Hello, could anyone give me bit of advice what should I be asking from a GP next or what tests to get privately to understand what's happening? I'm on 112.5mmg levothyroxine (longterm dose that seemed to be stable for last couple of years)
My FT4 is 19.6 pmol/L [11.0 -22.6] and TSH is 13.33 mu/L [0.2-4.0]
they only booked me for a routine phone call appointment.
I also been last few weeks having quite bad unexplained allergy reactions to various foods, that don't seem to be consistent and wondering whether it might be related.
Thank you for any advice or explanation of possibilities of what might be going on. Thank you
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Susan88
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FT4 is 19.6 pmol/L [11.0 -22.6] and TSH is 13.33 mu/L [0.2-4.0]
One thing that might cause these odd results is very low Free T3.
Free T4 converts to Free T3, but some people can't convert very well at all. Since Free T3 is the active thyroid hormone required by every cell in the human body, when it is in short supply it will cause many hypothyroid symptoms.
Another possible answer to your problem is that your results are affected by something called Macro-TSH. I couldn't explain this, but helvella can. If this is affecting your results then you would have to make sure you got tested at a different laboratory in future, one that uses different machines and protocols to the one you have been tested with up until now.
Another factor is connected to biotin intake. High doses of biotin (which is often sold as a separate supplement or as part of a B Complex or multivitamin) can distort some testing protocols or machines. People can end up with unexpectedly high results or unexpectedly low, and it isn't possible to predict what might happen. In the event that you are taking lots of biotin you should always do testing having given up biotin for 5 - 7 days before tests. The higher the dose the longer you have to give it up. 5 - 7 days would be the maximum time to give up biotin. For low doses give it up for about 24 hours.
I have just added some information to my general blog on factors that interfere with thyroid tests - TSH, FT4 and FT3.
The macro-TSH information is mostly towards the end of the blog. And there is a picture!
macro-TSH is formed when an antibody binds to TSH.
The combination of the two registers on several lab assays as a higher reading for TSH.
macro-TSH also has a longer half-life than normal TSH which leads to higher assays than would otherwise be expected.
macro-TSH has a lower stimulatory effect on the thyroid so even a genuinely higher level might not stimulate the thyroid to produce and release as much thyroid hormone as normal TSH.
Thank you humanbean ! that's really helpful.... Should I basically ask for repeat test and include T3? Is it worth asking for full blood test and test also vitamin levels and kidney/liver function? Or is there anything else to ask for?
I am also experiencing high levels of histamine, and I believe there is connection bewteen high TSH and histamine?
I'm pretty sure it's been the same lab as over last few years that did my blood tests tho..
Should I basically ask for repeat test and include T3?
I think that is two different issues. Asking for a repeat test might be a problem if you are using the NHS because they have now convinced themselves that all they need to test is TSH. And patients only need testing once a year if they have been on treatment for a while.
And "standard of care" is to only test TSH. Doctors might refuse to request Free T3 and even if a doctor does request Free T3, labs might refuse to do it.
You would be more likely to get all the results you want with a private test.
I don't know who others are testing with just now. There are more and more new names coming on to the market and I can't keep up with who is reliable and has good prices.
I start with this link because it gives discount codes for some companies :
But, as I said, I haven't kept up with all the new companies, so you might want to ask in a new question for what other people recommend and any discount codes.
Thank you, this is really helpful to know. I didn't know it's been general NHS policy now. I'm on levothyroxine longterm and last 2-3 years they only been doing TSH as you say and refused to do FT4 when I had a wobble with symptoms. Generally I been probably most stable last 5 years ever really. But I managed to convince a GP to get FT4 and FT3 done about 5 years ago, but that might be before this change.
Would you have an idea what would a GP/NHS suggest to do next with my current results? (far too high TSH and FT4 within a range). I do have the classic symptoms of the exhaustion and quite madly struggling with temperature regulation.
And another question - if I get tests done privately - would you know if they accept the test results and would they adjust my meds accordingly based on those results?
I am also experiencing high levels of histamine, and I believe there is connection bewteen high TSH and histamine?
I have never tried to reduce histamine myself, but I just googled "how to reduce histamine with hypothyroidism" and got quite a few websites returned. I don't know which ones are worth reading.
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