tell me about your adventures with hyperthyroidism?

[PoppyShakespeare]

I think I particularly want to hear happy stories of a swift return to normal functioning, am used to being pretty active (riding, running most days, gym etc) but am feeling miserable with debilitating muscle soreness on a fraction of my normal exercise. Apart from taking the carbimazole, stuffing my face and waiting patiently to find out what's causing it (radioactive iodine uptake thing in a couple of weeks) is there more I could be doing to feel better?

how did you find out you had it light, initially what made you go to the gp and then did the scan show it was graves?

annoyingly it seems to be just one of those things that they don't really know what causes it as such, although am sure stress is a known factor - does anyone in your family have it? graves is in my family and nobody got fatter long term, although there might have been some weight gain initially everyone seemed to find it easier to maintain weight once everything was sorted out and they felt well again

have had a bad past year or two of eating disordered behaviours which made me wonder similar things at first, that I had done it to myself somehow, but we've always checked my thyroid at least once (usually twice) each year for well over ten years because I'm on lithium (which is well known to cause underactivity and has even been used to treat overactivity, but can very very rarely cause that too) and it's always been fine until February this year and now it's on overdrive

in a weird way it is actually helping at the moment, I feel like my appetite is justified and that my body just does need a lot more support!

Gosh light I didn't realise it was such a major treatment - though the term 'radioactive' should indicate that!

With regards to managing on thyroxine you do have to learn to manage it - key things are taking it correctly, lots of other things affects it's absorption etc, and learning about your Tsh levels and what's right for you. Ferritin levels, b12 vit d and folate are also important but not really mainstream habitual gp stuff yet. I'm speaking from very recent experience regarding needing good ferritin levels to feel well. I've been extremely unwell with them at borderline levels.

The other thing which REALLY helps is getting fit and strong - I'm convinced from 18 years of this that the more muscle I have the better the thyroxine works. I've found some biology to explain why this could work , but not least as the stronger you are the more you're able to weather mild dips or tweaks in thyroxine. Bounce back quicker so to speak, though only if ferritin etc is good too. There's some research going on at the mo into impact of exercise on hypothyroid patients.

It's hard getting fit when waiting for t4 levels to stabilise though. I wish you lots of luck with your treatment.

Graves - I think it's the antibodies? Nobody really understand autoimmune stuff, and fewer understand thyroid stuff sadly!

Hi poppy, I had symptoms I didn't understand. Hands trembling, heart racing, not sleeping, felt anxious. Job was stressful at the time and thought my symptoms were job related. Saw the nurse and had ECG and blood test, then diagnosed. Often wonder if stress was a factor but consultant said not. It was the first thing i asked him as I'm still in the same job.
Think the hardest bit will be not touching the children, going away for few days so i don't forget and get too close!

going away sounds like a good idea, I'd have to do that (no small children at home but have cats and dogs I would not be able to not touch, they just climb all over me anyway - horses too although luckily they don't usually get on my lap ) how long will you be away for?

I thought mine was 'just' my mood, I had the anxiety (which was a bit unusual in that sometimes I felt I couldn't leave the house but I didn't know why) and along with everything feeling really really difficult physically, and this insane tiredness, assumed I was depressed so we put the lithium up which always gives me a tremor. So I had no reason to suspect anything else really.

They gave me some diazepam yesterday and already feeling a lot better on it, managed to run a bit further today which is a huge boost.

I did post last night but it didn't work, couldn't type it all again! So glad you ran further poppy and feel better for it. Trying to organise how long I stay away for this weekend with family. I think just the first few days, then I just avoid close contact when they are not at school. Dh needs help as works long hours (cannot shorten day, type of work). Hopefully the time will pass quickly, but I know it will drag and I will miss my normal routine. Hopefully it will be worth it!

My consultant said stress was a known factor and could certainly trigger this disease starting, flip the switch if geneticly the disease was there in your family history.

I cycle, walk and used to do body pump, spin if not out cycling

Found yoga hard die to thyroid

Time is needed and about two months, your thyroid is the only organ to store and it takes two months for the store to be sorted.

What level of carbimizole are you taking?

Do you know your resting heart rate and your Max heart rate?

Sorry, I may not post for a while, dad admitted to hospital yesterday, hopefully he is getting better but need to support my mum. Lost my bro 10 months ago so she needs my time. Xxx

oh no light I hope your dad will be ok, what a horrible time your family has had thinking of you and your mum

hi ivy thanks for your message, yes is strange how yoga is more debilitating than running at the moment but the yoga studio does restorative classes for the ill or injured yogi where there is more lying down than actual stretching so these might be therapeutic

am supposed to be taking 20mg carbimazole but having huge psychological problems taking it (have finally admitted this to gp and psychiatrist, they will liaise with the endocrinologist and we will sort something out) scan today should help with some answers, a treatment plan that I can accept etc

my resting heart rate was very low (long distance running) under 50 and it's now 80 so have propranolol (40mg x2) and diazepam (10mg up to 3x a day)

do you want to say why you have huge psychological problems taking it? maybe one of us taking the drug can help. i have been taking it now for 4 and a half years - started at 40mg and have been down to 10 but atm on 15mg

I think the yoga is problematic fro me as it makes my blood rich to my head and then back again - which makes me feel ill and did so before diagnosis

I can't take propanadol as am asthmatic so they had to take me off it after three week and just wait fro the carb to kick in after 8 weeks

I will say that as it did kick in it was good to feel better, so much better.

