I was diagnosed with Hashimotos in Canada 35 years ago, treatment was successful. Back in UK for 20 yrs, was under endocrinologist for 5 yrs then only GP.Question: it seems that I have only been tested for TSH & T4 under GP, when I recently asked GP about T3 (as am feeling exhausted) was told that it is no longer necessary adter being didchsrged from endo as TSH & T4 are within range.
Is this correct?
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Montreal8140
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No, it's not correct, technically, but that's what doctors have been taught. They mostly don't know what T3 is, or what it does, anyway! And, even if they request it, the lab can refuse - lab technicians over-rule doctors in the good old NHS!
Of course, it's all rubbish. Just testing TSH and FT4 will not tell you how well you are converting your levo to T3. But, they just don't care. They're not in the least bit interested. And, testing FT3 would make treatment more complicated for them, and all they want is a quiet life and not be bothered by these pesky hypo patients nagging them about prescibing T3!
What you have been told about FT3 not being necessary to test is just what the NHS believes. In reality its absolutely necessary and the reason thousands of members of this group pay for their own private blood tests.
Its also necessary to test key vitamins ferritin, folate, B12 & d3 which again many members here do, and then supplement their levels to OPTIMAL. For thyroid hormone to work well we need OPTIMAL vitamin levels.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
greygoose and Jaydee1507 thank you so much! I've just read your bios, OMG, I thought my journey had been interesting but you've surpassed that in style (I may update my bio later)!I'm just about floored with exhaustion at the moment, in fear of losing my job, as the brain fog is impacting my every thought process. I generally forget what I was about to do within 30 seconds so then need to re- trace steps until I remember.
I requested all of my UK medical records about 6 weeks ago, they still haven't been released apparently.
I don't have my Canadian records, or my Greek ones, probably too late now anyways as have been back in UK for 20 yrs.
I do remember the consultant in Montreal Royal Victoria teaching hospital telling me, that blood tests weren't accurate as my body didn't absorb the hormone (or something similar). Is that a thing??? I generally just trusted the Dr's and have no idea, now thinking I have to learn it all.
Feeling so tired and brain dead now, think I'm going crazy in more ways than one.
I'll get my blood test results and report back, in the meantime guess I'll have to pay for private tests, what exactly should I ask fir please?
Thank you for so much for the insight and the push to realise that I need to start studying in earnest.
I do remember the consultant in Montreal Royal Victoria teaching hospital telling me, that blood tests weren't accurate as my body didn't absorb the hormone (or something similar). Is that a thing???
Not really sure what he could have been talking about, although he's right that blood tests are not100% reliable. They are - or they should be - just a rough guide to back-up your symptoms. But, as doctors don't even know what the symptoms are, they use the blood test results as rigid perameters that shouldn't be crossed! They haven't really got a clue how it all works.
So, what do you need to test?
TSH
FT4
FT3
Antibodies if you've never had them done and don't know the cause of your hypo: TPOab and TgAB
Then very easy to get FULL Thyroid and vitamin testing privately here in U.K.
Thousands of U.K. patients forced to do this
Low vitamin levels are extremely common with Hashimoto’s…..and as we get older too
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)
Testing options and includes money off codes for private testing
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