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Old 10-24-2012, 05:52 AM   #1
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Hashimoto's or Iodine deficiency?

Hello, Here is our situation: My daughter turned 15 in August. We have pictures of her with a nice long skinny neck you can see the cartilage in it. All of a sudden, just over a period of a few weeks she started feeling horrible, gained 15 pounds, in under 2 weeks and Friday, I thought I noticed her Thyroid was swollen, well by Sunday it looked like she swallowed a baseball.

Backstory: She is following a Gluten Free diet, (we both have Celiac) and I cook 90% (if not more) of her meals. We hardly have processed foods, fast foods, etc. I accidentally got the Non-iodized Salt, on about Sept 12th, 2012. The last two weeks (About 10/12)she has gone without her multivitamins which have 150 MCG of Iodine in them. I think you get where I am going with this. Right?

So back to the present. Her TSH came back at 65 and her T4 was .20 (I think he said it was hard to hear him correctly on the phone) The thyroid antibodies and the urine to check the Iodine are not back yet. The doctors are refusing to consider Iodine Deficiency as a possible answer to this, because it is ‘rare in the USA.’ Even though I told them the same back story. They just want to automatically assume it's Hashi's just because I have that too. But I didn't get it til she was born. I know she is genetically predisposed to it, but does this mean it is or the lack of Iodine prompted it to start to shutdown? Can we stop it and reverse it before it's too late?

Okay, now for my questions:
If it is Iodine related, can we reverse it with supplemental Iodine? Or have we damaged the Thyroid too much?

If we put her on Synthroid (50mcg), that the Dr. wants, will that make her Thyroid completely stop working and become dependent on the meds, if this is purely an Iodine Deficiency?

Or if we put her on the meds, for a few days/weeks, will that ‘kickstart’ her thyroid and help it get started back up once we reintroduce the supplemental Iodine, then wean her back off the meds, but keep the Iodine?

How long would it take to become Iodine deficient and then how long before it affects your thyroid with these type of Thyroid levels? Does anyone have a clue? I cannot find anything in my research.

IF her antibody test comes back positive does that mean she has Hashimoto's or can it still be Iodine?

Am I onto something or am I just another crazy mother?
Thanks so much for helping us figure this out. I do not want to HAVE to put her on meds if this is purely an Iodine Deficiency.

Thanks so much for any help/ideas you can give us.

 
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Old 10-24-2012, 09:57 AM   #2
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Re: Hashimoto's or Iodine deficiency?

I can understand your wanting this to be iodine deficiency, because that would be so simple to fix. When I first suspected my thyroid had gone wonky, that's what I had assumed, too. I hadn't used iodized salt for years and years before my diagnosis. It had to be that, right?

Then I learned that iodine deficiency is rare in the US, and that autoimmune thyroiditis is the most common cause of hypothyroidism. AI diseases have a genetic predisposition. They were already in my family, as they are in yours. It's very unlikely, but of course not impossible, that your daughter's hypoT is iodine related. People with AI diseases are predisposed to having others. You have Hashi's; she has celiac. She is predisposed to having another AI disease such as Hashi's.

Testing positive for TPO and/or Tg antibodies indicates Hashi's to be the cause. Testing negative for them isn't conclusive, however. There's an inherent false-negative error rate of up to 20%. You already know you have Hashi's. If she has hypothyroidism, you probably can assume it's due to Hashi's even if the Ab tests are negative.

The sudden onset of her symptoms also seems unlikely to be iodine driven. It even seems unlikely to be due to Hashimoto's, actually. Have subacute (De Quervain's) thyroiditis and silent (painless) thyroiditis been ruled out? Those would have more sudden onset of symptoms than Hashi's or iodine deficiency.

If it turns out the direct cause of her hypoT is found and can be reversed, she would just taper off the thyroid hormone and her gland would start working again. I wish that old saw about thyroid "dependency" would wither and die. If a person needs more thyroid hormone than her gland can make, why should there be a stigma about taking it in pill form? Diabetics aren't stigmatized when they need insulin, after all. It's the same thing.

Hoping she'll feel better very soon!
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Last edited by midwest1; 10-24-2012 at 10:00 AM.

