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Suebu63 profile image
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Hi, I've recently been diagnosed with hyperthyroidism, seeing an endocrinologist in 4 weeks time. Not sure what to expect.

I found out after a routine blood test, I got a bit of a shock when got a call to see the gp the next day. After searching online I realised the symptoms I had I was just putting down to age, I'm only 53 but feared I was ageing early if that makes sense.

Anyway I'm going to have a look around here to see if I can pick up any advice from you lovely people.

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Suebu63 profile image
Suebu63
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19 Replies
shaws profile image
shawsAdministrator

Welcome to our forum,

I have hypothyroidism but other who have been or are hyper will respond.

Suebu63 profile image
Suebu63 in reply toshaws

Hi Shaws, thanks for the welcome. My nana had hypothyroidism.

shaws profile image
shawsAdministrator in reply toSuebu63

A lot of times thyroid gland problems can run in families.

Suebu63 profile image
Suebu63 in reply toshaws

autoimmune disease runs on my family. my some is a type 1 diabetic and my nephew has just had iodine radioactive treatment for his hyperthyroidism

shaws profile image
shawsAdministrator in reply toSuebu63

Yes, you are right autoimmune conditions can affect whole families. I have read that Turmeric (curcumin) can be helpful in autoimmune conditions.

draxe.com/turmeric-benefits/

webmd.com/vitamins-suppleme...

Your nephew who has had his thyroid gland removed I hope is prescribedf suitable hormone replacement for him to have a healthy, normal, lifestyle.

Hi, I used to be hyperthyroid diagnosed in 1992. I was referred to an Endo in the Q E Hospital and had to attend regular appointments for 2 years. I was given Carbimazole medication and propranolol. After 18 months on this medication I was given an iodine uptake test, then advised to have Radioactive Iodine treatment.. things calmed for a year but I was advised to have a further RAi treatment. Don't be afraid to ask lots of questions about choice of treatment. My personal thoughts are that I wish I had been better informed of life after RAi and that I had stayed on the Carbimazole a lot longer before choosing that treatment. x

Suebu63 profile image
Suebu63 in reply to

Hi mango, my nephew had the radioactive treatment 2 months ago. He's only 23. He seems to be doing ok but it's early days yet

in reply toSuebu63

Hi Suebu63,

That's good to hear your nephew is doing ok after the treatment. I don't mean to sound negative, but like so many others on this forum I lacked information from the medical profession. I was told I will be easier to treat when I eventually go Hypothyroid...took their words for it. A recent scan shows that I still have a thyroid gland but it naturally as shrunk.. Yearly TSH test and sent on my way. No medication, no thorough testing and constantly ill with one thing or another ever since. Given 25 mcg thyroxine only 5 years ago and been left on that until last September when I could hardly walk and on the point of giving up. This is where we are Blessed because we have this forum and the experience of all on here. I have only become knowledgeable of how to go about helping myself because of this forum, not any medical person. I was never informed about having Hashi's until I posted my test results. (Thanks to Clutter). Therefore had never taken the correct supplements or eaten the best food to help myself. Your nephew has the advantage of your support and info from this forum. He has every chance now of good health x

Suebu63 profile image
Suebu63 in reply to

thank you mango. forewarned is forearmed so they say and at least now I know what to look out for with my nephew, I'll be seeing him in the next few weeks and will be asking him a few questions. I'll also speak to his mam and let her know what to look out for

in reply toSuebu63

He is a fortunate young man having you has his Auntie x

willowland profile image
willowland

I'm 53 also just diagnosed hyperthyroidism as well. I'd had a lot of symptoms palpitations, tremors, bowel and bladder incontinence and getting really hot or cold and was finding going to work and travelling between sites really difficult.

Doctor put me on 20mg carbimazole, still struggled with symptoms so he put me on propranolol which as long as I take 2 three times a day manage the symptoms so I can work.

Saw endocrinologist and he's doubled the carbimazole.

I have to have blood tests in 6 weeks and 10 weeks and then see endocrinologist in 3 months.

Hope that helps.

