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Autoimmune disease

Positive hyperthyroid treatment stories

11 replies

CanIhavedessertfirst · 20/03/2018 20:09

As the title suggests, I am looking for positive stories from anyone who has been treated for hyperthyroidism, as all I find on Google is tales of reduced quality of life, massive amounts of weight gain and extreme fatigue.

I am going to have a total thyroidectomy next month and am really worried about adapting to normal thyroid levels. My consultant has only advised that I rest for a few weeks after, make sure I take the replacement hormone as and when I should and reduce my calorie intake. How did you/do you cope post treatment? Have you had to change your life style much?

OP posts:
Purplelife · 23/03/2018 15:24

I had Graves Disease 15 years ago with 1/4 chance of the tablets working and needing radiation. I cut out soya and didn’t eat broccoli and cauliflower ( I forget what they do). Anyway I think I was on the tablets 9-12 months and at the end he gave me a brochure for the radiation and cut my tablet down further and when I went back, I was in remission. I don’t have hypothyroidism which was one of the things you are supposed to have after Graves. I did get fibromyalgia at the end of treatment, however once you have one autoimmune disease, you do get others, unfortunately. At that time, I had it there was an thyroid site, some Facebook hypothyroid support groups and I read a book or two. Sorry I can’t be of any further help.

Nigglenotes · 23/03/2018 23:10

I had hyperthyroidism three years ago. I only found out about it when my heart rate hit 180 and was in AF. One minute I was making breakfast for the children, the next I was blue lighted to hospital as the heart rate was crazy. At one stage they put a mat behind my back to prepare to stop my heart as it went to 200 beats. Then the bloods came back and the thyroid tests showed the problem. Spent a week in cardiac unit as my heart rate slowly decreased. Can't remember the name of the treatment, began with P. Anyway, I was immediately offered radiation /removal of thyroid. Researched a bit and said no thank you to the consultant. Every six months I have a blood test to check thyroid levels. So far, its fine. I am happy with my decision. The biggest reason for not accepting the advice of the consultant, and it is advice, was that I didn't trust the medical system is get the right artificial levels right for me after removing the thyroid. It is very complicated and, it seems, very unsatisfactory for many people on forums. My thyroid went nuts once, and I wasn't prepared to have it removed for a synthetic treatment that seems hit and miss. But that is just me. I took a second opinion from an expert at Addenbrooks afterwards and he opined I was borderline Graves disease and unusual. If in doubt, get another view. I still have a thyroid and it works fine currently despite what happened. Obviously I would have had it removed if the malfunction was a result of thyroid cancer.

CanIhavedessertfirst · 25/03/2018 18:05

@Nigglenotes I don't actually want mine out, but I felt a bit forced into choosing between the radioactive iodine and the surgery! I think I'm going to make an appointment and discuss staying on meds for the time being.

Dh's cousin had hers out and has had no problems, but an old work colleague has had a horrible experience, which she describes as living in fog all the time, because her t4 levels are low normal, but considered exactly that - normal and no need to do more, because her tsh is 0.5.

OP posts:
ivykaty44 · 25/03/2018 18:13

Had my thyroid removed 2 years ago and it’s all fine.

I was back running and cycling 10 days later.
I found the op relatively easy, up two hours after op and walking to loo, calcium levels weren’t great but eventually got home and apart from a little discomfort everything was fine.

I found I felt a bit weird a few weeks after as my thyroxine levels changed, but no biggy
I go to the gym, cycle and run.

I’m not overweight and take thyroxine everyday

Good quality of life, I have photographs of my scare if you want to see?

BlackHillsofDakota · 25/03/2018 18:14

Not what you're looking for but I would say no if I had the chance again. I had RAI two years ago and feel so much worse now than I did and have put one 4 stone in weight.
I felt very pressured to make a choice, was told I couldn't take carbimazole long term etc.

Brummiecahhh · 25/03/2018 18:21

Total thyroidectomy. Never felt too tired or put on weight.

I haven't noticed any difference before or after. Mine is slightly diff as I had neck dissection as well, so v large scar. Having seen other TT scar, they are barely visible after a while.

ivykaty44 · 25/03/2018 19:57

I think RAI is very different from TT and leads to much more juggling medication

A TT gives a clean slate and you get thyroxine does and that’s that

Nigglenotes · 25/03/2018 21:47

OP, just take your time to look at the options. I was also on carbimazole. Was told to take it for months, but just stopped about three weeks after coming out of hospital with no ill effects. I remember being in CCU about day three being told I needed either radiation or removal. Quite frankly I think it is more standard practice than individually tailored.

I am not particularly belligerent, but always think of the context. In the late 1960's, for example, my mother had every single tooth removed on the advice that, during her pregnancy, tooth infection was a risk. She was 24, and fitted with false teeth. It may have been a long time ago, but still, the way medical ideas are presented to the patient haven't changed that much when you think about it. It was policy.

And there is a protocol with thyroid issues, and you have been given the two protocol options. The results of which seem to have ongoing consequences for a lot of people. To be honest, some basic research about the "options" when I was still hyper was overwhelming, and I refused to be managed into the pathway.

With the thyroid, I would step back from the pressure and just try to maintain the status quo if possible. Unless there are pressing medical issues that change the circumstances.

Interesting about the iodine vs removal reactions.

Nigglenotes · 25/03/2018 21:48

Ok, I am belligerent.

RaindropsAndSparkles · 25/03/2018 21:52

Gosh yes OP. Hyperthyroid and v severe in abput 1990. Had sub total thyroidectomy later that year. 100mcg of thyroxine ever since No subsequent problems. Normal weight, had two DC, good relationships, syccessful career. Am 58 now. No probs at all and no other auto immune illnesses.

Good luck op. I have an annual blood test.

CanIhavedessertfirst · 02/04/2018 21:58

Thank you all! I went back to my gp last week and said I had decided against any more permanent solution for the time being, that I was coping on meds and I'd rather go as I am, as once it's out it's out. She did try and tell me the TT was "for the best" and I told her I'd rather come to that conclusion myself.

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