 
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Old 10-24-2012, 10:03 AM   #3
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Re: Hashimoto's or Iodine deficiency?

Thank you, Midwest1. He just jumped to hashi's, the antibodies and iodine levels are not back yet. Also, I understand the diet thing in the US. But how does that work if I have been cooking all her meals with non-iodized salt?

So, even if she has the propensity for hashi's because of me, if she starts synthroid she can stop it if we get a handle on it. I know she will have full blown hashi's one day, but can't we hold if off for as long as possible?

 
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Old 10-24-2012, 06:23 PM   #4
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Re: Hashimoto's or Iodine deficiency?

Her peds doctor called this evening and told me that her antithyroid perioxidase was elevated slightly, at 28 with a reference range of 0-26. so ever so slightly up. I don't know if this means anything or not.

So he says she does have Hashimoto's. I told him that since Sunday and her neck being so swollen, each day since then the swelling as decreased and today it is barely noticeable.

At first he told me that was normal since she started Thyroid meds, then I told him, no I hadn't gotten them yet, the pharmacy hasn't called and I am going there tomorrow for my meds.

This perplexed him as to why without help her swelling would go down on it's own, the only thing different? I had gotten iodized salt and we had started back on that. Soooo...who knows? We hung up..I cried like a baby for 'blessing' my child with absolutely every bad health problem I have.

I was still crying when he called me back and asked me to bring her in tomorrow so he could see her neck again and he wanted to re-draw the labs again and see if there are any changes.

Is this all too weird for anyone? Oh...we are still waiting on the urine.

 
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Old 10-24-2012, 10:38 PM   #5
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Re: Hashimoto's or Iodine deficiency?

We "bless" our children with *** kinds of things, both good and bad. Try not to feel guilty about what has probably been in your genetic line for generations. Do you yourself actu***y find that taking one little pill a day is such a burden? I never have felt that, for the normality it has restored to my life.

You might not want to push the iodine issue now that you know it's Hashi's. Iodine usu***y exacerbates the situation instead of improving it. It often will worsen symptoms and even cause goiter where none existed previously. I would not advise extra iodine at this point, especi***y if she eats dairy, strawberries, and eggs. She can get her iodine from those natur***y without the risk of aggravating the Hashi's with supplemental iodine in salt.

You're worrying about the Hashi's itself for little reason. Hashi's doesn't cause symptoms; the resulting hypothyroidism from the antibody damage causes the symptoms. Synthroid replaces the missing hormone the damaged gland can't make. So, in that sense, Synthroid doesn't "stop" the Hashi's, which can't be stopped. It treats the hypoT. Even if she didn't need it now, she would need it eventu***y.

[The auto-editor seems to be a little wonky this evening. The asterisks where they occur are replacing the letters a-l-l ... ???]
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Last edited by midwest1; 10-24-2012 at 10:42 PM.

 
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Old 10-25-2012, 04:11 AM   #6
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Re: Hashimoto's or Iodine deficiency?

Thank you. I know I didn't do this to her. But I also know what this has done to me and my body and how I suffer now, and I feel like I've just sentenced her to a life worse than mine. Being she got it 18 years before me.

From what I've read so far on Hashi's (which I didn't know I actu***y had til last year, I thought I just had hypoT.) Because I never got the wild swings from hyper to hypo, it just up and died after I had her. Last year when they were trying to figure out why both my shoulders were not working, that's when they sent me to the Endocrine doc, and he did an ultrasound/labs of it and couldn't find it....he actu***y thought for a second he had removed it already. That's when he told me I had Hashi's and with Hashi's you can get *** these body things too. Which I have terribly.

For my DD, I think she will have those swings, in retrospect we were talking and the last few months she was complaining of heart racing and feeling anxious. HyperT maybe? Then she crashed and got the goiter? I guess it makes sense. But how will putting her on Snythroid help when/if she swings back to hyper? Which she may be doing now? With the goiter going away almost as fast as it got here. I think that is why he wants to run the labs again.

