Here is one of the very few issues that T3 has not resolved. The rheumatologist had diagnosed me with restless leg syndrome quite some time back but I was so groggy and brain fogged that I could just do "one step at a time". He also diagnosed me as hypo and said that about one third of hypo patients with RLS get better once their thyroid hormones are properly adjusted. It worked the first two times my meds were increased after reduction, but now I must be part of the two thirds that do not have that benefit. The pain in my legs has now gone during the day but at night I get about 2-3 hours of restful sleep (if I'm lucky) and then the pain fractures my sleep into small periods. When I take CBD I get about 4 hours of sleep. Either way, this is not enough sleep to keep me going in the long run. Every now and then I am so exhausted that I actually sleep 10 hours like a rock, but that is very rare.
Is there anybody here who has/had the same issue? How do/did you cope? Was there anything, besides adjusting thyroid hormones, that was helpful? I would really appreciate any help I can get. Thank you.
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Hypo people get low stomach acid which means they don't absorb vitamin well from their food. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Thank you , Jaydee. I don't have my blood test results on hand but keep a close eye on results for the reason you mentioned (and because I also have celiac). My ferritin and folate are in the upper range, B12 is above range and D3 is in range, but not optimal even though I take 5000 units daily. I have ordered sublingual D3 and will get spray this afternoon in hopes to be more successful in raising my D3 levels. My TPO is normal but my TG is elevated, so definitely have Hashi (with severely atrophied thyroid gland). The only thing, that I can think of, is magnesium deficiency. I take 240 mg. Would you think that I should try a higher dose? Initially I was cautious about magnesium because my GFR was way below range, but now, that I take T3, has gone into normal range. What are your thoughts on that?
I am also gluten and dairy free. I do eat soy occasionally. After an elimination diet it turned out to be okay for me. I eat a whole food, plant based diet and know that there are varied opinions on that. I do think it generally works well for me, though.
Oh, I forgot, I also take HCL with pepsin with meals....when I remember😬 That is something I have been struggling with. I consistently seem to forget to take it, even though it is right there on my dining table. Then again, not all meals are taken at my dining table.
Anyway, that is all the information I can think of, in terms of thyroid and nutrients. I really appreciate your help. Thanks again.
I've heard of people with RLS using a magnesium spray on their legs at bed time which helps some. You could do that in addition to the capsules you are taking.
Can you post the vitamin results?
You could also get an iron panel run as good ferritin can still mean you may have low iron. people with coeliac do struggle with vitamin levels all round.
Just tried to get into my lab results online from March of this year. The provider has closed the page (should have saved a copy). I have the D3 results from September this year, though: 117 (70-250).
Are you sure it's Restless Leg Syndrome? That doesn't usually cause pain, I don't think. It's more discomfort than pain, as far as I'm concerned. With an irrestistable desire to move the legs.
For me, it's definitely related to iron levels. Optimising my T3 has done nothing for it.
My TPO is normal but my TG is elevated, so definitely have Hashi (with severely atrophied thyroid gland).
Being pedantic here, but if you have an atrophied gland you have Ord's, not Hashi's. Same thing but Hashi's produces a goitre, Ord's doesn't. Same treatment, though.
Well, the doc said it was RLS. How accurate that is, who knows? However, I looked it up and it said, among other things, aches and pains that get relieved by moving the legs, which is what I'm doing. Sometimes I have to get up and walk around a bit and then it goes away. Will investigate further.
Restless Leg Syndrome can cause pain The way to differentiate from other causes of pain in legs is the need to constantly move legs just as those of us who suffer creepy crawly symptoms have to do.
Thanks, GG, for sharing your thoughts. I'm aware of the Hashi/Ord's terminology. And I kind of like how SlowDragon usually mentioned that both are usually referred to as Hashimoto's. I guess, if I don't want to bring out the "pedantic" in people, I should just use AIT or Autoimmune Thyroid Hypothyroidism (as to exclude Graves). As I said before, it is better to be precise in my wording. Sometimes I just want to be sloppy.
I will see whether I can get a hold of my tests. I think the NP did everything in the book; hemocrit, tranferrin, blood count, saturation, you name it. She also works with a Naturopath, so is usually pretty good at "optimal" rather than in range. I will contact her specifically about the iron (although the deleted results would be good to have for future reference, as well). Always good to hear from you, Greygoose.
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And I kind of like how SlowDragon usually mentioned that both are usually referred to as Hashimoto's. I guess, if I don't want to bring out the "pedantic" in people, I should just use AIT or Autoimmune Thyroid Hypothyroidism (as to exclude Graves). As I said before, it is better to be precise in my wording. Sometimes I just want to be sloppy. 
For my fellow Restless Leg Syndrome sufferers
Restless legs
Restless Legs
Restless legs - due to low iron? 
