So - not sure if I may have a conversion problem going on. I still don't feel optimally medicated on only 50 mcg Levo, been on that amount since March. Last saw Doc early May and she basically said 're-test in 6 months, don't want to bump your Levo up higher'. I agreed to that, thinking that if I feel worse I will simply do a test sooner, which I did 2 days ago. Results shown, top ones are 27 April 2017, lower ones, 31 July 2017.
You can probably see the problem right away, and guess what my doctor's reaction will be. My TSH is, unsurprisingly, creeping up again, my T3 is falling but my T4 remains stubbornly at the top of the range, if anything, creeping upwards. I know what my Doc will say, she won't want to increase my Levo with that situation. I still don't feel right, I'm always cold with freezing hands, even when it's hot! I still have fatigue although not as bad as last year. I find it odd, because when I was first diagnosed my T3 was at 5.64, but it's been below that ever since, in every test, at its lowest when I had Bell's Palsy.
I am gluten and dairy free, supplement with B12, Vit D, Magnesium, Selenium, Vit K, B-right complex. I re-tested my ferritin and it's rising, not optimal yet but I'm happy it's headed the right way.
So what do you lovely people suggest? Buying T3 off the 'net sounds terrifying! Any other routes I could consider before I think of doing that? I am disabled and unable to travel far at all (beyond my town, basically).
Those results do show poor conversion, April the FT4:FT3 ratio is 4.37 : 1 and July it's 5.2 : 1 and good conversion takes place when the ratio is 4:1 or less.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, says in Pulse Onine Magazine
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
However, adding more Levo isn't always the answer because that will push your FT4 over range and you'll have lots of T4 sloshing about that isn't converting well to T3 and you can end up with reverse T3, which is what happened to me when my GP allowed an over range FT4 (up to 30 at one point) with suppressed TSH and FT3 about half way through it's range.
So you need to make sure conditions are optimal for thyroid hormone to work properly and conversion to take place, and that means optimal levels for all nutrients and supplementing with selenium can help with conversion.
Thank you for such a detailed reply, SeasideSusie.
Vit D 84.2 > 50 adequate (am supplementing with 2,200 i.u. daily to boost it further)
B12 - haven't retested since my original test a year ago which was 342.7 (191.0 - 663.0) - but I've been on 5,000 mcg daily since October and most of my peripheral neuropathy symptoms have gone.
Folate - again not yet retested for one year, original was 10.93 (4.60-18.70) but I supplement with Jarrow B-right.
Ferritin is up from 44.63 (13.0 - 150.0) in Aug '16 to 62.9 (same range), test just done.
My doc's very keen not to push my T4 up over range, and I have to say I agree with her.
Isn't NDT going to be just as tricky to get hold of as T3? I admit I've not really looked into it, had fingers crossed I'd be able to get by on Levo alone. Perhaps I need to persist in 'getting by' on Levo for awhile longer whilst I get those vits/minerals to their optimal levels?
Ferritin needs to be at least 70 for thyroid hormone to work properly and conversion to take place, so you need to get that up, I've seen 100-130 recommended for females.
I don't know whether NDT is difficult to get hold off, I think the supplies are there, it might be more a case of what payment method can be made.
Hi Hidden , sorry to kidnap your post but I wanted to ask about your B12. I was tested recently and my levels were 308 (200-900). I wrote a letter to my GP listing my neurological symptoms and asking to consider B12 injections even though Im within the range. I saw my GP yesterday, and she said that since my B12 is within range, then my neurological symptoms could not have been caused by low B12. She also refused to do any additional tests like MMA since B12 is normal. Im going to supplement B12 myself now. Im happy for you that most of your symptoms have gone now after a year, but how soon after starting 5,000mcg B12 daily did you see first improvements?
No problem, moniacho. Took quite a while, months, really. I had numbness in the tips of some toes, the relief has been very gradual, more a case of realising, oh that toe feels normal now! I don't feel as much 'brain fog' either. I think you simply have to chip away at it and eventually, hopefully you'll see changes for the better. My GP also said mine was 'normal' but just to eat more leafy green veg!
You are undermedicated to have TSH 2.99 while taking Levothyroxine. Your GP should increase dose even though it will send FT4 over range. Some people need FT4 over range to deliver good FT3.
Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Thanks, Clutter. Yes I hear what you're saying, I am nervous about pushing that T4 too high though. But I'll go re-read everything. Always manage to spot something new!
Well, I'll make a doc appt and discuss it all...at least my doctor is a reasonable lady, so I'll see If I can get an increase. I suspect if I do it'll be another 12.5 mcg a day like last time!
If I were you, I wouldn't increase the T4 any further, it will just convert to rT3. You do have a conversion problem, and you do need T3. It's not at all terrifying to buy T3 on-line. Ask people, in a new post, to PM you their trusted sources, and you can safely assume that what you will be getting is the real thing.
Thanks greygoose, might as well bite the bullet I suppose. Would that mean taking T3 only or would I start off by decreasing T4 a bit and adding in a tiny bit of T3 and see what happens?
I would try to address the conversion problem first as it's also beneficial to your general health as well. Vit D, folate,ferritin and B12 need testing and then post again for advice. Being in range isn't good enough and doctors are often not suggesting the best treatment. It doesn't improve over night. We are talking months not weeks to feel the full benefit but I did this before I changed to NDT and have been more stable than many have posted.
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Always manage to spot something new! 
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Latest results
Latest test results - am I 'cured'? 
