For those of you in the UK and taking Liothyronine from your own sourced supplies, how have you dealt with GPs and routine NHS blood test, have you had problems or kept quiet about it?
I've been feeling so much better on T3, although I started HRT at the same time which I think's also helped. I'm now taking my full 100mcg Levo dose, and adding 1/2 of a 25mcg T3 tablet daily and certainly not over medicated. My physical energy and cognitive function have both improved dramatically over last couple of months. I'm going to see the GP for an HRT review, and want to ask for T3 on the NHS, although I'm expecting a negative answer.
I know NHS blood tests rarely include T3 results, even when GP's request this the lab ignore the request if they consider the TSH and T4 to be in range, however if I declare that I am actually taking Liothyronine will they have to test T3???
I have kept quiet about it and cheated for NHS tests to ensure FT4 and FT3 are nicely within range and don't cause any raised eyebrows. I did manage to dodge them for 3 years but the surgery did catch up with me and I had to have a test with them.
I have been very diligent with self testing since adding T3 so that I keep my FT3 within range, although I have done a lot of tweaking over the last couple of years so restesting was necessary anyway.
I know the reaction from my named GP, she is totally TSH obsessed, will not listen or discuss anything to do with how it's not a thyroid hormone, etc. I can't get my TSH into range, after keeping a record for the last 20-odd years, it never comes into range despite dose of Levo. So it's a difficult one with that GP. The Nurse Practioner has discussed it with another of the doctors and they are happy with my TSH suppressed as my FT4 and FT3 tested mid-range with my last test. Unfortunately, even though they are happy, my named GP isn't and I get this lecture whenever I see her, she brings it into every consultation whatever I go to see her about.
So no, I will not tell them I am taking T3, I will have to continue self sourcing. If I did tell them then I wouldn't be surprised if they said I must take Levo only and if I don't comply then I should find another surgery (impossible as I live in a rural area and no others for 10 miles, and only rural public transport).
If you tell your GP, who knows how s/he will react. And if you do they are not obliged to test FT3, they should but even patients who are prescribed T3 don't always get FT3 tested.
I self treat with liothyronine and have told my gp and surgeon ( TT for thyroid cancer). Neither are happy but I need to have a supressed TSH for a couple more years. I think it will be more challenging once care handed back entirely to gp. Gp completely unable to order blood test for ft3, it can only be ordered by a hospital consultant in my area, which is done yearly for my cancer follow up. I then supplement with private blood tests either at 6 months or 6 weeks after a dose change. I do think it is important to let gp know but completely understand why many people don’t. Not sure f this helps, good luck.
I haven’t told my GP I’m also taking T3. The last time I spoke to them I was so ill, begging for help and more testing and got shown the door. So now I’m getting T3 through a private doctor, constantly getting private bloods done to monitor and use my GP for my T4 supply. I had to have a NHS test a few months ago after they threatened to cut off my supply. Told me off for not getting it done when they hadn’t (as they usually did, remind me when I pick up my script). No idea what the result came back with, I suspect they tested TSH only. Didn’t want to draw attention. It’s not right, but we really have been let down big time with our treatment, that I don’t feel I had a choice. I wanted to live, and I felt like I was dying before.
I agree we’re being badly ignored and let down by the majority of GPS and consultants evident by all the messages on here.
Won’t your GP be led by the private doctor at all? It stinks of NHS cut backs when only private Doctors prescribed T3, obviously my concern is I’m obtaining mine from pharmacy links abroad. I can’t see how any GP can argue against a prescription given by another qualified doctor? It’s a crazy world 🙄
In January, my TSH had dropped from 2 to 0.2 (0.3 - 5) with FT4 = 23 (9 - 25).
In March: TSH = 0.13 and FT4 = 21.
I told GP my dose of Levo hadn't changed but I was still feeling hypo, and asked for FT3 to be tested.
Now I'm at TSH= 0.06, FT4 = 24 and FT3 = 5.2 (3.5 - 6.5), so my FT3/FT4 ratio isn't brilliant, and I think I'll have to play dumb and rely on private testing and self-treating from now on.
Yeah, I too had my t3 tested on odd occasion only when I very strongly insited, usually by endo and on average every 5th test.
But general NHS approach in recent years is not to test t3 at all and recently they leave out t4 as well.
I have new blood test form issued week ago I asked for liver and iron studies. I didn't ask for thyroid hormones at all but because I needed hard copy I've learned my GP added herself (!?) thyroid markers - TSH and t4 only!
Welp, I plucked up courage and explained my rationale for wanting to drop Levo by 75 mcg and substitute a grain of Thiroyd. GP wanted to know what total of Levo I'd be taking (to avoid excess prescribing, I guess) and wants me tested in four to six weeks, rather than leaving it eight to ten.
My thyroid output has been "spluttery" both before and during treatment, and I've felt let down with testing when my TSH went above 1.0 so didn't trigger a Free T4 test. This was after a dose reduction, and the previous test had been messed up due to biotin in a supplement.
I kept away from the docs and they assumed I was just taking Levothyroxine. They had no idea I’d transferred to taking my own sourced Liothyronine only. Eventually, they asked I have a blood test to check my levels. They rang in a tizzy and asked why my T4 was non-existent and my T3 was top of the range. I came clean and said I’d been doing amazingly well on T3 alone. They tried to put me off, saying it would ‘fry my brain.’ I then had a private blood test done, which showed I have a DIO2 conversion problem. Then they sent me to a great endo in Sheffield. The upshot of it is that I’m now prescribed 60mcgs a day of Mercury Pharma and I feel very, very well on it.
Oh crikey there’s proof that taking your own health decisions worked! Well done. Great to hear that you’re now getting the T3 prescription from an Endo. I’ve had the Blue Horizon gene test, they give two results (different SNP) for both DIO1 and DIO2 plus orhers relating to thyroid functions. I don’t appear to have the genetic problem for severe T4 to T3 conversion but I have less than optimal conversion for both DIO1&2 and fault with thyroid reaction to TSH, so overall slower conversion and likely affecting ratios of hormones. So I doubt I’d receive T3 from NHS on that basis unfortunately. It’d expect my bloods to show suppressed TSH but I’ll cross that bridge when I get to it and keep quiet for now. I am going to ask for a thyroid scan though, based on high levels of both antibodies
If you feel well and healthy with what you’re doing and monitoring pulse rate and temp, I’d just keep going with that. It took me almost six years to convince the doc that I was being poisoned by all the unconverted Levo swilling around in my system. Many of them try to shoehorn us into the top third of the bell curve, despite the fact that we may not belong there!
Must admit I don’t check my pulse or temperature, I know before I was diagnosed I had a very slow pulse in fact I joined a gym because of the weight gain and during a fitness assessment the trainer thought her blood pressure machine was broken 🤣 Then announced I had the expected pulse of an elite athlete 🤣🤣🤣
Think your GP, if listening would insist on referring to Endo for confirmation of need. The Endo if listening might agree to combination trial. You would very likely have to be prepared to fight. Giving backup evidence of bloods, signs, symptoms recorded over time can be helpful. If you don't try you won't know, so it depends on your energy and determination. You would benefit from having additional references with you and by checking out the Endos in your area to see whether there are any inquisitive enough to give you a trial. Good luck, it can be done.....😉
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