Iodine

[Frunobulax]

I'm afraid I'll have to go a bit off topic before I return to RLS.

For years I have wondered about the state of my thyroid. My T3/T4 are normal, no Hashimoto antibodies, TSH was at the low end of the spectrum very close to hyperthyroidism (TSH in the range from 0.5 to 0.7). However, all my symptoms are consistent with hypothyroidism (the opposite): I'm always cold, have trouble losing weight, pretty low body temperature (95f in the morning, up to 96f in the afternoon), constipation and more. No doctor could explain this, my private theory is/was that my TSH production is hampered in some way, and with normal function my TSH would be on the high side. But this is a just a conjecture that I can't base on any facts.

Now, about 4 months ago I read Sarah Myhills excellent books ("The Infection Game" and "Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis", as I have ME/CFS). She sees medicine very much as I do: Try to find and treat the root cause, don't be afraid to use drugs but use them only if they have a clear benefit. Also she recommends a few things that have helped me in the past (ketogenic diet, vitamin D). So when she recommended iodine, I gave it a try. She gives a glowing recommendation in her wiki and writes more in her book. Her basic reasoning is that we used to consume a lot more iodine earlier (when we ate more fish that is high in iodine), iodine is used up for certain detox mechanisms (including heavy metals) and is suppressed by other halogens that are commonplace in our modern world (fluroide, chloride, bromide). As a result, she says most of us are iodine deficient, and the tiny amounts in salt are barely enough to prevent goiter but this is not a good measure for iodine state. (Feels familiar, a lot of doctors claim that anemia is the only criteria for iron deficiency, totally ignoring RLS.)

So I started on 25mg iodine a day in December. (The daily dose of iodine from salt is something like 1/100th of that.) And I noticed some very positive effects: My body temperature went up (1f on average), less constipation, a bit more energy. My TSH, measured after 3 months, went up to 1.65, quite a jump. I had an ultrasound of my thyroid, and the volume went from very small a year ago (just in normal range but small) to normal volume, almost twice the volume if I recall correctly. So it appears the iodine treatment was very positive for me.

But now comes the snag. My RLS seems to get a lot worse if I take iodine. I had to up my Oxycodone from 20mg to 30mg, by reducing the iodine a bit I'm back on 25mg but get a lot of breakthrough symptoms, especially in the morning after ~6h sleep. (No trouble at all in the evening, thankfully.) Again a wild theory: Perhaps my body is clearing the oxycodone a lot faster than it used to, so it's losing efficiency in the morning. And whatever positive the iodine does, it doesn't seem to help my RLS.

So I'm a bit bummed. My ME/CFS is by far the bigger problem now (basically making me disabled), so I'm tempted to continue with iodine and even increase it. OTOH I know that I'm completely unable to function if I can't sleep somewhat reliably... And I would definitely prefer to reduce my oxycodone, so I'm moving in the wrong direction.

Any ideas? Comments? Ideas? Theories why the iodine exacarbates my RLS?

[ViewsAskew]

Sorry, Frunobulax - not sure how I missed this. Then again, I have no answer anyway!

It seems this is quite the conundrum, though.

How are things going now?

[Frunobulax]

Pretty much unchanged. I'm still not sure if the RLS symptoms are the result of an adjustment period/possible detox, or if they are permanently exacerbated by iodine. Naturally this clashes with my attempt to reduce my Oxycodone as far as possible (viewtopic.php?f=4&t=11160).

I'll see how it goes. I guess I'll reduce my iodine intake for a few weeks once I have stability in my Oxycodone/Clonazepam mix, just to see if this allows me to reduce my medication any further. If yes, well, we'll cross that bridge when we come to it

[notnowdad]

A possible explanation could be that increased thyroid metabolism is causing the body to divert available iron to that purpose. I believe RLS occurs when available iron is not adequately distributed to needed locations in the body on a daily basis.

You might look at “The Thyroid Reset Diet” by Alan Christianson, NMD, and “Thyroid Power” by Richard L. Shames, MD, and Karilee Halo Shames, RN, PhD. It has been a while since I read his book, but I’m pretty sure that Christianson advocates severely limiting iodine intake for thyroid patients, even the hypothyroid ones. The Shames state that, if the thyroid patient is susceptible to an autoimmune response, then excess iodine can, over time, cause the gland to become “inflamed and dysfunctional”.

Good luck to you. Jim

[Frunobulax]

A possible explanation could be that increased thyroid metabolism is causing the body to divert available iron to that purpose. I believe RLS occurs when available iron is not adequately distributed to needed locations in the body on a daily basis.

You might look at “The Thyroid Reset Diet” by Alan Christianson, NMD, and “Thyroid Power” by Richard L. Shames, MD, and Karilee Halo Shames, RN, PhD. It has been a while since I read his book, but I’m pretty sure that Christianson advocates severely limiting iodine intake for thyroid patients, even the hypothyroid ones. The Shames state that, if the thyroid patient is susceptible to an autoimmune response, then excess iodine can, over time, cause the gland to become “inflamed and dysfunctional”.

My opinion on that has not changed See viewtopic.php?p=106705#p106705 There is a quote from Thomas Peter Cleave that I like a lot: "For a modern disease to be related to an old fashioned food is one of the most ludicrous things I have ever heard in my life." Evidence points to the fact that our predecessors got a lot more iodine in their diet. So it seems unlikely that iodine is the culprit. Or, let's say, the burden of proof clearly lays on the people who claim otherwise.

Of course, once we have wrecked our body sufficiently (inducing an autoimmune condition, for example) then all bets are off -- stuff may suddenly become dangerous that is safe for the rest of the population. Again, my thyroid is as healthy as it can be according to every diagnostic tool that we have in the standard medicine, and so far iodine has worked great for me -- why would I want to minimize it?

[Frunobulax]

Some update. My last TSH came back at 3.6, which is close to hypothyroidism (and quite a jump from the .5 to .8 which was my usual range). Still taking about 25mg iodine a day, my RLS has reverted back to where it was before I started the iodine. (Well controlled with 20mg Oxycodone, but I can't go lower.)

My working conjecture is that I am and was hypo after all (all the symptoms were there for some years), but for some reason my body wasn't able to manufacture TSH and the iodine has fixed that. Now I started with some thyroxine, let's see how that goes.

Some interesting changes though that may or may not be related: Seems like I'm now very sensitive to alcohol (I did enjoy 1-2 glasses of wine maybe once or twice a week) and sugar (which is a no-no in my keto diet anyway, but I sometimes relapse), either of those almost guarantee breakthrough symptoms. But then, it's perhaps for the best as neither is healthy

Another side note: Fluoride is supposed to hamper thyroid function. I haven't used salt with fluoride for some years, water doesn't contain fluoride over here (and I use a filter, always) but I did use fluoridized toothpaste until this spring. Just bringing it up because fluoride came up in this thread viewtopic.php?p=107902#p107902.