Please tell me your Hyperthyroidism stories!

[Jemimapyjamas]

I have just been diagnosed and am waiting for an appointment. I initially went to the GP as I was breathless (I am generally pretty fit) over the slightest thing, but now I know what is causing it I think I have a few of the symptoms (thinning hair is one, even though nobody else seems to have noticed when I mentioned it!)
I have also recently lost 16b over 3 months by cutting out alcohol, or so I thought... I am very fit and presumed that that was the only thing hindering my weight loss. I know how shallow this is, but I would be really pissed off it I now put it back on again and it was due to the thyroid! Is this likely to be inevitable? Also, I am now seeing things about mood swings and anxiety, and all sorts of awful sounding side effects of the drugs.
I have been referred to the hospital to be seen 'soon' and would like to know what to expect - thank you!

[serialtester]

What's your tsh/free t4? I've got sub acute thyroiditis. My main treatment has been beta blockers.

My main symptoms were a racing heart (160bpm+ over several days) fine tremor, insomnia, anxiety, sweating, messed up periods and weight loss plus being manic from time to time.

My thyroid disorder is self resolving (which is good!) being hyperthyroid sucks though!

Took me 3 months for an endo appointment by the way. Good luck to you, pm me for a chat if you need to.

[Jemimapyjamas]

Thank you!
I have no idea what my numbers are, she just said 'its high but don't panic' and said she would refer me ASAP 'to the experts,'

Is it something that I will have forever? I am already a Type 1 diabetic so will be pissed off if it is!

[digerd]

There are treatments for Hyperthyroidism including an operation - partial or total Thyroidectomy. I had the former and was cured
Treatments include mainly Carbimazole tablets taken to slow the Thyroid activity down.
Total Thyroidectomy needs supplementation with Thyroxine tablets for life.

Your Diabetes 1 will probably be a deciding factor on which method will be the most suitable for you.

Good luck.

[Jemimapyjamas]

I am reading up on previous threads on Carbimazole and it sounds bloody awful!

[serialtester]

It all depends on the cause, if it's something like graves then carb. will be the frontline treatment. Has your GP prescribed a beta blocker in the meantime? Propranolol is great at controlling the effects of hyperthyroidism.

[Jemimapyjamas]

Yes, I've got Beta Blockers for the meantime

[KurriKurri]

I've got Graves - and intitially was treated with carbimazole and propanolol. I didn;t have any particular problems with carbim. However they don;t like you to take it for huge lengths of time so after about 18mnths on it I had radioactive iodine treatment - which zapped my thyroid and now I;m on thyroxine for life.

I have had problems getting the dose balance right - I;m on six monthly blood tests at the moment and have had a year without adjustment which is the longest I've gone.

Since the RI treatment my mood and my weight has fluctuated a fair amount - I;m somewhere in the middle at the moment - but my weight has been both too high and too low (lost weight rapidly as too much thyroxine) but I find the weight changes can be very quick - so by the time they've done the tests you can easily have put on a stone and a half (or lost it) which is a pain.

I'm on anti depressants to help with my mood which again can fluctuate and I can get very low (but I do also suffer from depression and sometimes it is confusing as to what is actually causing the low mood - thyroid or depression).

I have to say in general - I manage OK, but I've never felt 'right' since I started having thyroid problems - I never feel totally well and I do get breathless and tired still. But again I do have other health problems (cancer treatment with many side effects) so may not be entirely down to thyroid.

I hope you get on OK and your symptoms settle with treatment - Iknow some people who are doing fine on their treatment and don;t have any probs and have been on the same dose of thyroxine (after having their thyroids zapped) for years. I think I've just had probs hitting on precisely the right dose - no reason to suppose you will have probs

I would guess your diabetes sometimes makes it hard to work out what is causing particular symptoms ? And you will have to be vigilant until you get used to what may be making you feel rubbish. Have you had a referral to an endocrinologist yet ? They will talk over the best treatment options bearing in mind your diabetes. Good luck

[KurriKurri]

Ooh sorry - huge long post - I rambled on a bit !!

[Jemimapyjamas]

KurriKurri, your post was great and just what I asked for, don't apologise!

Im finding the more reading I do about it, the more depressing it sounds. I am generally quite positive and have never had any issues with being diabetic (my main bugbear with it now is that, due to the rise of Type 2 and it's associations, people think I have given myself a self inflicted illness which I hate) but it also, as I control it well, plays a large part in my life. And I don't want to have something that can a) affect it and b) just another medical condition to manage - I feel as if I do my fair share!

[devilinmyshoes]

My hyperthyroidism was masked for a while by marathon training and pre existing mental disorder (bipolar), and disordered eating. My heart rate was consistently elevated which can be a sign of overtraining, I lost a couple of kg of muscle, I took more and more 'time off' exercise but I had the worst DOMS particularly in my quads, also upper arms. My mood felt like it was going up but I was in a constant state of apprehension and often woke with my heart racing, galloping, and my fists and jaw tightly clenched. Had a pretty bad tremor and constant stream of soft 💩 but we had increased my lithium to bring my mood down and these are known side effects of lithium. Every so often when they check lithium levels (once or twice a year) thyroid function is also tested and one day I got a call from my GP asking me where I was and could I get to the surgery within the hour 😮 I was so scared!

