[Candi28]

in reply to: Old to graves, but scared from recent flare #1178695

Thank you so much for all of this information!!! I appreciate that!!

I called my endo this morning regarding the rash and the nurse didn’t listen to me too well. She was surprised when I told her my rash would come and go for about an hours time and not come back until a day or so. Since I started the PTU yesterday I was told to take some claritin to see if it helps. Otherwise she said my option was again, RAI or TT.

I have been hearing some things about Low Dose Naltrexone and am thinking about looking into that. I want to make sure I explore all of my options before I ablate the thyroid.
‘ I feel like I got so close to remission, dang cold!

Thank you again for your wonderful and informative reply!!

snelsen wrote:

Hi Candi,
You’ve gotten some good thoughts on the recent posts. I know you realize we are all fellow patients here, and although most of us have Graves’ or TED, each of us have different experiences with them.
One thing that seems a common thread, is how difficult it is to be hyper. We feel like we’re crazy, sometimes other people think the same thing. We just feel terrible, and not like ourselves at all. I remember how impatient I was when hyper, all I wanted was to GET BETTER, get this behind me, and live my life like the normal person I used to be. Believe me, if one thing is the same for every single one of us, it is wishing there were a magic pill to make all this go away and get better quickly!!!!!

I am sorry that you have a new flare of Graves’, for you have had eleven years of being back to your old self with taking ATD’s.

Here are some of my thoughts, plus a couple questions for you to think about.

1. Rash-Despite the long time that you have been on methimazole, it does sound like that you have developed a true allergy to that drug. And, of course, the way you will know that, is to stop it completely. I’d expect your doc, whoever is making the decisions, will be ordering frequent labs at the beginning of taking PTU, that is what usually happens.

2. Drug doses-they are different drugs entirely, and the composition of mgm. is also different.

3. I hope your indigestion goes away, and that it is an infrequent occurrence.
I have found that I am uncomfortable if I eat right before I go to bed, but that rarely happens.

4. All of us have different thoughts and feelings and conclusions about the treatment we choose. And you usually do have a choice. Not always, for certain people, a thyroidectomy is the way to go for other reasons. You will find that there are people on the forum who have chosen each one, for their own reasons and thoughts. Certainly if you have a fear of anesthesia, then perhaps RAI is better for you. I’d like to comment that anesthesia is a darn good state of the art, compared to what it used to be.

5. Re the TED that you had previously. The usual path of TED is two stages, the active, or hot phase, and the inactive, or cold state. TED can be very mild, moderate or very severe. Generally there is no treatment that would make TED go away. But there are several things to do to help the symptoms, like eye drops for dry eyes, sun glasses for sensitive eyes, and prisms for double vision. With that in mind, see the suggestion in #1 below.

Questions-

1. I do suggest you talk with the endocrinologist about RAI and eye symptoms.
With that in mind, I suggest you go to a good ophthalmologist who is familiar with TED, and get a good baseline eye exam. There is some pretty good evidence now, that RAI can exacerbate TED, if you are experiencing a recurrence of TED as well.

2. Do you have a related cardiac condition, that requires the Holter?
When you see the cardiologist, he/she is the one to ask if there is a drug to take to decrease your heart rate without lowering your BP. And check with the endo and cardiologist to see what they have to say about your heart rate going down with ATD treatment.

Welcome back to the forum, you have a lot of friends here. I did not get a great sleep when I had a Holter, so it will be nice to get it off tomorrow!
Do write again with your thoughts and updates.
Shirley

[Candi28]

in reply to: Old to graves, but scared from recent flare #1178693

Thank you to all of you for your replies!

I have decided to give the PTU a try after getting a near full body rash yesterday. It was getting to be too much to bare.

I have my appt with the cardiologist tomorrow for the 24 hr holter, it’s too bad I am running on very few hours of sleep. I have awful indigestion tonight and it’s kept me up all night.

I don’t think I could do TT with the fear of going under anesthesia, but am really considering RAI. I am just hoping I don’t get TED because I had that when I was first diagnosed with graves many years ago, but it went away with treatment.

I wish there was a magic pill to make this all get better quickly!

Thanks again for all of the replies!

[Candi28]

in reply to: Light Sensitivity and Pressure? #1061499

Hi Krisann, I am in Bradenton, so I go down to Sarasota to the Sarasota Retina Research center. They did a very close exam, you might want to try there.

For the others, Yup, looked for cataracts, my eyes are healthy as ever, no reason on paper why I should have the light sensitivity, but I have it. The glare too!!! Halo’s are too bad, but horrible glare and I get a rare phenomenon where if I look at an object that is bright or just dark on a bright background and I look away (like the tv set) I can see a slight after image. woohoo, it’s tons of fun, NOT!

Thank you all for all your help. I am thinking about getting Blu Blockers, has anyone heard of these?

[Candi28]

in reply to: RAI vs Thyroid surgery #1061660

Congrats on your pregnancy! I was able to get preggo with this nasty crap, I am glad you got yours taken care of first.

I guess my main question for everyone is what does the Thyroid gland really do? Once it is out does the system go back to normal?? Will it still be wonky even with the thyroid hormone? I have been using ATD’s for 10+ years now and they are not working too much, my levels are normal but my antibodies are through the roof, could my body of gotten used to them?

[Candi28]

in reply to: RAI vs Thyroid surgery #1061658

Hi, this may sound like a silly question, but once the thyroid is removed and they give you the hormone replacement…. is this all the thyroid gland is for? I am concerned about something my body will be missing down the road?? Does the thyroid only make thyroid hormone?

Thanks,
Candi

[Candi28]

in reply to: Bizare vision symptoms….. #1061763

Wow, thank you all for your input and the link!!! To answer your question regarding the length of time on ATD’s… I was stable for a while while an Endo was overseeing me, but she never tested anything much other than TSH. She only went by that number. The Dr. I am seeing now is wonderful. She actually said she wouldn’t recommend me to do the RAI and prefers removal for my case… maybe because of the previous TED and the now vision symptoms I am having. My headaches are getting worse and now I feel like I can’t breathe.

[Candi28]

in reply to: Bizare vision symptoms….. #1061759

Hello,

Thank you both for the replies.

My neuro opthalmologist was not too concerned with my eyes and his specialist (for autoimmune related illnesses) said the vessels seemed inflammed in my eyes, but the dr. seems to think I have occipital neuralgia because I also get daily headaches.

I myself am unsure as I’ve spoken with other graves patients who have my exact problem/symptoms. I am also concerned that it’s from the ATD’s. I am thinking about going permanent to get off the meds but am so afraid. I do not know the down side of ablation vs removal. Are there ways to protect the vision now from the RAI?

Thank you both.

P/S I agree I have been on the methimazole for too long. My insurance ran out years ago and that is why I could not do surgery. My insurance will not cover anything thyroid related now, so it’s all out of pocket. I need to see what is safest and cheapest.

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