Hi, I am hypothyroid and have been taking levothyroxine for about 8 years. Until recently, I have been fine with it and not suffered from fatigue. I take 150mg daily and have done for some time. However, looking back at my blood test results, I have noticed that my TSH levels are rather low and have been for about 6 years. It seems to range between 0.06 and 0.11 I have read that it means I am having too much levo and that it can be harmful in the long term. Can anyone advise me please?
I say that the fatigue has not been present until recently, because I have been suffering increasingly with it since last autumn. However, that follows having covid in September (so my GP says it is long covid) and I may also have a B12 deficiency. This is why I don't believe my current fatigue is related to my thyroid. My GP wants to decrease my levo by 25mg and I am inclined to agree but would appreciate any thoughts from those more experienced here.
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CrochetDimples
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A TSH reading on its own will not tell you if you're over-medicated. You need to test FT4 and FT3 to find that out, and you are only over-medicated if your FT3 is over-range.
That said, you might be a poor converter, in which case your FT4 could be too high without you being over-medicated as such - if that makes any sense. Having your FT4 too high is not a good thing at all, but not sure it leads to fatigue. Having low FT3 would cause that.
So, all in all, never ever allow a reduction in dose without seeing your FT4/3 levels because TSH levels can be deceptive. Once below 1, the TSH is an unreliable indicator of thyroid status, and should not be used to dose by (the inventor of the test said that himself!).
Until you've checked out your thyroid levels to make sure they are optimal and that needs FT4 and FT3 results, not just TSH, and addressed any B12 deficiency I would be wary of a Long Covid diagnosis.
Doctors have a tendency to blame things like fatigue and feeling very below par on conditions that they then dont have to treat. There are currently no cures for LC and although NHS clinics have been set up since the pandemic, provision is patchy and waiting lists are long.
Long Covid is a truly horrible condition and its been life changing for many unfortunate folk who've contracted it, but your GP should first rule out any obvious and treatable problems like thyroid and B12 deficiency, before palming you off with LC.
I have suffered B12 deficiency for most of my life and am on injections every 2 months. B12 deficiency, as well as low ferritin can make you feel like you are on your knees.
Above response is spot on, and I’d like to put a finer point on it… once on Levo, your TSH will be suppressed. That is a sign the Levo is working. Many (if not all?!) will show TSH at 1 or close to zero like you as your pituitary (that makes the TSH) knows that it doesn’t need send out a signal for more thyroid hormone.
It is quite unbelievable but true that doctors all over the world do not know this, and continue to assess and treat only on TSH. It is categorically the wrong thing to do. It has an equal chance of making you feel worse than better.
To get to the bottom of the role your thyroid plays in your fatigue begins with getting TSH, free T4, free T3 tested together, with last dose Levo 24 hours before, test as close to 9 am as possible, and nothing but water that morning.
You may need a dose change, it may be your thyroid, or it might be something totally different.
But do not reduce your thyroid hormone dose without seeing your free Ts.
Let us know how it goes. There are people like you posting about exactly the same situation regularly on this board and you can get great advice every step of the way.
Thank you everyone. My last T4 was 26.1 pmol/L, which is above the range limit of 22 but I don't think I've ever had T3 tested. Is that usual in the UK?
Yes a lot of NHS areas in the UK dont routinely test FT3, even if doctors request it, the Labs will often decline to test it if TSH and or FT4 are in range. Its why so many members have to buy private tests. Its far from ideal 😒
Thank you everyone. My last T4 was 26.1 pmol/L, which is about the range limit of 22
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests
Is your hypothyroidism autoimmune
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
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