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in reply to: Herbs and Graves, my experience #1181858

Kimberly,
yes, I agree with you! I looked up selenium for someone else, gave them this reference. Informative. Am sure you have seen it.
When I had TED, I asked about it. My docs said, “no evidence, but whatever floats your boat, as long as you don’t take any more than 200mcg.” I take so many darn meds already, that i decided to not do it.
Shirley

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in reply to: Herbs and Graves, my experience #1181856

Yes, as Kimberly said, the selenium study was done a selenium deficient part of the world. So the results, at this time, cannot be used as a data point for treatment in this country.

Gotta say that excess iodine supplements for Graves’ and TED can be super dangerous. I would think if this question were brought to a naturopath, homeopathic MD, or providers in allopathic medicine (regular, traditional medicine) the response would be the same.
Shirley

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in reply to: Herbs and Graves, my experience #1181853

Hi nbark,
I totally get it! Good summary.
Shirley

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in reply to: Herbs and Graves, my experience #1181851

Yep. Good conversation,good points. I’d give serious consideration to the conversations by npatterson and Kimberly. AND, IOP, or increased ocular pressure, or “eye pressure” is a different subject, and a clinical symptom and diagnostic sign of glaucoma. I do hope you continue to have your IOP tested now and then. Unrelated to Graves’. Important to know.

Regarding supplements. Herbs ARE the same thing as medicines and drugs, but in the USA, they are products sold as dietary supplements. That means there is no oversight or quality control at all. So the components of the pills may vary from bottle to bottle, company to company. The companies making them are not required to prove to the FDA, or anyone else, that they are safe or effective, as long as they do not claim the supplements that they are safe, effective, can prevent, treat or cure any specific disease. So less is known about them ,their interactions with other drugs.

I am super happy that you feel well now. hope it continues forever!
Shirley

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in reply to: Does anyone else have experience with 10 radiation treatments #1181817

This is an area where there is no consensus about this issue. Some docs believe in it in certain situations, some actively do not recommend it. My doc did not recommend it. I took prednisone to relieve the pressure on my optic nerve, until I could have an OD.

It is a tough decision. Probably no definitive answer at all. Many times, whether it is recommended or not recommended, depends on where the doc trained.
I am not current on the recent studies, and/or if there are any.
I wish you the best with your decision.
Shirley

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in reply to: I am a guy with TED. What is MMJ? #1181845

I didn’t know that, either! Guess I should have, since it is now legal in Washington State. I saw that on storefronts, but did not realize it was amn “MMJ”store!
I think all Kimberly said, is certainly valid and worth considering. Any action that might reduce the chance or severity of TED (not to mention the other negative effects of smoking) is worth considering.
Shirley

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in reply to: Not Sweating while working out? #1181860

No idea. I don’t sweat much, but when I lived in the Midwest, in the humid summers, I sure did. Of interest, there is an article in the NYT today about that topic. I think it is in the Health Section.
Shirley

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in reply to: PTU induced anca positive vasculitis #1181842

wombat,
I m so very sorry this happened to you. What a terrible and life changing experience.
I have not had your same experience, but most definitely have had disastrous experience of my own with missed diagnoses, and defensive and unapologetic physicians.

So glad you have has RAI, and feel good now. That’s the important thing.

I am a long way from PTU and methimazole now, but my understanding is that methimazole is the preferred ATD except for a period of time during pregnancy.
Did you ever hear that? Perhaps there are many people on PTU, and I just don’t know about it.

Shirley

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in reply to: Howdy – Long time no post. TT sked’d for 1/3/14. #1181838

Hi, fellow Midwesterner! (I’m an Iowa City native.) YAY! So glad you found a wonderful endo, and equally happy (and relieved) that you have a TT scheduled for the very near future in January. Fast growing objects that compress your trachea and esophagus are NOT our friends.

Good that you feel relaxed about the TT. Every reason to feel good about it. There are so many very good, and fairly recent posts of TT experiences on the forum. Hope you find a few of them. Alexis comes to my mind right away, but there are others, too.

Re Nature-throid, I am not a good resource, though I think a few posters do take it. I take Synthroid, and all has been fine for me. Perhaps if you begin a new post, simply mentioning Nature-thyrold in the title of the post, you will hear from others who do take it.

Again, so so glad you have a great endo. People are always looking for that right mix of knowledge, compassion and active listening.
Do continue to write to let everyone know how you are doing.
Incidentally, I did not have any hyPO feelings or experiences after TT.
Shirley

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in reply to: newly diagnosed #1181834

Just a few comments right now, more later.
Kimberly gave you a good reference to read.

There are some very good conversations on this forum about treatment, and wanting to get pregnant asap.

Generally, because of the time it takes, RAI is the choice that takes a lot, lot longer, before you can plan to conceive. I think if you use the search engine, you will find conversations about this.

