[hypermarie July 9, 2019 at 11:06 am Post count: 3]

#1060969

Hello to you all,

My name is Marie, I’ve been lurking here for sometime as I try learn about this disease.

I was diagnosed about three weeks ago when I noticed that my HR was higher than my norm, including shortness of breath with exertion.

I’m so terrified of this disease as heart disease and stroke runs rampant in our family.
I was started on Methimazole 10 mg 4x per day and propanolol (which was replaced by my endocrinologist two days ago with Atenolol 50 mg per day). I felt the Methimazole working around Day 10 so I was getting hopeful!

On July 4th I had/have a severe allergic reaction to Methimazole. I was literally covered in hives since July 4th. I called my endocrinologist the next day and she told me to stop Methimazole and take Benadryl. This morning I caved in and went to the ER. They gave me two rounds of Benadryl, Pepcid and steroids. They said the reaction was pretty severe.

I feel much better now as I write this post but I feel the itch starting to creep up again although not as bad. So I’m on Benadryl and a steroid pack.

I’m so confused and frustrated!!!

I’m searching for answers and I hope you guys can help me navigate this confusing and frustrating disease:

1. Since I’m allergic to Methamizole, does that mean that I’ll be allergic to PTU? My doc mentioned this but she’s hesitant about this because of potential liver disease.
3. I’m also allergic to shellfish. Would that stop me from doing the Radioactive Uptake Test and eventually RAI? I’ve been reading up on this and it looks like it probably would be ok.
4. From what I’ve been reading here, I need to have my thyroid levels stabilized before TT, which is my preferred option anyway. Is there another way? My levels are pretty bad…ft4 is 4 times the upper limit and TSH is .001.
5. So far, I have no eye involvement. Would TT be even an option for me?

I really would like to get better and willing to even try PTU but I have to stop any ATDs before I have my Uptake scan on the 22nd.

Thank you for letting me vent,
Marie

[KimberlyOnline Facilitator July 9, 2019 at 6:18 pm Post count: 4288]

#1185606

hypermarie wrote:

1. Since I’m allergic to Methamizole, does that mean that I’ll be allergic to PTU? My doc mentioned this but she’s hesitant about this because of potential liver disease.
3. I’m also allergic to shellfish. Would that stop me from doing the Radioactive Uptake Test and eventually RAI? I’ve been reading up on this and it looks like it probably would be ok.
4. From what I’ve been reading here, I need to have my thyroid levels stabilized before TT, which is my preferred option anyway. Is there another way? My levels are pretty bad…ft4 is 4 times the upper limit and TSH is .001.
5. So far, I have no eye involvement. Would TT be even an option for me?

Hello and welcome – we’re fellow patients here, not doctors, but a few notes…

Yes, a certain percentage of patients who have a reaction on methimazole will have the same reaction on PTU. Hives are tricky, as they can be a side effect of the meds – but they can also be related to the hyperthyroidism itself.

It’s believed that the issue with shellfish allergies is a specific protein, not the iodine – so we’ve not heard of any issues with patients with this type of allergy getting RAI.

The preference is to have normal thyroid levels before surgery, but the doc can use a combination of beta blockers and potassium iodide to reduce the risk of thyroid storm.

There’s no evidence that surgery causes eye issues, and there’s some anecdotal evidence that some patients see an improvement of eye issues following surgery.

[hypermarie July 10, 2019 at 9:46 am Post count: 3]

#1185608

Thank you, Kimberly! You are an amazing resource and I am thankful for all your sound advice.

I saw my Endo yesterday and I told her flat out that my preferred choice for a long term fix is TT. She’s hesitant about it and mentioned all the scary stuff. I have access to top-notch medical care(thankfully!) so I will see if I could get an appointment with an Endocrine Surgeon, hopefully soon to discuss my options. I also have an appointment with a Neuro-ophthalmologist on the 26th and an Uptake Scan on Monday. Then we weigh our options. Hopefully PTU works for me to buy time before TT/RAI.

Thanks for letting me vent and clarifying all my questions.

Sending warm healing vibes to you all!

[Liz1967 July 10, 2019 at 11:53 am Post count: 305]

#1185609

I had a thyroidectomy six months after my Graves diagnosis six years ago. Best decision I ever made. The eye disease, which began within two weeks of starting methimazole, burned out pretty rapidly after thyroid removal, which several studies have found to be the case. The surgery was really easy, outpatient on a Friday, out to lunch with friends on Monday. It was done by an ENT surgeon who did many thyroidectomies. I saw a neuroophthalmologist at first but the majority of my extensive eye care was with an oculoplastic surgeon , so my best advice would be to find a good oculoplastic surgeon and see him. Hopefully you will avoid the eye involvement.

[epeets July 11, 2019 at 10:26 am Post count: 1]

#1185610

So sorry to hear your experiencing this! I was on Methimazole for a year and a half before I too had an allergic reaction! I ended up opting for the TT as I was concerned of a reaction with the RAI or not putting it into total remission. My levels were not completely stable and they were able to support me with my decision. Keep researching and go with what feels like the right choice for you! Thyroids are tricky….

[hypermarie July 12, 2019 at 8:49 am Post count: 3]

#1185611

epeets wrote:

So sorry to hear your experiencing this! I was on Methimazole for a year and a half before I too had an allergic reaction! I ended up opting for the TT as I was concerned of a reaction with the RAI or not putting it into total remission. My levels were not completely stable and they were able to support me with my decision. Keep researching and go with what feels like the right choice for you! Thyroids are tricky….

Thank you epeets for sharing your experience. I have scheduled appointments with two, possibly three surgeons. Crossing my fingers they will be supportive with my decision.

I’m overwhelmed with the number of tests, blood draws, and appointments! And I’m so incredibly tired to keep track and keep up with all of them!

[Author]

Posts