Is it possible to get T3 prescribed on the NHS? I am in Norfolk and I think there was some action around it? Or is the only option to go private?
In the 7 months since I've been diagnosed with Hashimotos my T3 has only gone from 3.22 to 3.8 even though my T4 is now in top third. But my latest TSH is 0.13 so I presume I can't take more T4. I still have hypo symptoms including quite bad brain fog/joint/ muscle pain/ fatigue/low mood.
Is 7 months long enough to assume I'm not able to convert the T4 very well? I eat Brazil nuts, am now gluten free and all my vitamins and iron are now optimal thanks to guidance on this forum. Any insights gratefully received. Thanks!
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Yes I did test at 9am after 24hr gap in Levo. Am on 100/75 Teva alternate days. I don't think I have a problem with it. Ferritin is now 70. Vit D, B12, Folate all optimal according to what I've read on these forums.
Have you had coeliac blood test done and are you on gluten free diet or dairy free diet
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
I am gluten free but not Celiac (was tested a couple of years ago) Not sure I could do diary free as well 🙄. My gut isn't really a problem except for being a bit constipated sometimes which makes me think I need T3.
noon I get T3 on the NHS. I had been on 100mcg levo for 4 years. I had to make a case for getting a trial of T3. T3 has to be prescribed by an NHS endo in the first instance so the first hurdle is to get a referral and appointment with an endo - has to be NHS - if you want NHS t3.
I said I was gluten free - my vitamin levels were all in the top third of range - my ft4 was 60% through range while my TSH was already below range. This suggested that I did not need any more levo T4. However I was still symptomatic and my ft3 was only 17% through range suggesting poor conversion.
Thanks Lalatoot, that's useful to know. My GP referred me to an Endo when first diagnosed. The Endo then wrote to me with some results about cortisol and said he would check my next bloods and if I reached TSH 2 he'd refer me back to 'the care' of my GP, which I presume has happened.
Could I write to this Endo stating a case for a trial of T3 or should I go back through my GP again??? I don't know whether they'd say it's too soon as I've only been on Levo 7 months and you'd been on T4 for 4 years so I guess you had a stronger case. The Endo put me on 75mcg 3 weeks after GP started me on 50mcg saying it was because my TPO was 600 and I had a 'slight goitre'. My TPO antibodies latest medichecks have gone down to 470.
I too had been signed off by the endo. I went to the GP - I made an appt with one who listens rather than one of his dismissive colleagues - and he listened and read my presentation of my case then he referred me again to the endo.
My T4 was at the top of its range and my T3 at the bottom. I was only converting 8% to T3. I found out by going private I am a very poor converter. I was privately prescribed liothyronine T3 along with Liquid Levothyroxine T4. Oh boy what a game changer. I was in a mess on T4 levothyroxine alone and had been going down hill for over a decade. My GP admitted he knew nothing about the thyroid and only followed blood results alongside ranges. He had no clue about T3 as they never did T3 blood tests. I had the 3 month trial with T3 and T4 medications which changed my life for the better without a doubt. My NHS endocrinologist still refused NHS T3 prescription! My GP and private only endocrinologist intervened and then I got the NHS prescription. It wasn’t an easy road but now I have NHS support. If I was you I’d consider going private only not NHS private. The Professor of endocrinology I still have an annual consultation with is based in Oxford. He does zoom and telephone consultations as well as face to face. So no need to travel. It’s not expensive either I’d say. He just needs a GP referral letter and your latest bloods. If you want his details just private message me.
Could you send me the details of your endo please? I’m in the right area. I currently see a private endo but I’m starting to hit a roadblock. Options are good to have. In case.
Hello, I also live in Norfolk, I was prescribed T3 just over a year ago by an Endo at NNUH. I asked to be referred by my GP as my T3 was just under range. I had to wait for about 10 weeks. I took along a page of notes explaining my thyroid journey so far, which she said was a great help. I did not have to ask for T3 as she just offered me a 3 month trial as a matter of course ! Following the trial another meeting and blood test and she refferred me back to my GP and I have T3 now on repeat prescription. I have to say It is not a magic pill and I am still tweaking my medication but it has helped immensely with brain fog and feeling more like my old self. So good luck and I hope everything works out for you.
Do you mind sharing your T3 journey please? How much did you start on? How much did you increase by and what dose are you now? Also, has it changed your symptoms?
I started on 5mcg along with 50mcg levo. Worked my way to 20mcg T3 and 50 levo by adding 5 mcg T3 every 2 weeks. After 8 weeks on that final dose my ft4 was 0% and my ft3 76% and I felt unwell. I slowly started decreasing my T3 dose and increasing my levo dose. After 2 years of adjustments I ended up on 100mcg levo and 7.5mcg T3. This seemed to suit me so I stayed on those doses. 18 months later I am still improving ann happy on that dose..
Hi Confide55, fellow Norfolk person! Good to know NNUH might prescribe T3 as I know some areas won't prescribe it at all. Hope things work out for you too with your T3 settling down. It's all such a waiting game!
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