[VanIsleGal]

#1059114

My 3rd time with Graves’, 2nd time on Tapazole and can’t believe how much worse my blood got in a month. I started to stabilize a month ago then this month my blood results shifted a lot…meaning Graves’ results are worse. I have never been hypo. I am on 25mg and last month my doctor didn’t want to increase it. Will talk to him tomorrow, but can hardly believe this could happen! I didn’t think it was possible! When I heard of this before I always wondered if the person was taking their meds every day!

Frustrated in Victoria, BC Canada

[Harpy]

#1172254

Can you elaborate a bit more on your history with GD, how long between incidents?
Have you made any changes in lifestyle, diet etc?

[Bobbi]

#1172255

I am sorry to hear that you are hyperthyroid again, and with such “vigor.” I do hope you are feeling better soon.

[adenure]

#1172256

Just a big cyber hug to you. I’m truly amazed at how much of an impact our thyroid can have on our entire being. Who would’ve thought? Before Graves, I took for granted all my “normalcy”- whether it was physical, mental, emotional- then when I went hyper, I was like, “What is happening to me????!!!!!!” I was convinced I’d never be “me” again. Really scary. I was on methimazole (it did help my thyroid), but it beat up my liver, so I’m going into surgery next week. My numbers are stable right now, but I know I have to take the next step so that the hyper monster doesn’t return. I’m just hoping I don’t make too much of an acquaintance with his twin, “hypo monster”! Stay strong.

Alexis

[VanIsleGal]

#1172257

Thanks for your kind messages. My doctor was shocked with the results and put me on 40mg a day Tapazole and said if this didn’t work in a month I would need emergency surgery. Wouldn’t surgery while hyper be risky? Oh Adenure, I am worried for my liver now!

Harpy, I have had Graves’ 3 times. First time I was on PTU for over a year (a little under 2 years) and then in remission for 5 years. The last time I stayed in remission for less than 2 years after a stressful move. My diet, meditation hasn’t really changed, except I can’t exercise with Graves’ as I am very weak. I can barely get out of the bathtub I am so weak. I was able to go on disability so I am not working a lot now. I am a university educator. I find my mind isn’t sharp enough to do my job well right now. Let me know if you have any more questions Harpy.

Take Care Everyone! xoxo

[VanIsleGal]

#1172258

Honestly Harpy, I wish I had the option for the surgery after my 1st time with Graves’. I only had the option of RAI and won’t do this. I don’t know if your worst blood results are an indicator of Graves’ coming back? Knowing what I know now, I would never have done this remission route. Now living in a different city, I can have the surgery!

[Harpy]

#1172259

So sorry you haven’t been able to shake it, hope your numbers come down and stabilise quickly so you can move forward.
I scour the net looking at different individuals experiences so that we might get some insight into what the future may hold for my partner. Currently her thyroid hormones & TSH are all in normal range and antibody levels have also dropped right down, she is on the 50mg of ptu and we are starting to wean that down, and attempt remission in about 6-12 months, she was fortunate that her body took to the ptu quite well and has no negative indicators on WBC or liver enzymes.
Thanks for sharing your story.

[adenure]

#1172260

The good thing though is that you have a plan to get normal as fast as possible to be ready for surgery. 40 mg. is a lot, but I know that ncpatches (here on the forum) was put on that amount to prepare her for emergency shoulder surgery. Even though my liver enzymes went high, as soon as I stopped the methimazole, they went down. They are back to normal now. The good thing about the liver is that it does regenerate quickly. My guess is your endo. doesn’t have a plan to keep you on that dose for too long, but just to get you stable enough for surgery. Are you talking with surgeons yet? Maybe he/ she can get that ball rolling for you with referrals just to be a step ahead so that when you’re ready, you have your surgeon set, you’ve talked with him, and he knows that you’re kind of “in the wings” waiting to get in there. Prayers for you. Lots of support for you here.

Alexis

[VanIsleGal]

#1172261

I think if my levels look better on 40mg I won’t have the surgery right away. Or that is what I understood. I am on that dose for one month minimum. My blood will be tested again in a month. I am not allowed to see the endo again for a month, this is a rule here for seeing specialists, and I can’t talk with the surgeon yet. I am confident I will get a good, experienced surgeon.

I go for a bone scan on Thursday to see if calcium deletion is taking its toll at all.

Thanks Alexis and others for all the support! Hugs…

[VanIsleGal]

#1172262

Does anyone think they would take out my thyroid if my levels are hyper? That is what I understood from the endo today. What happens if you need emergency surgery when hyper? :S

[adenure]

#1172263

I have read about thyroidectomies being performed on people who are mildly hyper with a preparation of betablockers and SSKI drops (even though I’m in range right now, I still am supposed to take a minimum dose of the above for a week before surgery). I will post that link for you when I find it- it is a pdf about preparation for thyroid surgery that I’ve read way too many times!!!

I also have read that emergency surgery on a person that is very hyper is dangerous, but it can be done. I think the bigger danger is operating on the thyroid itself when someone is in a very hyper stage. Emergency surgery on an appendix while hyper isn’t as dangerous as cutting into a hyper thyroid for example. Again- I got this info. from pdf’s online written for doctors. I really try to stay away from reading too many forums, people’s stories and opinions because they only serve to freak me out in general! I will look for the links for you so you can check them out too.

Alexis

[adenure]

#1172264

Okay– it is a pdf, but google “Perioperative management of the thyrotoxic patient” and it will come up and you can open it. It has good information.

Alexis

[VanIsleGal]

#1172265

Thanks a million Alexis! I will have a look tonight! I might have to call the endo back as I don’t understand him. It sounded like he would send me for surgery if my levels stayed off the chart like now. I guess on 40mg this would be unlikely.

Ugh take care Alexis!

[snelsen]

#1172266

With uncontrolled hyperthyroidism with all the serious symptoms, and/or thyroid storm, the symptoms are treated. Surgery is not done. It is not indicated. Metabolic systems, electrolytes, cardiac management, O2, plus a careful administration of ATD with the proper timing, and sometimes Lugol’s (KI or potassium Iodide)
So, TT is not the reason for emergent situations. Generally, TT’s can be planned, with the proper prep of Lugol’s solution 7-10 days pre-op.
A TT can be done when if labs show you are hyper, but if you cardiac status and BP are ok, plus a surgeon’s careful evaluation.
Of course it is optimal to take ATD’s before surgery OR RAI that is the goal to decrease the amount of thyroid hormone racing around. This is what is usually done.
Good question to check out with your surgeon.
VanIslegal, what are your symptoms?
Shirley

[snelsen]

#1172267

I forgot to say that I am a fellow patient, not a medical type person. This is what I have learned from my docs (plus working in an OR in a hospital for many years…)

[Author]

Posts