing ill-health because TSH is in range - be it the top or not.

shaws
shawsAdministrator

You are right and doctor will be wrong as they know no clinical symptoms at all. This is a list and he/she had no right reducing your dose according to your TSH. The lower the TSH is when we take thyroid hormone replacements, is really immaterial if we feel well. Considering that those who have had cancer of the thyroid gland, have to have a suppressed TSH. They should stop messing about with the dose.

thyroiduk.org.uk/tuk/about_...

Do you have the earliest possible appointment, fasting (you can drink water) and allow a gap of 24 hours between dose and test and take afterwards? If not your results will be skewed and adjustments made by doctor to 'fit' you into a range for your TSH..

They really know nothing at all except to look at the TSH and T4 and pronounce what they've been told to do never mind that the patient has a return of crippling symptoms.

thyroiduk.org.uk/tuk/about_...

SlowDragon
SlowDragonAdministrator

Have you had change in brand of Levothyroxine? Or any new medication or diet or other changes?

Essential to test vitamin D, folate, ferritin and B12, often too low, especially when been under medicated.

You will need 25mcg dose increase in Levo and retesting in 6-8 weeks, including FT3

Your GP is wrong, on Levothyroxine we need TSH under 2 and very many need it under one or suppressed before FT3 is high enough

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine (Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies? If never had TPO and TG thyroid antibodies tested ask GP to do so

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