Please help!: Having just been given a... - Thyroid UK

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Please help!

Chamberlain32 profile image
6 Replies

Having just been given a hyperthyroidism diagnosis and referred to a consultant for investigation and treatment to say my head is fried would be an understatement. I have had so many of the symptoms I have heard or read about for quite some time now.

Still tho I feel I am barely scratching the surface. How serious is this and am I being overly paranoid?

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Chamberlain32 profile image
Chamberlain32
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6 Replies
Clutter profile image
Clutter

Welcome to the forum, Chamberlain32.

Left untreated hyperthyroidism is serious and dangerous but it can be regulated with antithyroid medication, usually Carbimazole. Dose is usually quite high to start with and monitored by monthly blood tests. As your FT4 and FT3 drop into range your TSH should rise and your dose will be titrated down. It's possible that after 9/18 months you may be able to come off Carbimazole and enjoy remission. Remission is likely to be temporary if you have autoimmune thyrotoxicosis (Graves Disease) so make sure to ask your GP or endo to do the Thyroid Receptor antibody blood test (TRab).

If your FT4 and FT3 are very high your GP should prescribe Carbimazole while you are waiting for your endo appointment and if your heart is racing beta blockers can be prescribed to calm it as long as you are not asthmatic.

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Heloise profile image
Heloise

Hi Chamber, I had a family member that came through this without having RAI or surgery. Read all you can because there may be things you can do as far as diet and stress reduction. Stay away from stimulants like caffeine in soda and coffee and maybe even chocolate.

stopthethyroidmadness.com/g...

Hi - really feel for you here. Make sure you do loads of reading around Graves disease (hyperthyroid), as your GP may not be up to scratch. And be prepared for a bumpy ride. It is well worth looking for a sympathetic GP, as you will feel one thing, and the bloods will say something else, and they will go with the bloods. It can take an awfully long time to get this right. Too much Carbimazole will make you underactive, fatigued, bloated and ill. Not enough will keep you with your current symptoms. Its quite a fine line to get correct levels, but be persistent. If your GP wont help, get another.

Graves symptoms often stop after a period of time, then start again. I went into remission on three separate occasions, and eventually had RAI (which I don't recommend btw, but thats a whole other ballgame, and you shouldn't be offered that yet).

Eating well may be useful and good for you, but I wouldn't rely on pretending food alone can cure this autoimmune disease. If you do, then you may end up very very ill indeed.

Happy reading - it really does help. Take care, best of luck.

Fruitandnutcase profile image
Fruitandnutcase

Agree with everything the others have said. Read up and learn as much as you can about hyperthyroidism. This group is amazing, the people on it really understand how you feel and you'll get so mugh good advice and helpful information. My first post said ' Will I ever feel normal again?' The answer is 'Yes, I do' but it took a while.

Do you have antibodies? In which case you could have Graves. I nearly killed myself in my car one Tuesday night ( I knew I wasn't right!) I saw my GP on a Wednesday, blood tests on the Thursday and my doctor started me on Carbimazole on the Friday - my results were sent off to be monitored by the endo until My hospital appointment came up - a three month wait in my area even though I was very hyper.

I know what you mean about your head feeling fried - by the time I was diagnosed I felt like a complete headcase, heart was pounding all the time - you could feel my pulse by resting your hand in my stomach - couldn't sleep, used to wake up dripping in sweat, was a total nervous wreck - nightmare car passenger. I had so many weird symptoms the first doctor I saw clearly thought I was a total nutter and a complete hypochondriac and said ' you need a holiday' that was at the end of August - I came out almost crying with frustration because I knew I was ill, by the November when I was on my knees, another doctor looked at me and knew right away what was wrong.

When I was really poorly I made sure I got as much rest as I could - easy for me because my family are grown up - not so easy if you've got a family. I rested a lot, slept a lot, was really kind to myself and only did the things I felt like doing. I spent a lot of time educating my family and friends about how serious Graves was my trouble was that I looked quite good because I lost a huge amount if weight. That disguised the fact I felt absolutely awful.

I'm in remission now. When they stopped my block and replacement treatment I was told that should my graves come back I will be given RAI. I definitely didn't want that, mainly because I was allowed to go hypo in the early stages of my treatment and I felt dreadful so I definitely want to avoid anything that could render me hypo. I went to my GP who told me the hospital couldn't make me have RAI nor could they refuse to treat me.

I try to eat well, I'm almost GF, I take vitamin D, CoQ10, a multivitamin, B12 ( mine was in range but very low) . Think that's about it.

faith63 profile image
faith63

What tests did the do to determine this? If only a TSH, you may not be Hyper at all. Some people with Hashimoto's, get an initial diagnosis of Hyperthyroidism..so it is very important that you have had complete Thyroid evaluation.

Chamberlain32 profile image
Chamberlain32

Thanks for your response, I have been blood tested and stool sampled and apparently my thyroxine levels are above the normal range. My doctor seemed pretty clued up and recognised many of my symptoms immediately , I have been referred to an endo and given a small dose of carbimazole. My dr. Gave me some information sheets to peruse but thats all I know other than my own research and side effects

Regards.

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