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Discussion Starter · #1 ·
Hi, I'm new and have questions. I went to my doc because I've been having terrible feet/leg cramps and neuropathy in my feet. During our discussion, I mentioned that I got very little iodine in my diet because I don't use iodized salt or eat bread products that are fortified. He said I should look at taking an iodine supplement, so I got a bottle Ioderol 12.5 on my way home and started taking it. Immediately, I noticed a lifting of brain fog and didn't have anymore cramping/neuropathy. He did bloodwork and, after 2 weeks with no phone call, I called and he said my thyroid is off. I have not yet seen the numbers. He put my on levothyroxin.25.5 mcg/day. OMG!! the cramping and pain took off through the moon! My muscles cramped all the way up my back. I don't see him again until the end of July. What should I do and what questions should I ask him? I had stopped the ioderol when I started levo but started it again when the cramping started. The cramping is much better now, but I have so much pain remaining from the cramping. I need to know what I should do and ask, maybe go see a specalist? I'm near Huntsville, AL, if anyone can recommend a doc for this. Thanks.
 

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Can you clarify that you have your thyroid? What thyroid labs did your doc run? Any antibody testing? I'm curious as low/no iodine intake can impact thyroid function much like hashimotos.
 

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Discussion Starter · #3 ·
Yes, I have my thyroid. I also have a family history of thyroid disease, mom and sister had theirs removed. It is my understanding that iodine is taken up by the thyroid and, when it doesn't get enough, it no longer functions properly. I have not idea in what way. I also don't know what thyroid test he ran, just took lots of blood and forgot to call me about it, when I called him he said it was 'off'-not high or low, just off.

Initially, I had gone to him because of leg and feet cramping that was horrendous. Then, in the discussion, I asked if thyroid problems could cause this, he said yes let's test, and here we are. I am still taking the levothyroxin but am also taking the ioderol and my cramping has virtually stopped.

This is my problem: I don't know what to ask. I read that levothyroxine is not the best for thyroid problems and he's my internal medicine doc. Should I insist on a specialist? What tests should I ask for and, then, what results should I be taking action on. I'm clueless. Also, I can read and comprehend, so I'm willing to read articles if you can suggest some for me to educate myself. Thanks/
 

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Couple ideas. Consider getting TPO and TG antibody tests done. This will check to see if you have Hashimoto's disease. Iodine deficiency can cause hypothyroidism on it's own, that is possibly why your thyroid is "off". Hashimotos can also cause thyroid levels to be off (it destroys the thyroid little by little over time). Hashimotos is 90% the cause of hypothryoidism in the United States. But if you really were avoiding iodine that much you could have caused an issue.

High doses of iodine can trigger hashimotos, I don't think it's too common but it can happen. 12.5 mg is a pretty high dose of iodine, but if you were deficient, maybe that was good to take for a short time. The recommended daily amount is 150 micrograms and you were taking 12.5 milligrams. That's a very large difference. I think a daily amount should probably stay under 1 milligram for a regular basis. Another more natural way is to eat some seaweed. I suppose more research is needed on the Iodine supplementation, but I do know high doses can trigger hashimotos and then hypothyroidism in some people. I personally side on caution with supplements and thus I usually stay on the lower side. Research I saw suggested staying under 1 milligram. This is a functional doctor's take on Iodine...she mostly deals with hashimotos patients. A regular doctor won't likely recommend her, but I think she does OK for the most part: The Effect of Iodine on Hashimoto’s - Dr. Izabella Wentz

Whether to use conventional doctors or alternative doctors with hashimotos and hypothyroidism is a tough call. I personally don't think either one is perfect. Just be very careful on the alternative side as they can sometimes more likely be scams. But conventional doctors are not very good from my experience. Try to find a good doctor using a site such as this one: Patient-Recommended Thyroid Doctors (U.S.)

If you were deficient in Iodine and that's why you had hypothyroidism, you should see those thyroid tests become more normal but it can take a bit of time. So depends on how fast they were testing you. Certainly doesn't hurt to see someone else.

I agree the generic Levothyroxine isn't the best way to go if you end up needing to take it. Brand name Synthroid or Tirosint is better for most people. Personally I think they may have jumped the gun with you. For instance, if you don't have hashimotos and all you had was iodine deficiency, you would just have to take enough Iodine and monitor your thyroid over time. However, if you have hashimotos (or both), it could be a bit trickier.

Tests to ask for are as follows:
TSH
FT4
FT3
TPO Antibodies
TG Antibodies

Also consider Vitamin D tests (if Hashimotos, we are often deficient)
Iron tests and Ferritin (All 4 Iron tests)
B12
 

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Discussion Starter · #5 ·
Thanks. My bit d level was pretty good. Iron I don’t know and I do take B12. I think I’ll take the Levi until my next appointment in 2 weeks. The iodine is 5 mg iodine and 7.5 potassium iodide. When I take it the leg cramps stop and that was my primary complaint. Thanks for the input.
 

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Often you can get a login to a My Chart website for your local doctor's office. Then you can see all the test results, contact your doctor, etc. I believe most doctors across the country participate in this. Especially since the rural doctor offices I went to also had them. I think it's very helpful.
 

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Discussion Starter · #7 ·
Thanks. My bit d level was pretty good. Iron I don’t know and I do take B12. I think I’ll take the Levi until my next appointment in 2 weeks. The iodine is 5 mg iodine and 7.5 potassium iodide. When I take it the leg cramps stop and that was my primary complaint. Thanks for the input.
Often you can get a login to a My Chart website for your local doctor's office. Then you can see all the test results, contact your doctor, etc. I believe most doctors across the country participate in this. Especially since the rural doctor offices I went to also had them. I think it's very helpful.
I bet he does. Just never thought about it. Will check tomorrow. Thanks
 
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