Hi all, I 've been on 75 mcg levo for about 9 weeks.
Results since January show conversion mostly dropping as I increase Levo. I just retested, after waiting a few weeks to see if symptoms settled. Test results in photo.
Endo could see conversion wasn't good and said to try selenium supplement. He also said I can have a trial of T3 later on, but I'd have to pay for it myself. He wrote to my GP and said to keep my TSH under 2, and said I was now clinically euthyroid. (hmmm , with T3 at 29% at that point)
If I took more levo (independently - as neither GP or Endo will increase it) is it likely that it would improve my T3 by much?
I'm on 75 Levothyroxin, and I'm 52kg, so 83 mcg would supposedly be the correct dose for my weight.
Or should I just ask for trial of T3?
Worst symptom now - constantly achy neck/ back/ shoulders/ hips. Had worsening aches/ pains for a couple of years before diagnosis, but much worse since. No improvement over 6 month, despite physio. I have 2 bulged discs, so GP will blame that, but low T3 certainly wouldn't help. Also, no mental energy/brain fog.
Taking selenium now, plus all the recommended vits.
Would be interested to know if anyone found that adding T3 improved their muscle/joint pain? Or if any other supplements helped.
Thanks in advance for any advice.
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Hi, thanks. I'm taking Igennus super B complex and solgar gentle iron. Last checked vitamins mid February.Vit D 110
Folate 45
B12 active 102
Iron 66
I'm not currently strictly gluten free. I don't have any reaction to gluten (that I'm aware of). I'm 95% gluten and dairy free - just to help keep inflammation low. I'm vegetarian and eat a pretty clean diet.
I've had same brand of Levothyroxin since January.
had a private ultrasound in August. That showed my thyroid was tiny, less than 1 cm each lobe) I passed on the report to my GP, they said it wasn't relevant.
Also I privately tested for TPO and TG antibodies, both very low
So, despite negative thyroid antibodies, most likely Ordās thyroiditis and autoimmune
Are you on strict gluten free and/or dairy free diet
Yeah, endo said I had atrophic thyroiditis. It's hard to know what actually triggers the autoimmunity. My aunt has same condition. I suppose I could get checked for coeliac. I would strictly avoid gluten, if I was sure it was causing me a problem.
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 Hashimotoās or Ordās patients test positive for coeliac but a further 81% of Hashimotoās patients who try gluten free diet find noticeable or significant improvement or find itās 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 as per NICE Guidelines
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
With loads of vegan dairy alternatives these days itās not as difficult as in the past
Thanks for all those links. I did do strict gluten free for about 4 Months last year. Can't say I noticed an improvement, but to be fair I was undermedicated for all of that time. I think I will get tested though. How long do I have to eat gluten for before test?
You could try buying T3 privately (private message me for sources) and check your levels through Monitor My Health or similar. I checked myself for the DI02 genetic mutation which leads to poor conversion of T4 to T3. I have it and need T3 as well as T4.
Thanks, I have considered that. I had thought that initially it might be best to have someone to advise/ monitor me. I'll have a think about it first šIf you've got poor conversion because of DI02, couldn't you get T3 from NHS? Or am I deluded š
Due to cost and medical reluctance in many parts of England T3 is not available through the NHS. And many hospitals will only check the TSH level. Of course if you can get it through the NHS GP and endochrynologist route then all well and good. If you cannot the above is a way around it.
Thanks. No, I wasn't expecting to get it free. Endo told me I'd have to pay if I wanted to trial it. But I know someone who has got DI02 gene problem who gets it on prescription. It doesn't seem fair that you don't.
In case you do decide to try to source your own, I'll reply with this standard warning we regularly post:
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I probably will try a small increase, but my T4 was good at 19.5 - 75% I don't want it to go over 22 -top of the range. It seemed to be my T3 that's the problem.
I'm feeling impatient - that'll mean waiting another 8 weeks to see if it makes a difference. I spent the last 12 months waiting to feel better, hoping each 8 weeks would make a difference. I really want someone to say - Do this, it'll definitely work for you š. But that's not gonna happen, so I gotta figure it out myself. Thanks
Hi, Well on 13th May my TSH was actually 1.84. That was the GP test that he referred to ( no T4 or T3 checked as you might expect). So I did MMH private tests after that to get T3 and T4. He saw those results but still said he didn't want me to increase to 100. That was after only 4 weeks on 75 mcg. So I waited a bit for things to settle.
You're probably thinking why not go back to GP and demand increase, now TSH is over 2 , but there's no way I want to go near my GP surgery again. I think I've developed an allergy to GP's . After the way I was treated during the first year after being diagnosed; just so horribly dismissive about everything I asked about. The message was loud and clear, IT'S NOTHING TO DO WITH YOUR THYROID. It was clear that they didn't have a clue!
I'll probably go with a small Levo increase, and see how that goes. Thanks for replying. š
totally understand your GP allergy...... i have one too . Ok , i would go and see one if my arm turned blue , or i found a lump somewhere etc , but for anything 'invisible' i now fear that seeking their 'help' will do me (and my mental health) more harm than good and so i try and steer well clear.
I 100% agree. I've said before ( and undoubtedly will bore everyone again) but the NHS is usually quite good for acute easy to fix problems, a heart attack, appendicitis, a broken limb.
But anything complex or an ongoing long term chronic problem, especially with their insistence that lab tests are God and can never be wrong, then in my experience you'd be better off consulting the Oracle at Delphi.
They either dont know, dont care, tell you to learn to live with it or more often try and fob you off with anxiety pills. Its ironic they wont give out more Levo because its " dangerous" ( who knew thyroid replacement was the new crack cocaine), whilst happy to hand out highly addictive drugs like Anti D's and Benzos.
Patients like us feel dismissed, patronised, gaslit. And then you get GP's complaining that we are not consulting them when we're ill or worst still self treating. Unless I had something hanging off I avoid doctors like the plague.
Well said Sparklingsunshine. You took the words right out of my mouth. What a dreadful state of affairs. Ive got the GP phobia too, bullied and demoralised.
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