Had blood tests done yesterday after starting on 50mcg thyroxine about 6 weeks ago. GP said at the time I was subclinical & it was a “trial”. But I’m not sure that I am, and as I’m not feeling better, wonder if he’ll just stop the thyroxine.
Last test results he based that on:
TSH 3.78 (0.3 - 4.2) - so not over the range
FT4 11.3 (12 - 22) - so only just under.
I’m also very heavy right now, and mentioned the 1.6mcg / kilo, but he said that was only if I was clinically hypothyroid.
Tbh I’m worried if I say I’m no better he’ll stop the trial, rather than try an increase. I know I need to wait for blood results, but I might not get them until he calls me, so trying to get my head round it. He didn’t order vitamin tests & tbh I forgot to mention. But (as I’ve mentioned before) my WBC count was still high (mainly lymphocytes), and platelets, CRP gone higher (double max range), renal profile not good, etc. Tbh I’m worried about it all & I feel so shit. This has been since 31st Jan.
Is there an official guideline I can refer to for the levels of TSH & FT4 (& FT3) which he should be aiming for, as I know you guys have mentioned TSH under 2 & FT4 in upper 2/3 of range. But is that written anywhere I can refer him to? If that makes sense.
I’m sick of falling asleep just after I’ve got up. Struggling to find words. Hair falling out & breaking. Sore sometimes when swallowing / just achey at thyroid.
Any tips hugely appreciated.
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KayS68
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On levo your results should be better than those as you say with TSH down to 1 or below and FT4 well over half way through range.
What sometimes happens is that the thyroid has been struggling for a long time. when it senses hormones coming from elsewhere ie your starting dose of levo, it goes "Phew, I can take a rest now". So it cuts back and you are left no better or worse off than originally. This is the signal that you need an increase.
Your FT4 was just under range but the range is based on a wide spread of results. You might be one of the people who would have had their ft4 at 22. So you could be very low for you!
The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Your TSH is too high, your FT4 is below range, you need an increase in your dose of Levo, 25mcg now, retest in 6-8 weeks, repeat until your levels are where they need to be for you to feel well.
You can refer your GP to refer to NHS Leeds Teaching Hospitals who say
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .................. This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L ............ Likely under Replacement
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
I remember you referring to Central hypothyroidism - nothing was looked into with regards to that. I think because I got the nodules, they looked suspicious, then levels swapped over from thyrotoxicosis.
That’s the pituitary gland isn’t it? What do they test? I’m incidentally having a brain MRI On Fri - would that show any issues?
That’s the pituitary gland isn’t it? What do they test? I’m incidentally having a brain MRI On Fri - would that show any issues?
Pituitary or Hypothalamus. No idea what they test. Your MRI may show something, I really don't have any personal experience of Central Hypo to pass on I'm afraid.
Don't tell him you don't feel any better - why should you, anyway, on a starter dose? But, I don't suppose he understands that! No, tell him that you definitely feel an improvement, but think you might feel better still with an increase in dose.
FT4 11.3 (12 - 22) - so only just under.
This is a mistake so many doctors make. Because they don't understand ranges. A range of 12 to 22 doesn't mean that you are going to feel great anywhere in the range, so 11.3 is only going to make you feel a little bad. The point is that the ranges are too wide, so you're not going to feel the same at 12 as you would at 22. But, a euthyroid result would be about mid-range. So, if you take mid-range - 17 with this range - as THE point to be, then 11.3 is a lot under.
However, having said that, I have to say that mid-range probably wouldn't be right for you, because hypos need higher levels of thyroid hormone than euthyroid people. And you are hypo (not sub-clinical) with a TSH of over 3, no matter what the range. But, these are all things that doctors just don't understand.
Thank you so much - that’s good advice. I did think it might be better to say I feel a bit better.
This is what’s frustrating - doctors just don’t seem up to date with any of this info - despite hypothyroidism being a fairly common issue.
I keep checking online to see if my blood results are up, but nothing yet.
The point you make about my FT4 makes such a lot of sense. And it’s good to know that the TSH should be under 3. If I didn’t have you guys to ask, I’d just have to put up with this.
They just don't learn about thyroid in med school. In all their seven years, or whatever, they only have one afternoon on the whole of the endocrine system. So, you can imagine how little time is spent on the thyroid, which is only a small part of the whole. And, the thyroid is so complicated, but they are taught - literally - 'thyroid is easy to diagnose, easy to treat'. Well, I suppose it is, if you know nothing about it!
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