GP had already spoken to endocrinologist and they started me on carbimazole and propranolol right away, she examined the (tiny) goitre that I'd thought was a sore throat from vomiting (on purpose, but I could not stop eating and I didn't want to get fat 😳). Went for a scan to check for nodules or whatever, had none of those, they tested for absolutely everything and endocrinologist decided it was 'probable' Graves although having the antibodies isn't diagnostic, it's only really the eye involvement which confirms it I think. Carbimazole kept going up, I struggled to take it, radioactive iodine didn't work because lithium suppressed its uptake. There was a period of indescribable fatigue, I couldn't walk a mile I was so out of breath, then I couldn't walk a quarter of a mile. I fell asleep in the gym. I couldn't get up off the sofa sometimes, it was like something pinned me there. This didn't last long at all! I piled on a whole stone of fat really quickly but it did disappear almost as fast.

Things that helped me:

The dreaded carbimazole (it's absolutely fine)
Getting as much rest as possible
When people suggest you will feel better if you fight the fatigue and go out/do something tell them to Fuck Off
Eating lots of everything
Fancying my endocrinologist- don't think have ever missed an appointment at thyroid clinic with him 😃

In some ways I'm better than before now? It's about 3 years on, I've got my head round the fact that I could need the surgery at some point (lots of people go into long term remission but they have no way of telling who yet). My running fitness is back, my only grievance is that I never experienced the heat intolerance and continued to be painfully susceptible to the cold throughout.

[devilinmyshoes]

What a lovely long post! 😃

[allegretto]

Does it always cause weight loss? I have a lot of breathlessness, fatigue and hair loss but am definitely not losing weight!

[devilinmyshoes]

Some people gain weight, some stay the same. What I couldn't understand was losing muscle instead of fat, why would it do that? Arghhh!

[Jemimapyjamas]

I can't tell if I've lost weight due to it, or due to the fact that I've pretty much knocked booze on the head. In a way, I would like to think it's the latter but, shallow though it may be, putting any back on would really upset me. I've lost 16lb since the end of June so it's not fast, but steady and healthy. Or at least I think it is

[devilinmyshoes]

Nobody I know with hyperthyroidism (surprisingly quite a few! My mum, my aunt, friend of a friend) is heavier post treatment than they'd like to be - we are all pretty lean and active TBH. They give you loads of thyroxine if they have to, my mum's thyroid burnt itself out but she went a long time untreated and undiagnosed and it caused atrial fibrillation which >>> emboli and then a stroke 😮 unfortunately she's been left with complications but this is rare these days but she's never been fat!

It is quite a horrible thing to have in the beginning but so treatable and you do get back to normal it doesn't really help that a huge part of it involves everything being in overdrive so you're in a heightened state of anxiety generally but it does all even out. They take great care of you until thyroid starts behaving itself and then it's just regular unobtrusive monitoring.

[devilinmyshoes]

Unintrusive?

[devilinmyshoes]

I was devastated about the weight gain, I can't lie, but it went away again so quickly and I still seem to have a slightly overactive metabolic system as a whole which I'm relaxing into. It's easy to say but try not to worry about that, the body has lots of repairing to do and that needs fuel.

[Jemimapyjamas]

Typing on phone so will be brief - are you saying I am just as likely to lose it easily after putting it on? I can't do anything like carb cutting anyway as I'm diabetic (type 1).

[devilinmyshoes]

You might not gain an ounce, I only have my own experience to go on of course and I was tackling disordered eating along the way at the same time. I just haven't seen anyone come out the other side of hyperthyroidism fatter than they went in even if their weight fluctuated a bit in between.

[serialtester]

Some people I know on carb have regained the weight lost when in thyrotoxicosis. I'm not on carb but have lost 1.5 stone over the past 12 months despite eating like a bastard. I echo the pp who says that everything is in overdrive. It's a really hard thing to explain to people but having an excess of energy/being a bit manic means that i need to force myself to rest more. Hyperthyroidism is a strange thing. It's not well reported/known about and it makes you feel very peculiar.

[serialtester]

Ps, my T4 Levels are now just within the normal range - my endo has said that I've been left with a funny thyroid. So, I still have the tremor, weight loss etc... but because my 'numbers' are normal there's no treatment for me. And while I'm moaning if one more person tells me that I'm lucky to be thin I'll lamp them in a thyroid rage!!!

[Thecharlady38]

Hello, I know your post is several years old now, but I hope you see it and can give me some reassurance! Like you, I’ve been diagnosed with Overactive Thyroid, and am really concerned about weight gain with the treatment. I’m reasonably stoic about the fact that I have a condition that needs medication, but I am so worried about the weight gain! Did it amount to a lot or a little? Will it be temporary or will I have permanent weight problems for ever more? I’ve yet to see the Endo and have started on Carbimazole 5mg, and Propanolol 3 times a day. Hope you can help!