Re TT. I am a person who NEVER wins a bet, but the one I consistently win, is challenging someone to “find” my thyroidectomy incision. They can’t do it!
If I were technologically capable, I’d send a photo of it.
Whatever worry you have, is a REAL worry to you, but I am suggesting that this is pretty much a non-issue. Maybe you can find more comments from people.
Shirley

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in reply to: bulging eye and euthyroid #1181830

I am assuming when you say “at the time of your diagnosis,” you mean for TED (thyroid eye disease?) Not Graves’. They really are two different subjects. Pretty sure you know that.

If you had a diagnosis of TED, you probably have learned from this site, and hopefully, some doc, that TED has a time line all of its’ own, the “hot,” or active phase, when it is NOT the time to do any corrective surgery, and the
“cold,” or inactive period.

Generally and specifically, there is a sequence for any surgical procedures, and there is logic to the sequence. If an eye is bulging, the other words for that are exopthalmus, and prophetic, (which means, basically, bulging out out the eye socket. So, sorry to say, that eyelid surgery, as you have had a couple of times, does not work very well, cause the eye is still bulging out. BUt, from what you have written, I am thinking that you chose those options, rather than having an orbital decompression, to make room for the eye to go back to a normal position??

Since you have been in the cold stage quite a while, I think it would be very helpful for the surgeon to order an orbital CT of that eye, then you have a really good picture of what is pushing the eye out. Usually it is larger eye(swollen, or fibrosed from the active phase of TED) muscles, and increased orbital fat. You can ask, and you already have two opinions, but I think the orbital CT would give a lot more information. You don’t need an MRI. I would not expect any improvement in swelling and bulging at this time, but if you see the improvement, and don’t want the surgery, I guess you are deciding to go with the wait and see..surgeon?

I dont’ have much to say about wheat and corn related to your eyes. If you see the relationship, then, of course, avoid them as you are probably doing.
But the physiology of fibroses muscles and orbital fat won’t change cause of diet, I don’t believe, so this is another question for your doc!
Best wishes….Shirley

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in reply to: Blepharoplasty/decompressiom #1181773

Of course, agree with gatorgirly. NOT an office procedure. I had a general anesthesia. There may be a misunderstanding, or you should run from him.

The order that others have mentioned is absolutely the way it should happen.

And…being a member of ASOPRS does not mean much to me. I know all the docs on it in my area. And I was a patient of one of them, my bad fortune. Some day, I will find out what it means to belong, other than being a reconstructive surgeon, and paying some dues. From that point on, it is a crap shoot, like with any profession.

I am “just” another patient here, but with a “rich”and extensive history with TEd.
Shirley

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in reply to: Maximum amount of time you can be on meds? #1181761

brondack,
bravo to you.
That is the best summary, including what the Mass General endo doc said about compliance with meds for taking ATD’s over the long haul. As mentioned in the past by Kimberly and other facilitators, the issue of liver problems generally occurs when initially beginning an ATD.
Regarding labs, we need to continue to have them now and then., regardless of which treatment we select.
Shirley

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in reply to: Has anyone heard of this? #1181793

HI ALEX
It is not clear to me what treatment you have had for Graves’.
I’d like to leave the uptake results for a minute, and ask other questions, make a few comments. And, of course, I am not a professional, just another Graves’ patient. But we all do learn some things along the way, and it is good to share and think together.
Questions
1. When diagnosed, and how were you initially treated? Did you have antithyroid drugs )probably methimazole?) Were you going to an endocrinologist? What was the plan? Did you have blood work done while on ATD if you were? And, after the first step of treatment, the ATD, #2 addresses the subsequent choices.

2. Did you stay on ATDs or have RAI or thyroidectomy? What is the reason for the follow up of the RAI uptakes? What has been your treatment?

3. With the cardiac symptoms you have, I do really think you should be seeing a cardiologist, 200 BPM is dangerous. But it is not a bit typical to take antihistamines for a cardiac condition. The long QT may be related to untreated hyperthyroidism.

4. All your symptoms suggest hyperthyroidism, untreated, to me. What drugs are you taking?

5. I am not sure why they continue to do RAI uptakes. THat is not a treatment at all, just a diagnostic tool. Much better to treat YOU with the three Graves’ choices. I would want you and any doc to focus on your symptoms, and get you in a safer place than you are now, doing the appropriate labs along with ATD’s (thyroid labs, liver function and white blood cell count.

6 You are definitely sick now. If you went to any ER with a heart rate of 200, they would not treat you with an antihistamine. Everything about your health screams untreated Graves’.
I appreciate your dilemma with money. Always a problem. Do you have any insurance at all? Will it change in January? Are you exploring the Affordable Health care act not that it is working better? I am sure that some of what I wrote is the result of not knowing your Graves’ history at all, so look forward to hearing it. And..if your heart rate stays at that high rate, get to an ER, I’d think.
Shirley

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in reply to: Mullerectomy gone wrong? #1181749

Of course that is distressing. I had the same procedure twice. Pretty easy to correct, in my experience. You are right that it might be a bit better in another week. Be ready to ask your questions and express your worry about this when you see the surgeon.
Shirley

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