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Sister has no choice but possible thyroid storm

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Old 01-09-2007, 08:11 PM   #1
Meggie Doll
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Unhappy Sister has no choice but possible thyroid storm

My sister is 32 with 3 sm children. She has been having problems with her thyroid since Sept. Dr says she has hyperthyroid. She's taken 2 diff kinds of anti-thyroid medicine to return to thyroid to normal and is allergic to both meds. Dr says she has 2 other choices, radio active iodine or removal of the thyroid. He said the iodine won't work because of some blood test that reveals her thyroid not being able to absorb. The Dr. says she must have the surgery and can not live much longer with this much stress on her heart and high elevated blood pressures. Doc also says the surgery will be very dangerous because they cannot regulate the thyroid before the surgery. She then went to visit with a surgeon who told her if he operated on her she would go into thyroid storm and die. So she's told that she MUST have the surgery but CAN'T. Anyone have any suggestions. Is there only 2 medicines in the whole world that can regulate the thyroid? Can anyone survive a thyroid storm? Hmmm, I don't know what else to ask, anyone, anything, PLEASE.

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Old 01-09-2007, 10:50 PM   #2
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Re: Sister has no choice but possible tyroid storm

There are lots of natural products that are used for thyroid problems. Do some research on it. I think your sister needs to get a second opinion from a doctor outside of the current clinic she's going to. There are some pretty serious risks for whatever treatment she tries so you want to make sure you get as much info as possible. Plus you want to make sure that she's actually getting the right treatment.

Old 01-10-2007, 04:04 AM   #3
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Re: Sister has no choice but possible tyroid storm

has she got graves or secoundry hyperthyroidism??? as this makes ahuge difference on the way forward?????
some people dont like the rai???? havent had it myself??? good luck hope you can reply love from katpurs

Old 01-10-2007, 05:16 AM   #4
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Re: Sister has no choice but possible tyroid storm

Your sister needs to find a surgeon that will work with an endocronologist to figure out what's best for her.

I see you're in maryland...has she been to Johns Hopkins? I think they have some top thyroid surgeons there....she definitely needs more opinions, and some good doctors will help her figure this out.

Old 01-10-2007, 09:16 AM   #5
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Re: Sister has no choice but possible tyroid storm

Hi Meggie,

There are all sorts of options out there. I would encourage your sis to seek an expert third opinion.

Many ways to suppress thyroid prior to surgery. The are a couple meds that right now are commonly prescribed, but beyond those there are other options. Sometimes a combo of meds is needed.

The biggest concern is that hyperthyroid IS a very serious. While I am normally in favor of natural, do-it-yourself solutions, I would caution you to not waste time with that in this situation. Thyroid storm is very dangerous, and it does have a high fatality rate if left untreated.

Please encourage your sis to get on with finding a specialist who will be able to help her.

Best wishes.

Old 01-10-2007, 09:32 AM   #6
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Re: Sister has no choice but possible tyroid storm

I'm not knowledgable enough to suggest anything. Just want you and your sister to know I'll be praying for you both.

I will say that she should have a loved one to help her make decisions and to go with her to all her doctor consultations as an extra set of ears, if at all possible. In her hyperthyroid state, she likely isn't able to think things through in a rational manner, and she may not even catch all that's being said to her. Hyper affects everything... the mental processes as much as the heart.
Please tell her we care and hope for the best for her.

Old 01-10-2007, 11:32 AM   #7
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Re: Sister has no choice but possible tyroid storm

There are several alternative methods to prepare a hyperthyroid patient for surgery when they are allergic to anti-thyroidd meds. Most of them use beta blocker agents alone or combined with other medications. In the right hands, it is almost as safe as preparation using traditional methods.

I do hope your sister is currently on beta blockers. If there is no contraindication to their use, they are very effective in controlling many of the symptoms of hyperthyroidism. Often the best one in a situation such as this is Inderal (propranolol) because it can also block the conversion of T4 to T3 which is the more potent form of thyroid hormone. The other advantage is that at the right dose, they are very very effective in lowering the blood pressure and pulse rate to a level that greatly reduces the risk of cardiac complications.

You are located in an area that has many fine doctors. If the one she is seeing does not appear to be able to help her, you should seek another opinion.

Best of luck,

Old 01-10-2007, 02:52 PM   #8
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Re: Sister has no choice but possible tyroid storm

Pursie, how are you? I fianlly seen you post, alot of us are worried about you!

Love, Monkey

Old 01-10-2007, 08:03 PM   #9
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Re: Sister has no choice but possible tyroid storm

I've had Graves disease/hyperthyroidism for almost 8 years now...and because of that I have become quite cynical of what we hear from some doctors.

I first question whether your sister was truly "allergic" to the anti-thyroid meds she tried or whether she was overdosed on the meds and developed side effects due to the overdose. (Overdosing is quite common - it'a happened to me twice) Some docs freak when they see a hyperthyroid patient (we are a rare breed - doc's see WAY more HYPOthyroid folks). When the docs freak they tend to prescribe large doses of anti-thyroid meds thinking that they are doing the right thing....unfortunately large doses tend to give patients side effects...and smaller doses will be just as effective at bringing down thyroid levels, it just takes a bit longer.

Second, the comment that they cannot do RAI because her thyroid would not absorb the radiation makes no sense to me.....hyperthyroid thyroid glands rapidly absorb RAI....HYPOthyroid glands however do not absorb the that confuses me.

Third, it's quite common for a patient to be prepped for thyroid surgery by giving them SSKI - strong solution iodine. This solution lowers thyroid hormone leves and also makes the gland less vascular so the surgery is not so bloody.

If the CAUSE of her hyperthyroidism is Graves disease then there is NO WAY I would ever do RAI (radioactive iodine).

Can you explain to us exactly what her allergic symptoms were? And specifically what her thyroid levels are...what lab tests have they run and what her levels are - along with the labs normal ranges.
Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

Old 01-12-2007, 06:36 AM   #10
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Re: Sister has no choice but possible tyroid storm


I am bumping this thread back to the beginning because it looks to have been repated. K9Mom has given you good advice here and suggestions.

DX. Toxic Multinodular Goiter (now growing rapidly) & Hyperthyroid from autoimmune Graves Disease

Old 01-12-2007, 12:38 PM   #11
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Re: Sister has no choice but possible tyroid storm

I am going to ditto K9Mom. Your sister may not necessarily be having an allergic reaction. However, even if she is, desensitazation can be done. I work in an oncology practice and we have patients who have had allergic reactions to chemotherapy agents. Typically they are administered desensitzation meds such as Benadryl, Solu-Cortef, etc. and voila, no allergic reaction.

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