[Buttamama28]

#1018308

Hi Everyone,

This has been a burning question in my mind. I haven’t had the luxury of seeing an actually Endo in the last couple of years, and I usually get a blank stare from the internal medicine doctors.

I have read a little about the connection with iodine and our thyroid. So is my Graves’ the reason I have a severe allergy to iodine, or could my progressive allergy to iodine have caused my Graves’? Because we cook with iodized salt, am I causing myself harm, because of my allergy? If anyone has had even a remotely close conversation with their Endo, please let me know. Or where could I find out? I been looking online but maybe I am not putting together the right words in the search.

Thanks,
Buttamama28

[Harpy]

#1063895

Try Google "autoimmune thyroid iodine toxicity", this should come up with a couple of hits that you can get some info from.
Recent research has suggested that excessive iodine intake can both agravate and initiate autoimmune thyroid disease, and can also elicit alergic reactions in susceptable people. The indications are that iodine intake may need to be tailored more specifically to different populations depending on their iodine tolerance, for example japanese populations that have a long history of high iodine intake have a much higher tolerance to iodine than inland european populations where iodine intake has been historically low.
So there is an issue with excessive iodine intake, but the difficulty is knowing what your intake should be, if you have or have had a hyperthyroid condition then avoiding excessive iodine intake like iodised salt, seaweed etc. is probably a good idea, but your iodine intake still needs to be adequate for normal function.

[Bobbi]

#1063896

We have to have iodine in order to live. Thyroid hormone, which is necessary for molecular processes at the cell level in the body, REQUIRES iodine. Without sufficient iodine, for example, the nervous system will not develop properly in a baby, and a severe form of mental retardation occurs — called "cretinism."

While excessive iodine intake has been demonstrated to cause temporary thyroid malfunction occasionally (either ramping up hyperthyroidism, or shutting the thyroid cells down temporarily), iodine intake has not been shown to cause Graves.

[Buttamama28]

#1063897

Thanks everyone,

I will look it up and see. My fear is having a not so good reaction if they try to redo my uptake and scan. I had the oblation done in 2004, got really sick; vomiting, headaches, severe abdominal pain, and itching. Not to my surprise- it only worked for about 3 mths. I didn’t know at the time that I had a bad reaction to iodine, until I had to have a cat scan for other reasons- with a nightmare reaction. My legs, feet, and hands felt as though they were engulfed in flames; they had finished the procedure anyhow. I was still burning, throwing up, and having shortness of breath. By the next morning everything that was burning during the scan was swollen to cartoon sizes; for weeks my skin peeled off like I had been set on fire literally! I keep explaining to doctors who want to repeat the procedure that I am scared to death, especially since they don’t do the procedure at the hospital- I am even more mortified at the fact that they ignore my pleas, and assume that I just like being sick and don’t want to try it again.

Buttamama28

[Kimberly]

#1063898

Is there any way you can get hospital records from that previous visit? If not, can you document in detail what your previous reaction was and ask that your memo be placed in your file at the clinic?

If something made you that ill — and you suspect it was iodine — your docs certainly *need* to listen to your concerns.

As for ingesting iodine now, I have also heard the theory that in our Western diet, we might have gone *overboard* in adding iodine to salt, bread, etc. — which could be contributing to higher rates of autoimmune thyroid disorders (including Graves’ and Hashi’s) today. I’ve also heard doctors speculate that there *may* be a connection between food allergies and autoimmunity. However, to my knowlegdge, neither of these theories have been proven.

My doc didn’t give me any advice regarding iodine, other than to make sure that my daily multivitamin did NOT have iodine. I’ve heard of other patients who were advised to cut out *all* foods that are significant sources of iodine, such as dairy and fish. Patients who are in a hypER state are often advised to at least avoid foods/additives with loads of iodine — for example sushi and supplements with kelp. So this is one more thing upon which the docs don’t seem to agree. If you seriously suspect an iodine sensitivitiy, you might consider keeping a food journal to see if you can find a connection between your symptoms and iodine intake.

[snelsen]

#1063899

I think any question you have about iodine and amitriptyline can be easily answered by a pharmacist at the drug store. It is not necessary to have purchased medications there. Just stand in the line, ask to speak to pharmacist. Have your questions ready.