I just get ridiculous muscle soreness the next couple of days after yoga, never had anything like it and my life pretty much revolves around running and the gym etc

I think I'm worried about weight gain with carbimazole which is probably ridiculous, because I don't want to be ill and I'm already eating almost 3000 calories a day. Also maybe because I didn't know anything was wrong with me, I wasn't looking for an explanation or treatment I just had a very panicky call from my GP after a routine test. So maybe it just hasn't sunk in? But I feel really resistant to it for some reason I can't talk myself into it at all

The carbimazol isn't going to make you gain weight, it will regulate your body so it works correctly. As your body starts to regular your appetite will diminish and you will feel full and satisfied at the end of a meal and not actually need more food till the next meal time.

I hadn't realised anything was wring but got to the stage where I couldn't drink a hit drink as I couldn't relax to let the hot liquid go from my mouth into my throat.

If your life revolves around gym and running then the sooner you take the carbimozol the sooner the running and gym will be easier to return to

I missed the gym and cycling and couldn't wait to get back to spin etc so I know what where your coming from.

Thanks ivy, I hadn't thought of it like that, makes a lot of sense. I think I'm also scared of it going underactive, that sounds so much worse, but my feelings are all over the place and I can't trust them at the moment!

Hi poppy, if the yoga is causing pain like that definitely don't do it, however you'll know you are recovering when you can do it without such pain iykwim?

I believe medically speaking it's harder on the body to be overactive. It can affect heart, muscle and bones quite badly. I don't think you'll get fat/ put on weight either but it's going to take a while for everything to even out and recover, balance out so to speak.

You will feel it within yourself when this starts to happen.

I do not ever have a weight issue when underactive, the opposite actually, and have learnt that keeping muscles in top condition, doing cardio and strength stuff helps to stay fit and improves the way my body used the thyroxine.

The only real issue anyone underactive has is making sure they're on the right level of thyroxine which often is got wrong by gps. The other thing which isn't general practice but I can vouch for as many here on mn can is that when on thyroxine you need to have good ferritin levels, b 12, Vit d and folate. It's not that hard to manage the b12 d and folate through diet and Vit d drops but the ferritin can need proper attention to get anywhere. I've been reading mns posting ferritin needs to be over 70 (50 is borderline, don't usually treat til a lot lower) but it is utterly my recent experience. Personally I think it's simply down to muscles need to have good iron levels to recover and women can loose through menstruation.

You are not underactive though and not everyone swings that way, the anxiety side of things is horrid but will all get better as you feel better and muscles start behaving.

You are anxious about taking the carbimazol because you are hyperactive and that is part of the issue, if you take the carb then you will become far less anxious - which is hard to believe when you are anxious.

But you will feel better and your body will slowly return to how it should be operating and you appetite will diminish along with the pains in your legs etc and your begin to feel less anxious and realise taking the carb makes you feel so much better. Just don't expect an over night experience of feeling well, but I can azure you you will feel better

You need to be kind to yourself and allow yourself to get better, so be gentle and you will reap the benefit of the medication

thanks clarella, will look into supplementation a bit further then- I do suddenly feel a huge drive to eat lots and be healthy so I'm definitely in the mood for vitamins and minerals, have been reading about l-carnitine too

this is probably a how long is a piece of string type question but am wondering how long it takes to hear outcome of a thyroid scan - do I wait until I see the endocrinologist at the end of April? That seems AGES!

Oh I missed your post ivy, I hadn't thought of that either - I'm taking the first one now

have only just seen it is meant to be twice a day

Stick with it poppy! You'll get there.

I think I meant more that it might be worth checking things like iron when you're sure you're getting better via gp. I have seen one research paper which said ferritin can be affected by either hyper or hypo and certainly muscles need iron

oh I see, yes I will ask about those things, thanks - I don't think my gp sees more than one new case of hyperthyroidism a year and not many ever see one on lithium so stuff like that might never cross their minds in all the excitement!

am shockingly tired today, think I will have to spend most of the day lying down :(

thinking about you light hope all is ok

Hi Poppy, I also struggled with the thought of taking Carbimazole but I didn't really have a choice and I have felt fine on it. I would prefer to stay on it long term rather than have RAI or surgery. My endo says that the Grave's will hopefully burn itself out.
I was told to take vitamin C whilst on Carb. I also take selenium to prevent thyroid eye disease, vitamin D (endo says levels must be over 100 with Graves) and magnesium for my bones. I have never found a calcium tablet that I can swallow but my diet is rich in dairy products.

thanks maid, good to know am not alone :) wish I could check my own levels instead of waiting and possibly taking too much carbimazole because have been feeling better for a while I think, but life is much less active and I'm also taking general vitamin and mineral supplements which might help

Anyway just wondering what to expect at first endocrinology appt next week?

Hi. I'm a bit late on this thread but wondering how its going PoppyShakespeare?

I discovered that I had a hyperthyroid issue around the same time last year. I only realised that something was wrong when running a 10K race with an abnormally high heart rate of around 175 the whole way!
So I went straight to the doctors and was put on betablockers and carbimazole. But I soon dropped the betablockers! A year later, my carbimazole is down to 10mg a day - and I have been skiing all winter and now back running, feeling good!
I started blogging with my daughter (26) who has kept me going over the past 12 months by encouraging me to run and compete in the Rock 'N' Roll Half Marathon in Las Vegas last November. We started The Run Diary together (www.therundiary.co.uk) where you can read all about how I ran despite doctor's orders not to!
www.therundiary.co.uk/viva-las-vegas.html
Anyway, good luck to anyone with hyperthyroidism. Keep positive. It WILL get better!