In January I asked for advice here on recent blood test results and my current levothyroxine dosage. healthunlocked.com/thyroidu...
I managed to get my GP to agree to a trial of an extra 25mcg supplement to my standard 100mcg and I’ve just seen my NHS blood test results (taken at 9am in week 7 on the higher dose) :
Serum TSH- 0.1 mu/L (0.3-4.2 range) flagged as abnormal
Serum free T4- 17.8 pmol/L (12-22 range)
My previous tests were in Oct and Nov. The GP test for TSH alone showed 1.6 mu/L while a wider Medichecks run down a month later gave 2.51 mu/L for TSH (0.27-4.2 range), free T4 of 12.9 (12-22 range) and T3 of 3.8 (range 3.1-6.8).
I need to speak to the GPs now to review the results/request a repeat script of the 25mcg.
Could I ask for your help working out where things stand? They’re going to say I’m over medicated, yes? Does not knowing my free T3 levels leave me in the dark here? Is it time for a private blood panel?
FYI, i’m into my 4th week of an elimination/gut healing diet following AIP guidelines (auto immune protocol). No dairy, grains, legumes, nightshades…. In a fortnight or so I can start with some slow reintroductions and hopefully reveal some issues. Anyone else doing/done this too?
Kind thanks to you all.
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ILala99
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Once the TSH gets below 1, it is no-longer a reliable indicator of the adequacy - or otherwise - of your dose. Simply because it cannot go lower than zero, and it can reach zero whilst thyroid hormone remain inadequate. Something doctors don't seem able to get their heads round.
The most important number is the FT3, it's true. But, even that number we can manage without if we have the FT4. The FT4 tells you how much T4 (levo) you have in your blood. That's all it tells you, but if your FT4 is low, then it's pretty cerain your FT3 is also going to be low - a lower percentage through the range than the FT4. But it can't tell you exactly how much lower. And, it cannot tell you how much thyroid hormone is getting into the cells, of course.
So, what can the TSH tell you? (Retorical question!) Well, it can tell you that the pituitary is satisfied with the amount of thyroid hormone in the blood - but doesn't tell you whether it is satisfied with the amount of T4 or T3. And, as TSH also stimulates conversion of T4 to T3, so if the TSH is low, odds are that your conversion isn't that good and that your FT3 is going to be low. Too low to get rid of your symptoms.
So, all in all, the idea that the TSH test tells doctors 'all they need to know' is totally ludicrous. It would be funny if it didn't have such serious consequences for the patient. But, quite how you convince them of that, I really don't know.
But, one point you should bear in mind is that doctors are there to advise you. Not dictate to you. Changes to your treatment should only be made with your informed consent. If you do not agree, and you inform your doctor that you understand and are prepared to accept responsibility for any consequences of a suppressed TSH, then they should respect your wishes and not reduce your dose. You are an intelligent adult, not a child, and should not accept the over-bearing paternalism of arrogant doctors with a god-complex. Just say no.
Thank you Greygoose. On the issue of conversion, my new elevated 17.8 T4 (vs 12.9 on 100mcg last November) may not mean an equally elevated T3, am I correct? But simply having the elevated T4 is an improvement- hence wanting to remain on the 125 dose?
Despite any losses on the conversion front?
Also, we’re talking about blood serum levels but am I right thinking a lot of the conversion happens at a cellular tissue level? That a blood test cannot give indication sof?
On the issue of conversion, my new elevated 17.8 T4 (vs 12.9 on 100mcg last November) may not mean an equally elevated T3, am I correct
You are indeed, yes.
But simply having the elevated T4 is an improvement- hence wanting to remain on the 125 dose?
Yes. Although it's still too low, actually. Given that the FT3 is always slightly lower in range than the FT4, anyway, even if you're a perfect converter, your FT3 will still be too low. Hypos usually need it at least 75% through the range. Your FT4 is only 58% through its range.
Also, we’re talking about blood serum levels but am I right thinking a lot of the conversion happens at a cellular tissue level? That a blood test cannot give indication sof?
A blood test can only tell you what is in the blood. It can give you no indication of what goes on in the cells. But, testing FT4 and FT3 together will give you a pretty good idea of how well you convert.
One last question. I’m 4 weeks into a longer process of eating and eliminating foods according to auto immune principles. I can’t imagine the lack of gluten, grains, dairy etc hasn’t influenced my thyroid chemistry already. And there’s at least 6 weeks more eating this is restricted diet plus gradual reintroductions. Do you think I should let my thyroid levels ride this period out fully before I take full tests and/or make any further dosage decisions?
I really don't think that gluten has any effect on your 'thyroid chemistry', that's not why people go gluten-free. Nor dairy-free, for that matter. It's just that when you're gluten-sensitive, eating gluten causes its own symptoms, which are relieved by cutting it out. And, whilst improving nutrient levels might improve poor conversion, it's unlikely to have any effect on the thyroid itself.
Having said that, it's not a good idea to test whilst in the process of change, so I should wait until the end of this process, if I were you.
Getting FULL thyroid and vitamin testing done yourself
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Why take an interest in all the numbers and letters? Are you trying to make yourself worse? I have had Graves Disease for 20years, have had different treatments, and radiation treatments. I am 59years old with heart problems, but why worry about numbers and letters life is too short my friend.
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