[snelsen]

#1181419

Hi and welcome,
you HAVE been having one rough ride!
You have an interesting history, sorry you have been so up and down and feel badly. From what you have said, I am wondering if the following would be helpful for you.
1. Get copies of all your labs since you first had thyroid labs taken.
2. There are some good references here on what the labs mean. On a very basic level, the TSH (thyroid stimulating hormone) is a very small number in the range listed, meaning your thyroid is being stimulated to produce TOO MUCH thyroid hormone.
3. So you know, Graves’ IS hyperthyroidism.
4. This is the way I see your history. You had the weight loss, had more energy, and when you went to the doctor (primary or endo) they did labs, the labs fit with your symptoms, and you began methimazole. Methimazole is an ATD (antithyroid drug) and you were on it to decrease the abnormal amount of thyroid hormone circulating in your system (Graves’) Apparently, one of your labs accompanying your thyroid labs, indicated that you should not be taking methimazole. There are a few serious side effects,and lab results that indicate that you should discontinue taking it. This should have been explained to you.
5. I would ask your doc why you were taking Armour thyroid. This is a thyroid replacement drug that is rarely used, and almost never, if ever, to begin to treat hyperthyroidism (Graves’) Levothyroxine, like Synthroid, is only T4, then the body converts what is needed to T3. Armour, is both T3 and T4. You need to ask your doc about this.

The general pathway for treatment, is first to have the Graves’s diagnosis, then begin taking ATD to get you safe and feeling better. Hyperthyroidism is pretty serious. The ATD’s do that. Both ATD’s have some clinical (you) and lab results which can be concerning. You should have had all of this explained to you. Generally, methimazole is the first line ATD that is prescribed. Some people cannot tolerate it, or the labs show a reason to stop it. There is another ATD called Tapezole, or propothiouricil, that is also used in certain instances.
I do now know what you got switched to from ARmour, but it sounds like you now taking only levothyroxine. At this point, further decisions depend on labs, and how you are feeling. The three choices for treatment are:
1. continuing on ATD’s (this is fairly new, to be on them for a long period of time, but it is working for some people)
2. RAI
3. Total thyroidectomy (TT)
There are tons of discussion about making this decision, and the indications for doing so on this forum Briefly, personal choice matters quite a bit. Some people have strong feelings and opinions, justified or not, it does not really matter, if all choices are available to them. Other variables that matter, may be if an experienced surgeon who has done plenty of thyroidectomies, is in the geographic area where you live. In answer to your question, we are all over the map with our choices, for different reasons. Some are medical, some are personal preference. Kimberly (facilitator of this site) has been on ATD’s for a number of years. When on ATD’s one needs to realize that if you become hyPER again, one of the other choices may need to be made. Some people want to “get this over with” as soon as it is safe to do RAI or surgery. Others, want to wait a long time, hoping there might be a chance for remission (pretty rare.)
I suggest you ask you doctor what he is thinking, and to explain to you more about Graves’ and you.
I chose the surgery, I just wanted to move on as fast as possible. not having a thyroid is as worrisome as being hyperthyroid. Other than taking hormone, it has not changed my life at all. Need to adjust the dose now and then, based on how I feel, and labs.
I am sure you will hear from others. I realize the T3 and T4 I mentioned are confusing, not to mention all of this, but you will learn more on the forum, and I hope from your endo. How do you fee now?
Re food-no real rules, and diet will not “cure” Graves’, but there are a few foods, namely kelp and seaweed, which contain large amounts of iodine. I eat a healthy, balanced diet,and my thoughts are to eat anything you want to eat, with the exception that we should take our thyroid hormone on an empty stomach with a glass of water, and not eat for 1/2 hour, and not take supplements and vitamins for four hours after, cause it interferes with the metabolism of thyroid hormone.
Shirley-
you will get through this, and you have a lot of new friends.

[Corky]

#1181420

Thank you for this great reply!! I appreciate your explanation if the different options and the pros and cons. beyond my new to this site, I just realized that ‘the facilitators’ put your own history at the bottom. Thank you for sharing this personal history! This is not an easy thing to learn you have but this forum is really helpful!

[Shugie53]

#1181421

Dear Kimberly
Im frustrated b/c Ive read so many articles from all over the world about use of steroidal or non-steroidal eye drops even injections and infusions to relieve some of the swelling and also pain behind the eye.
I dont understand why these cant be tried before the person is stable.
If there is a medical study which shows they can be harmful I understand but if a round prednisone due to hives gave a bit of relief it seems to me that something can be done to allieviate the returning swelling pain and double vision. It just doesnt make sense. Now that Ive been assigned a “specialist” who is “on vacay for 2 weeks” Im on hold .
The good news is I have been able to stay on the methimazole but if this is just a temporary fix then maybe I should go ahead & take the steroids & go for the radioactive pill. The dr. told me if I dont take steroids first both of my eyes will bug out.
I feel like its 1970 here where I live. Surely there are more advanced treatments that are helping the side effects of having the graves eye and if surgery is needed I understand not being able to get that until the thyroid is stable but there has to be something to alleviate this for now.
Has anyone tried the steroid or non-steroid eye drops for pain & swelling? please respond
thank you!

[Kimberly]

#1181422

@Shugie53 – Steroid therapy for TED *can* be used during the active phase of TED. It’s the surgical procedures that need to wait until TED is in the stable phase and symptoms are no longer changing. (The one exception is that if the optic nerve is being compressed and the patient is at risk of losing vision, emergency decompression surgery will be done). This graphic from the International Thyroid Eye Disease society does a nice job of illustrating the process:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroideyedisease.org/the-course-of-ted/

Of course, like any drug, steroids do come with potential side effects, so this is definitely a decision to make in conjunction with your doctor – regardless of whether you are using them for relief of existing TED or as a preventive measure in conjunction with RAI.

On a side note, we had a presentation in Baltimore last weekend regarding TED, and the presenter mentioned that IV steroids seem to have a better track record in terms of fewer side effects than oral steroid therapy. The presenter did not mention drops.

[Shugie53]

#1181423

ok thanks
thank goodness no more reactions but Im terrified of next blood test 11/18 b/c for whatever reason thats when I had the reaction , a few hrs after the blood test

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