I was diagnosed hypothyroid at 32 years old and I have been on levothyroxine for 30 +years and last year decided to do a genetic test for DIO2 gene which came back positive.
The reason I decided to do the genetic test was because my mother died from undiagnosed under active thyroid and both my daughters also have hypothyroidism and I have never felt really well. My Gp continually wants to reduce my levothyroxine now because my tsh is out of the nhs lab range tsh 0.02 [ref range 0.27-4.20]and my ft4 is top of the range at 20.0 [ref range 11.4-21.4 ]I refused to lower my dose again in august 2022 as I have tried unsuccessfully for the last 3 years after each blood test and I couldn’t function in January 2022 after I had lowered the dose for a duration of 10 weeks back in November 2021- gradually feeling worse as each day went by, I didn’t want to do anything just sit all day with brain fog, feeling freezing cold and my hands which are normally dry were very dry and cracking even on the palms, and dealing with a constant headache.I saw the Practice Pharmacist not Gp and told her how I was feeling they wanted me to carry on the lowered dose for another 4 weeks.
One morning in February 2022 about 10 days after talking to Pharmacist I decided enough was enough and upped my dose and informed pharmacist and GP I did not agree with continuing on a lowered dose as I was not feeling any better just getting worse and that now I believe it was detrimental to my health and well-being and i accepted the risks of taking a higher dose than needed - Osteoporosis and AF.
In August 2022 I decided to test for DIO2 gene and in November GP requested Tsh Ft4 and ft3 blood test just to make sure I wasn’t out of range - then he was happy to let me carry on with a dose of 100 mcg daily. I now know that I have the DIO2 gene and also my ft 3 result was not great about 35% through the range. 4.3 [ ref range 3.1-6.8 ] it has been tested years ago at hospital and it was 5.0 in the same ref range. I don’t think anyone is taking t3 at the practice when I looked online for prescribing in the area.
I feel awful if I have the slightest change in dose and after finding out my ft3 was not very good even though my ft4 was 20.0 [ref range 11.4-21.4.]which is the best it has been in years ! which then prompted GP to request ft3 test concerned I was taking too much t4 again! I just thought perhaps I feel awful because I’m not converting ? There is no continuity of care and Like many I can’t remember the last time I saw a GP face to face . I have struggled over the years just accepting this is the way it is. I now would like to try Liothyronine t3 without a prescription I know how hard it is to get it prescribed on the nhs and wondered if anyone could private message me with any reliable information ? As to where I can source this hormone safely ? I live in the uk.
Many thanks
FAE1960
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Fae1960
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I only had antibodies tested a few years ago when I became aware through this site to test them ! I was trying to get one of my daughters help and diagnosed hers were raised mine weren’t ! She is homozygous inherited from both parents and currently on T3 and doing well and I would like to say a big thank you to everyone including yourself for helping that journey happen.
I haven’t had vitamins tested for a year but on advice from Gp then through text message to take October to April I tend to supplement all year not always every day.
I don’t seem to be able to find information for our GPS prescribing T3 and a friend worked for a local surgery and said she didn’t know anyone on T3 ! after the conversation I had with clinical Pharmacist at my surgery with the dosage change 2021 she said they dose by tsh not symptoms ! And that her own mother had reduced her levothyroxine down to 75 mcg a day from 175 mcg by practising yoga ! So I thought I would try to source my own to see if I benefitted from adding it after all these years.
Hi I didn’t have TG antibodies tested only TPO antibodies which were negative.
Thank you for the information. I was under the impression if I went private nhs didn’t want to know ?
Just found my surgery on the prescribing website no one is being prescribed t3 at the moment ! there is one surgery in the town prescribing t3 but at the moment none of the surgeries are taking on new patients so I can’t swap.
You could go down the private endo route if you can find one that sounds good on the Thyroid UK's list. If you can see one who prescribes T3, and does NHS work as well, you could then transfer on to his/her NHS list (bear in mind that could take many months, as the backlog is huge)
A GP can only prescribe T3 after a successful trial form an NHS endo. If you get T3 prescribed privately, you'd have to start again on an NHS waiting list to get T3 from the NHS.
Northamptonshire ICB unfortunately isn't good for T3. Their policy seem to be not to prescribe in primary or secondary care. That is completely against all national guidance. Are you on Facebook? If so, join us on ITT Improve Thyroid Treatment. We have template letters to send to ICB, endo, GP, MP, Healthwatch etc that includes all national guidance and parliamentary statements on T3.
thank you for taking the time to reply I am not on Facebook. I am aware of the ITT as I helped my daughter get the t3 treatment she desperately needed last year in North Yorkshire. Her surgery tried to avoid treating her even though they do prescribe t3 because of the cost ! I know nhs is struggling and the private route is probably the way for me to go ! I don’t have faith in my GP’s surgery anymore. I can’t take Teva brand and all but one pharmacy offers Teva and It was a nightmare every month getting my prescription so I kindly asked GP to name the brands that I can take and they said they can’t and then I found the gov.uk website saying they could if a patient couldn’t take certain generics and didn’t do well on them . Why do we only get prescibed 28 days that must be costing the nhs more to fulfill every prescription ! Why do we have to fight tooth and nail when usually we don’t feel well enough. That’s why I thought if I can purchase some t3 to try I would.
re. the 28 day prescribing ( which is utterly ridiculous and i'd be ranting too if they tried changing mine to that) . you ? should be able to get that changed to 56 days if you can bear to have the argument .. some people have managed to organise even longer than that.
i routinely get 56 days (never had to ask it is just how my surgey does it) , previous surgery used to do 3 months.
? i think helvella maybe possibly be able to point you to something useful to support negotiating a longer prescribing interval .
lol ! Sometimes I get on my soapbox ! it used to be 3 months, but now all the surgeries in the area can only prescribe 28 days ! It’s the least of my worries at the moment just keeping on the dose that I can function on to some degree is my priority 😂 I just think the nhs got a lot worse before covid ever reared its ugly head !
I wrote this some time ago - but have only just posted it. (Previously posted the text here a few times.) Just went through and checked the links work (one didn't so I found a working link instead.)
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