[VanIsleGal]

#1172268

Hi Shirley. My symptoms are the usual ones, 120-150 heart rate without beta blocker, worsened asthma, leg swelling, thirsty, diarrhea, no sex drive, boils, lack of concentration, mind fog, eye pressure, shaking, hair loss, tired, very weak. Are you asking my symptoms in relation to the surgery? I think the endo put me on 40mgs a day so I can be a candidate for surgery in the next few months.

Thanks for the surgery report. I am presuming 40mgs has to work to get the T3 and T4 normal. I am on that dose for at least a month until I see endo and have blood tests.

xoxo

[snelsen]

#1172269

Yep. That is hyper world! You are on some beta blockers now, aren’t you? Just want to be sure that you are, and be equally sure that you are not marching around your world with a heart rate that fast! (:
Shirley

[RebeccaJT]

#1172270

Hiya

They would bring your levels right down with Lugols iodine pre op to shut the thyroid down and slow down the blood supply. Don’t worry about that. Make sure you get a surgeon who is an endocrine specialist and has ideally done more than 1,000 operations. Ask questions, and ask who and how you will be followed up and cared for ….

I’ve had a thyroidectomy and whilst life is not perfect, like someone else has said on this thread, knowing what I know now, I’d have done the surgery at the very beginning. This is a miserable disease and it turns out I was misdiagnosed for twenty years, my thyroid was destroyed beyond repair and living through it’s ‘death rattle’ as it spat out hormones was horrific. Plus the INFLAMMATION in your gland can cause 70% of your symptoms regardless of your blood ranges. I was hammered into the ground on Carbimazole and was hypo if anything and still felt dreadful.

You say you’ve ‘had’ Graves three times. Actually you’ve probably always had it and you will always have it – whether they take your thyroid out or not as it’s an autoimmune disease that attacks your thryoid. It will in all likelihood settle down once it’s favourite attack site is removed but you will always have Graves. It might have settled down and flared up a few times over your life too, but it never left you. That’s a tough reality to face with this illness. We have Graves.

Have you had your antibodies tested for Hashimotos disease as well? In my humble opinion there are far more people wandering around with T3 toxicosis being missed in endocrine medicine, it’s what makes you feel so insane. I had both conditions running concurrently and boy was that one party you would not want an invite to! I couldn’t have RAI as I had TED (not that I’d have done it anyway).

I spent two years really trying for remission but remission is very rare and to achieve another remission after a relapse is even rarer. I did and still do all the alternative and lifestyle changes you mention (you might also want to look into Hashis and the gluten connection) but if I had my time again I’d take the surgery without hesitation the moment it was first mentioned.

That said, that’s just me and my opinion. You can read my entire story on ‘What to ask surgeon re: thyroidectomy’.

Best of luck to you

Rebecca
x

[VanIsleGal]

#1172271

Ya I have never been hypo, but had Graves’ 3 times. I take propranolol but prefer the once a day bisoprolol. I damaged my heart the 2nd time with Graves’ so I take beta blockers for life now.

Thanks Shirley!

[catstuart7]

#1172272

VanIsleGal, I’m sorry to hear Graves damaged your heart – how did that happen? I too am trying to go down the medication and remission path but I don’t want to put my heart at risk. It sounds like you wish you’d just done surgery to start with? Good luck with getting the levels where you need them for a successful surgery.

[ncpatches]

#1172273

Like Alexis said, I was on 40 a day, 20 twice a day for 3 weeks before my shoulder surgery. From what my DR and the endo team at University of North Carolina said, they wanted to hit it hard and fast, to get it close to normal before the surgery. I know there are meds they give someone that is hyper and needs emergency surgery, just can’t remember what it is (thanks to graves, I have CRS too LOL) I’m sure someone else can tell you about it.
You were so fortunate to have had such a long remission, I only pray I can do as well. Hang in there and keep us posted. HUGZ!

[VanIsleGal]

#1172274

Rebecca, thanks for the great info! I was tested for antibodies, but I don’t know about Hashimotos. My endo said my antibodies showed I have Graves’ plus I had the iodine uptake in the past.

Cat, I don’t know details with what happened to my heart. It is something minor, but my heart rate stayed above 100 even when my blood levels were normal. I took a low dose of beta blocker when I was in remission. I didn’t have the option of surgery until now, because I moved 2 hours south to a bigger city. I wanted the surgery after the 1st episode, but my endo at that time wouldn’t send me for surgery. I refused RAI. I have given up on natural remission. I wouldn’t recommend it. I have lost so much having this disease flare up 3 times. I am trying to get my career back on track. I am very fortunate to have an amazing partner who is very understanding and supportive. When I was crazy he knew it was the disease, not me.

I will look at your story Rebecca!

Hope everyone is doing okay! Happy Weekend!

[VanIsleGal]

#1172275

Hi ncpatches! I just saw your post! We posted at the same time! Did you have any side effects taking 40mg? Yesterday I was very nauseated. I threw up for 6 months when taking Tapazole before. My dose at that time was 20-30mg. I can’t remember why I didn’t ask to go back on PTU. I took 20mg yesterday instead of 40mg so I am not nauseated today. Tomorrow, after taking 40mg I might be sick again.

Hope you are good!

xoxo

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