I'm really hoping you guys can help me out with your expertise again.
For a little background I was diagnosed hypothyroid 18 years ago and put on Levothyroxine, I felt absolutely awful, gained 20kg, slept constantly, whenever and wherever I could , with bone aching tiredness, this continued for years with my Levothyroxine being increased to no benefit.
Eventually I learned about T3, and saw two separate endocrinologist, requesting to be trialled on it, both point blank refused. I took matters into my own hand and begun ordering T3 online. I've been taking it for 3 years and feel wonderful.
Recently my GP has insisted I have my thyroid bloods done, which I try to avoid as I'm aware taking T3 messes up the results. So my results today are
TSH <0.05 (0.4 - 5) - My TSH has been suppressed for 3 years on the T3, GP usually doesn't mention it.
T4 - 8 (9-19)
I was originally on 125mcg Levothyroxine
I now take 25mg T3 & 50mcg Levo and have for 3 years.
My GP is insisting on seeing me in the surgery, I have many reservations about telling him I self medicate with T3, I feel like this really won't go down well, but also I'd like a referral to an endocrinologist to monitor my T3 but know this is highly unlikely in the UK.
My head is spinning a bit, should I start monitoring my own T3 with home kits and try to avoid the unhelpful GPs
Should I go and confess to the self medicating and ask for an endo referral?
Should I increase my T4 a little and keep the T3 at 25mg?
Any advice, support, wisdom is genuinly greatly appreciated!
Thanks in advance 😊
Nikki
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nikki_morgan04
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NO! don't "confess" as you're doing nothing wrong in sourcing your own thyroid hormones and you feel well.
Tell him that blood tests are for levothyroxine alone - both were introduced at the same time - as Big Phrma wanted a share of the $$$s ££££s and I am assuming that those who don't recover on levothyroxine (I am one) have to trial other options - options that the BTA do not approve of (how would they know if they themselves don't have hypothyroidism or if members of their families are not improving on levo.)
You have to actually have personal experience of this disaster of Rules & Regulations which are all connected to levothyroxine - as far as I know particularly the TSH which varies throughout the day.
Before the introduction of levo we were all diagnosed upon clinical symptoms alone and given NDT - NO BLOOD TESTS then - just adjusting dose slightly each time until symptoms resolved.
The BTA have withdrawn NDT from being prescribed (with False Statements) as well as T3 - limiting options for those unwell on levothyroxine and forcing people to go online to tell their sorry stories and who are frightened of how they will manage without the necessary hormones that SUIT them as individuals in future.
Doctors etc who want to prescribe are prohibited and also may lose their livelihoods/licence
One of our estemed doctors (RIP) was hauled before the GMC more than once for prescribing according to symptoms and also prepared to prescribe alternatives to levo to those who were desperate and still unwell. He was always found to be doing nothing wrong but it must have been very stressful for him for doing as he was taught as a trainee.
Your doctor is just your doctor, supposed to be there to help you, not judge you. He is not your boss, nor your father, nor god almighty. He's just a doctor and he doesn't know everything. Far from it. If you cannot come to a consensus on your treatment through informed discussion, then he's not much of a doctor at all. Don't 'confess' to taking T3, just tell him, and explain that's why the test results look the way they do - because I doubt he would actually know. But, it is your body, you do what you like with it. And there is no law to say that you have to do what your doctor wants.
As to your treatment, I wouldn't change anything, if I were you, until you've had all the proper tests. So, getting private tests done is a very good idea.
Would suggest you get full Thyroid and vitamin testing privately FIRST
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Some people need good levels of FT4 and FT3
Obviously FT3 not tested
FT4 is rather low
Vitamin levels need testing at least annually
What vitamin supplements do you currently take?
Come back with new post once you get results
If you have Hashimoto's low vitamin levels are especially common
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3
Some years ago I was given this advice:- Tell your GP "I can do this on my own, but, I would much rather have your support". It worked and I'd recommend explaining about the T3 and using this expression.
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