Yes, I have read the controversial things on Iodine. It sounds like from what I get, they believe that most hashi's are deficient, but it's so tricky to dose them without throwing them off that they just tell everyone not to use it. Maybe the peds endocrine can help with that, I guess? Which we still haven't had them c*** us an appointment time.

So, since hashi's is a disease and not an actual thyroid disorder, or so they are saying now. What vitamins and supplements can she/us be on? are there specific things we NEED to take? Or for her, things that will keep her thyroid more balanced and not swing so drastic***y?

Thank you so much.

 
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Old 10-25-2012, 11:31 AM   #7
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Re: Hashimoto's or Iodine deficiency?

If your hypoT isn't well-controlled now, you should be researching for yourself as much as your daughter. You wouldn't be suffering so if you were getting optimal treatment. There are many, many ways to approach thyroid treatment. If the one you're doing isn't working, it's time to move on to something with potential to work completely.

Synthroid isn't the only thyroid med out there. It happens to be the one I was first started on, but it ultimately proved "too strong" for me. I then switched to Armour, which had a far different and beneficial effect.

Hashi swings are rough, but they can sometimes be eliminated by starting thyroid replacement very cautiously and gradually. The thyroid feedback loop eventually will turn off once there is adequate circulating exogenous hormone in the bloodstream. It isn't an instant fix, but it's worth doing for the payback afterward.

It's important for you to understand that TSH isn't that important, despite what any MD tells you. Her FT4 of .2 is much more indicative of the straits she's in. It has to come up, so she needs to be taking that prescription ASAP. (For future reference, always include the lab range for each test result. I'm assuming that this FT4 range is similar to the most commonly used one in the US, which is .8 - 1.8. ... But they can vary from lab to lab.)

The most well-known thyroid patient advocate/author in the US has written that Hashi's patients have commonly reported that iodine supplementation caused their Hashi's symptoms to flare, making them feel much worse on it than off. The author herself said it did the same to her. There are even studies that found excess iodine to be a contributing factor in the development of autoimmune thyroid disease. Good enough reasons to abandon the idea, JMHO.

As for vitamins/supplements that will help... It's all mostly anecdotal.
Selenium has been proven to sometimes reduce TPO antibodies by up to 40%. I'm guessing that has the potential to reduce the degree of "swinging" by reducing inflammation of the gland.

Hypothyroidism is known to reduce absorption of nutrients. My own MD thinks a good B complex is vital. Also vitamin D levels should be monitored. Ferritin has something to do with thyroid hormone transport, so a low ferritin level should be raised with supplemental iron; but it should be taken at least 6 hours apart from Synthroid or other thyroid hormone to avoid interaction.
But the thing that will do your DD the most good is raising her T4/T3 levels. The other things are adjuncts to that.

Maybe you'd like to post a thread including your latest lab results, dosage, etc.... ? Sounds like you need some help of your own. I can tell you... I was diagnosed with Hashi's in early 2003. After a rough 2003 with an MD who didn't serve me well and finding Dr. Right in late '03, I've been completely "normal" since late 2004. You probably have other options in treatment you don't know about.
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Old 10-25-2012, 01:14 PM   #8
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Re: Hashimoto's or Iodine deficiency?

Thank you. I am fine. My levels have all been normal, and I have been on 0.125mcg for about 14 years now. Once they got it stable I have never changed. That is why I was kind of shocked to find out I had Hash's, since I have never had swings. But my body is a mess. But all my vitamin levels and everything are all normal. It's mostly my joints that bother me the most, my muscles always ache, but I can live with that, it's my joints and range of motion that is bothersome.

But, this isn't about me, I just would like to prevent this train wreck on my daughter's body. I think my damage is done. Besides we are not rich people and she's more important to choose.

I wish I could post the reference ranges, all of this by telephone and he only told me the ref range for antithyroid perioxidase (0-26) and she was 28. Urine came back today and they said that was 'normal.'

I am already giving her multivits, calcium w/D, Vit B, and we picked up the selenium when we got her synthroid this morning.

Time will tell at this point, I guess. Her endocrine appointment is in 3 weeks, maybe we'll see a vast improvement. I hope so.

Thank you again.

 
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