Regarding you and iodine. Based on your post, it seems that you have a true allergy to iodine, based on your last CT. I do not think that you will ever encounter any problems with stating your iodine allergy, should you need a CT again. When you register in radiology, generally you fill out a current information sheet, and there is a place where you are to list allergies.
So you should list iodine. THere are two kinds of CT’s(cat scans.) a CT "with" which means with contrast, which contains iodine, and a CT "without" which doesn’t have the injection of contrast. If you tell them of your iodine allergy, they will not use it, so that should be very simple. I cannot imaging any doctor or health care provider giving you a blank look about that, so I am assuming the blank look you are referring to is for some other subject?

Please check with the pharmacist, but using iodized salt is not relevant to any concern or worry at all. You have seen Kimberly’s answer to that.
I do not know why you are taking amitriptyline. It is a long time standard drug for depression, but so many newer classes of drugs, including a class called "SSRI’S" have appeared, that if you are having side effects that you don’t like from this drug, there are certainly alternatives. All of this is more complicated because of your lack of access to the health care system.
There are some other reasons people have discovered by accident, that amitriptyline has helped. But when you talk to the pharmacist, tell them why it was prescribed for you.
And..if you get medication for one month in a plastic bag with hand written directions, does it mean that you are not able to continue to take anything that was prescribed for more than a month?
I hope you continue to pursue some kind of health care through the programs that exist for people with limited income.

[Buttamama28]

#1063900

Hi,

Usually now when I go to the ER or something they skip the CT scan, because they doctor always says it isn’t as good without the contrast. But, it is almost as though they are trying to make me feel guilty- whatever! The new problem is actually thyroid issues in scanning and so forth. I have had a physician tell me that because of my shown allergy to iodine his only recommendation was removal of my thyroid, and not to try the oblation again. Then he moved out of state… I guess I could try to get my records from there again for my current physician. My new doctor is trying to get me in with an Endo but I haven’t heard anything back. I told her about my reaction to the Amitriptyline, and she said to take 25mg instead of 50mg. I told her I did and it was still the same effect. She told me to try to cut it in half (they are already the size of birth control pills). She wouldn’t give me anything else. I am trying to stay positive..Thanks for everything guys!

Buttamama28

Butta is my son; when he was born he was yellowish so his dad started calling him butta!

[snelsen]

#1063901

Considering that the health care you are getting a little bit fragmented, it sounds like you are getting good advice.
What you doc said about the amitriptyline makes perfect sense, ie. taking 1/2 the dose. It makes sense to do that before changing the drug. I am not sure how many days you have cut the dose in 1/2. This post does not contain what you said about how you felt with the amitriptyline, or (i can’t recall) if you are sure it is this drug. Nor do I think I know for sure why you are taking it. If you feel you cannot take it, then call, leave that message, ask if there needs to be a gradual taper to get off the drug, or if you have already reduced the drug enough to simply stop it. It sounds like you don’t care for how you feel taking this drug. My only other comment, is if you are taking a ton of other stuff, it might be difficult to know what is going on with the other ones.
It is very normal to have to wait for an appointment with an endo, especially a first appointment. I am glad your finances are allowing you to see an endo. If you are hyper, as you have heard from many on this website, it is not good to remain that way.
Since you cannot take ADT’s, since you have an iodine allergy, when you see the endo, probably a good idea to ask for a referral to a surgeon.
I don’t know how much any of this can happen if you are not able to get some financial aid. Have you applied for Basic Health.
That subject has gotten lost in the emails, that was one of your original questions when you wrote.
I wish you the best in your searching.
Shirley

[Harpy]

#1063902

Shirley
I’m not sure what you mean by the iodine allergy and not being able to use ATD’s (MMI & PTU),
From my understanding ATD’s do not contain iodine and would have no bearing on an iodine allergy if there is one.

On another front I did a little more research and the indication is that "Iodine Allergy" is a misnomer in most cases, in very, very rare cases some people will show a reaction (rash etc.) to topical application on the skin but even in these cases ingestion of iodine is usually not an issue, so an actual allergy to consuming iodine is almost non existant.
It appears that what is often termed iodine allergies is actually an allergy to other compounds in seafood or in uptake scans, such as proteins and dyes, they just got associated with iodine incorrectly because of the high iodine content in seafood and the uptake scans.
Iodine can still cause be toxic in very high doses, but that reaction only occurs in megadoses many times in excess of normal daily intake, such as when high doses of potassium iodide is used to block the thyroid, as an adjunct to other treatment therapies.
So as I understand it currently, there is no such thing as an Iodine allergy in terms of consuming iodine,
If anyone has any literature to the contrary, then I would be interested in seeing it as I’m always after new knowledge.

[Bobbi]

#1063903

Thank you, Harpy. That is also what I have been trying to say, as well.

