Having moved home and ultimately GP and health authority area by just a few miles I’ve had my T3 withdrawn and T4 cranked up from 100 to 150mcg. “Take this form and have a blood test in 6 weeks”.
Blood test completed and the results are in:
“I am pleased to inform you that your fT4 remains normal at 15.3 and your TSH is nicely under 1.5 at 1.3”.
Which is great if you’re trying to prove that you can push down the TSH level by increasing the levothyroxine dose, but doesn’t actually look at whether my body can use it effectively!
No follow-up appointment has been offered to check on my wellbeing. I have reported issues to my GP only to be told “there’s nothing I can do”.
Written by
Chillymortal
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So you need to get full private testing of thyroid and vitamins
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Vitamins very often crash right down when T3 is suddenly withdrawn
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly
please email Dionne
tukadmin@thyroiduk.org
You may need to see a private endocrinologist to get prescription, certainly initially
Roughly where in UK are you?
What CCG area are you in?
Write to your MP, Lord O'Shaughnessy, Lord Hunt of Kings Heath
Thank you. Paying for private blood tests and appointments is currently beyond my means. I’ll look into your other advice. I am now in Colchester which I believe is North Essex group, having moved from mid Essex.
Hi chillymortal, it’s beyond words why do these Gps do this, looks like you may have to try a different dr at the practise and take printed guidelines for T3 once prescribed, and tell them how your feeling, I’ve struggled for some time with drs but now I’m more assertive and manage my own levels with diet and T4 only, I was offered T3 by a nice endo in a Colchester hospital but my dr would not give it to me based on she did not know enough about it, so if you need a endo name just let me know, he is NHS.
That is an excellent piece of advice SlowDragon. I hadn’t thought of using PALS. I had to use them in the past fir another issue concerning a close relative and they were excellent.
Please please please find an integrative physician who specialises in hormone assessment & treatment . They will look at thyroid issues as a whole body illness, rather than simply favourable blood panel results. I sold my car and engagement ring to afford to treat this dreadful disease.....self advocation seems to be the only way forward for most of us. If you must...then scream from the highest mountain that you demand to be heard.... you demand the very best treatment available.... life is for living, to hell with Hashimotos/Thyroid disease.
Next step is to apply to ccg for individual funding to get t3 reinstated. If you were stable on it before they are not suppose to stop it but in the real world they do. Mine was stopped due to cost but i got it reinstated by ccg who make all the financial decisions. My ccg told me openly they stopped everyones and only those who fight it/apply for individual funding will get to keep it, they said they knew most wouldnt so they save 9 out of 10 t3 prescriptions. Be the one in 10 who keeps it, get straight onto your ccg. xx
Good luck with the appeal, persistence pays off. Its so naughty what they get away with, some people are too ill to fight them and they use this as a way to dump people back on levo. My endo did private prescriptions for the period when mine was stopped and i got my t3 cheaply in france with the prescription, so self source while you are waiting. x
Oh geez, that is a miserable thought. The fighters will get their way but the meek will suffer in silence. That is not the way it should be. To all the fighters out there, drag a couple of meeks along with you - as @endomad has tried to do here.
I have read your post and some of the replies. If you don't feel that you are getting the answers required or you have new symptoms or issues, then consider contacting a Homeopath findahomeopath.org this is the register of all qualified Homeopaths in the UK. There may be one near you.
I rate homeopath highly, have friends who are homoeopaths, as well as students who are, and I paid a fortune to several homoeopaths, two of them excellent and highly regarded in the profession for help with underactive thyroid. It was no use at all, as reallyfedup123 says, even the best of them do not have an answer for thyroid problems, and are open about this.
In my case I simply wasted hundreds if not thousands of pounds and would highly recommend others not to make the same mistake.
I saw a homeopath last October to January, he swore blind he could replicate my T3 (I only take T3), by January i was off my head, probably swirling towards myxodema madness. I was furious with him and he set me back by 6 months or so. Ultimately T3 is a hormone replacement.
I had been on T3 only for at least 10 years when I was informed it was to be de-prescribed. I paid for the DIO2 gene test (Regenerus Labs) about £160, it returned as dodgy thyroid gene from one parent. Then armed with that print out plus about 6 others - ie British Thyroid Association ruling, medical papers stating that T3 is vital for heart function, the Hippocratic Oath, etc. I turned into a "complete bitch" to keep my T3 prescription. It does seem to be true .... you need to fight and argue your case in a very logical, controlled and proactive manner. Difficult when not feeling well but has to be tried. I now have to see an endo every 6 months to smile and be a "good girl" to keep my prescription. Good luck
Yes, you are right, I can't do "bitch" very well but I did turn into a complete "lunatic" for a couple of weeks when I had to go clawing my way around for a new doc and some NDT.
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