Suebu63 profile image
Suebu63 in reply towillowland

Oh willow land the feeling hot is awful. I thought it was the menopause but realise now it isn't.

willowland profile image
willowland in reply toSuebu63

It's really embarrassing, I get very clammy and before I was diagnosed had to do a talk to a roomful of people, I was dripping with sweat, the air-conditioning made no difference, I just had to keep wiping my face and neck with paper towels and try to remain calm, while talking.

I've just got a mini fan from Morrison's that plugs into a USB port......bargain at £3 to carry around with me.

Suebu63 profile image
Suebu63

I might need to invest in one of those especially now that summer is almost here haha.

It's awful though especially at work, I'm boiling hot and everyone else is cold, keep adjusting the heat/air con and when no one is looking, so maybe a hand held fan will come in handy.

At the moment I'm just taking propranolol so hoping the endo will give me something else to help with other symptoms.

willowland profile image
willowland

It plugs into a usb port on a computer or if you have a plug to recharge a kindle/camera you can use that. My job involves going into 22 schools, I'm often put in a room without a window that opens which is a nightmare.

Pippins2 profile image
Pippins2

Hi Sue I was diagnosed with hyperthyroidism by blood tests via my GP in 2013.I had gone to see GP with what I thought was menopausal symptoms, I was hot,sweating alot, tearful, shaky, palpitations. I was also going to the toilet alot when normally I am very constipated. I am suprised your GP has not started you on Carbimazole whilst you wait for your endo appointment as that is the usual procedure. The Endo will test you for Graves Desease as that is the most common cause of hyperthyroidism Sometimes if you are lucky it is just a virus that causes temporary hyperthyroidism. After a course of Carbimazole I have been off all meds and in remission for nearly 2 years now. I did think it was starting up again recently following major surgery but I think I was mistaken and it was a reaction to a pain med! !! Anyway good luck, let us know how you go on. ..Pippins2 x

Suebu63 profile image
Suebu63 in reply toPippins2

Thank you pippins2, I will post an update after I've had my appointment.

I think how the gp treats you must depend on the policy of the practice as a woman I work with has been prescribed tablets by her doctor, can't remember what they're called but definitely not carbimazole. She gets a blood test and her weight checked every 4 weeks at the practice and has never seen an endo. She's going to ask her gp for a referral as she's concerned that she's lost a lot of weight and it's not going back on.

On the subject of weight loss, that is one symptom I haven't got, my weight has stayed the same, although my appetite has increased, I'm ignoring this appetite increase and trying to stick to a healthy diet.

humanbean profile image
humanbean

I've never been hyperthyroid, but I have read on here that doctors apply a lot of pressure on people who are hyperthyroid to take the radioactive thyroid option to kill off the thyroid. They do this because they can get rid of the patient. They are likely to become hypothyroid and doctors consider hypothyroidism much easier to treat. (People with the condition might beg to differ.)

There is someone on here - sorry can't remember who - who was put on block and replace i.e. block all thyroid output and then replace with levothyroxine (levo is the standard treatment for hypothyroidism). At one point they were under-treated with levothyroxine, became hypothyroid, and hated it. They have refused to take RAI and do well on carbimazole.

Whatever you do, just remember that you can't be forced to take any treatment at all, no matter what the doctor says. They also can't refuse to treat you either. So if you do well on carbimazole, don't be pushed to kill off your thyroid. Once it has been destroyed you can't get another one.

Take your time, don't be rushed into anything, and learn all you can. Don't forget, if you have problems with carbimazole or block and replace or any other treatments for hyperthyroidism, there is also the option to have your thyroid removed completely. RAI should never be used on someone with Thyroid Eye Disease, for example, because it makes the problem much worse, so if the thyroid has to go then removing it would be the method of choice if the eyes are at risk. There are probably quite a lot of scenarios where removal would be preferable to RAI, but I don't know what they all are.

There are also people with hyperthyroidism who found having RAI improved their lives immensely.

Suebu63 profile image
Suebu63

Thank you for this advise human bean. I'm going to have a whole list of questions for the endo and I'm thinking I might get the oh to come in with me and brief him on what to expect, hopefully if I miss or forget something, he will be able to step in.

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