Researchers have also demonstrated (a study at UCSF, if I remember correctly) that even folks who have a demonstrated
"allergy-like" reaction to the contrast agent used in CT scans can tolerate, without reaction, a direct injection of an iodine-containing compound. (It was sodium Iodide — or something like that.) They did this in a study to determine whether or not it was reasonable to even talk about an iodine "allergy."

So, buttamama, your options may not be quite as closed off as you believe. But you need to be able to find a doctor to work with you to determine just what option gives you your best chance of regaining control of your thyroid hormones. I do wish you good luck, and good health soon.

[Ellen_B]

#1063904

Hi All!
First of all I can see allergies to iodine is a very interesting and complicated subject.
I am including a short article (below) written by Douglas S. Ross, M.D., the Co-Director of the Thyroid Associates at Mass General Hospital Boston MA. I am hoping the article will clear up some of the misunderstandings about allergies to iodine or at least fill in some of the gaps. It was originally written in response to a patient’s question, Do people have allergies to different forms of iodine?

“Iodine is an essential mineral required for the synthesis
of thyroid hormone and widely distributed in foods, and
added to iodized salt. Radioiodine is administered as a simple
salt, sodium iodide-131. Patients do not have allergic reactions
to sodium iodide.

Radiocontrast includes many compounds to which iodine has
become organified. A small percentage of patients may have
serious allergic reactions to these compounds. Patients who
cannot have radiocontrast can safely ingest radioiodine.

Many people have allergies to shellfish or fish. The cause of
these allergies is not iodine, but rather several specific muscle
glycoproteins. Patients with shellfish allergies can safely take
radioiodine.”

That being said I can still well understand with your (Buttamama28’s) experience after RAI not wanting to have it repeated. Did the RAI treatments cause the release of some other substance that caused you to be sick?

I do not know what the form of iodine is –that is in (or is put in) salt. In a container of iodized sea salt it mentions potassium iodide. Would that be a form that an individual who is allergic to iodine could be allergic to? I don’t know. According to Ross sodium iodide in the radioiodine is ok.
With all this information I still have more questions. If possible it would be nice to know what form the iodine is in foods. Is it in the form of a salt (iodide) or something else that one can be allergic to?
The quest for more knowledge goes on.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
400 International Drive
Williamsville NY 14221
Toll-free — (877) 643-3123
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org

[Buttamama28]

#1063905

OMG! You guys are awesome! This is why I brag on this site! I am even doing my Capstone final on the relationship between Chronic Illness and Online Support Groups- I wish everyone had something like this.

I am still waiting for the free clinic to hopefully find an Endo for me. So it was something in the CT scan that caused my severe reaction, but it wasn’t the iodine? hmmm, either way that is great to know.

I am also not sure what happened or what triggered what with the radioactive iodine. I just remember taking the pill, going back to my room to start my week of solitude, and within an hour or so (if that) I was sick as a dog! But, it is good to know that it could have been something else associated with the treatment. My fear is that my reaction to whatever the problem was minimized to me associating the oblation to chemo or something, and that wasn’t the case at all. I was ill and alone, and if the procedure won’t be done in a medical setting then I don;t want to take the chance of something happening to me again.

As anyone finds out anything else, please continue to let me know.

Buttamama28

[snelsen]

#1063906

Couple comments.

1. I am not sure how anyone, including physicians, can state absolutely that "patients do not have allergic reactions to sodium iodide." That is such a sweeping, conclusive, absolute statement. This implies he knows this as a fact, and I do not know how he could know this. It also infers that this is true for all people in the future. I have written to Dr. Ross, requesting his rationale for saying this. I have no idea if he will respond. It just seems wrong. How can anyone make a this statement? I am not sure this statement can ever be made, even with numerous randomized studies, with large samples of large populations. He is not an allergist and he is not a pharmacist.

2. Because of buttamamas’s experience, the only safe thing for her to do are the things she has already concluded.

-she had a severe reaction after the scan. She will be careful to report it.
-she should always state this and write this in any medical history, and in any radiology setting.
-the article is not sufficient reference for her to conclude that she does not have an allergy to iodine.
-For her to be safe, she should be sure everyone knows her experience.
-I do appreciate her desire to have scans done in a hospital, although I am not entirely sure that she will be able to achieve this. Indeed, another relevant question is "what KIND of reaction?"

so that is what I think, as a layperson.
Shirley

OF note-It is very important for people to realize that there are several modes of receiving a medication.
Inhalation, absorbtion, oral, intravenous, topical. All of this is a complex topic. A drug that is applied topically, is much different that a drug ingested or given directly IV.

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