I had Graves in 1987, radioactive iodine in 1989, hypo ever since, and pretty stable for years on 175mcg thyroxine. I started feeling really rough in Dec 2014. GP thought I was maybe my dose was a little high, symptoms did suggest it eg exhaustion, restless legs, fast pulse rate. Lowered the dose several times.. in the end to 100. He did so many other tests, even an ECG, and nothing seemed to show up. Then Vit D test... it was 18 (range 50-120) Had high dose Vit D, it's now at a very good level. Increased thyroxine again as by then had hypo symptoms - now back up to 175! But I still feel shattered after doing much, brain fog, some hair loss, cold, restless legs. I even cancelled my holiday in September. GP says it's not an iron problem, but Ferritin was only just in range.
Does anyone have experience of RLS / thyroid / iron / ferritin connections?
Please... does anyone have any ideas for me? I go back to GP in 2 days for latest thyroid and iron results. Is this too low for ferritin? I've been anaemic on and off since about 12 years old. And the symptoms feel like that. Should I ask for iron treatment? I can't go on much longer feeling like this.
Sorry this is so long!
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TaraJR
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Oh trust me your post is not too long. Ferritin CAN be an issue with some people with RLS. We should all have it tested, but your ferritin is in a good range (50-70 for RLSer's) The loss of the hair, feeling cold are thyroid issues for sure. There are no hard facts that connect thyroid with RLS, but there are people on here with thyroid problems, and mine is fine, so will let them address that part. When my Ferritin was first measured it was 6! We did iron infusions and we got it up to 152, and it made not one bit of difference with MY RLS. There are some people that are helped by iron, but one should never take it without consulting your doctor. Your ferritin levels are quite acceptable, so I am going to say in my opinion that is not your "RLS issue". Iron overload can be dangerous, even deadly, so if I were you I would not worry about the ferritin. That part I have studied for 20 yrs. Do you take ANY meds for RLS? But like I said, besides the RLS symptoms the others you are describing are most likely thyroid. Brain fog is common in RLS and thyroid disease, lack of sleep will do that to you.
Thanks for all this! I don't take anything for RLS. Actually it's not as bad as it was when Vit D was very low. My worst symptoms now are actually exhaustion, some brain fog, and sometimes my ears ring...
No I won't take iron until I've met the GP next week.
Hi, I also have Graves Disease , currently in remission after Carbimazole treatment. I have had restless legs for over 30 years , In my case they are 2 seperate conditions .My RLS is genetic my mother and daughter also have it.It never made any difference to my legs whether I was hyper or hypo, thyroid wise.I agree your ferratin is satisfactory for RLS.Do you take any other meds as many can cause and aggravate RLS?.Have you also joined the Health unlocked thyroid group , some very knowledgeable people on there,
I also do the Vitamin D thing twice a year with the mega doses. But it does nothing for MY RLS.
Tara, yes, low iron is very closely linked with RLS. If you look on the Johns Hopkins RLS website you will find a lot of info on this. In the UK consultants advise that a serum ferritin over 60 is fine. However in the US Johns Hopkins takes sufferers up to ferritin of 100, and someone posted here who went up to 130 before their RLS stopped. Some, on other RLS sites (have a search on the US ones) have gone even higher.
Your anaemia is undoubtedly the cause of your RLS, but the difficulty is - will raising your levels help you now? I think it is worth a try. Have a good read around. Iron infusion has helped some people.
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Tinnitus is of course linked to anaemia, and hair loss is linked to low iron, anxiety etc. Many of the symptoms of thyroid problems may well stem from the nutrient deficiencies which are so closely associated with thyroid problems, and the overlapping gut problems.
is the main page on the links with iron, and the research studies are interesting. If you go into Pubmed and look at autopsy studies on RLS brains and iron levels you will find some very interesting research.
I had just done a couple searches looking for connections between RLS and hormones. I turned up this medical paper- ncbi.nlm.nih.gov/pmc/articl... something for your doctor unless you are up on medical jargon. What I've seen so far in several sites is that there seem to be connections between iron levels, magnesium, thyroid function, estrogen, dopamine and who knows what else. It all plays into RLS. All these systems are intertwined and one malfunction affects everything else.
Here's a quote from another- "With the onset of menopause and as the body prepares to go into resting from reproductive functions, the hormone estrogen keeps on fluctuating until it finally is no longer secreted. This fluctuation that at times goes so high and at times so low is said to be a reason for restless syndrome. Very low levels of estrogen inhibit magnesium metabolism that helps with muscle relaxation. This causes the leg muscles to twitch, itch, and display the symptoms mentioned above. " consumerhealthdigest.com/me...
This theory has its naysayers, but if you're suffering, I'd think it would be worth mentioning to your doctor. ANY possibility is worth exploring.
There is a definite connection with iron levels. I see a doctor at John's Hopkins (I saw someone mentioned them above....They lead the world in RLS research, I think....I go all the way from Alabama to Baltimore to see them...no one else could help me). He has me going to a Hematologist here. They have talked...the Hematologist had no idea about the RLS/iron connection until he talked to the JH doc... and I get infusions of ferritin every few months....now it is down to about once a year. It helped the RLS for a while with no meds at all, but then it got worse so I take drugs too. But DEFINITELY check on the iron levels.
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I am getting there but…
Worsening Restless Legs, Please help
For All Those With High Ferritin (and possibly low iron)
The Next Step
Is this RLS?
