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tell me about your adventures with hyperthyroidism?

(48 Posts)
PoppyShakespeare Thu 12-Mar-15 09:14:13

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?

Clarella Thu 12-Mar-15 11:58:46

I'm hypothyroid so not quite the same but I found joining the British thyroid foundation very helpful indeed. The newsletters share lots of stories and they have many volunteers you can call to find out more about lots of things. Hugs, it's not a horrid disease. Sadly all thing thyroid take time, patience and lots of gp visits - you should be under an endo though? Have they been helpful?

Clarella Thu 12-Mar-15 11:59:13

*its a horrid disease

merrywindow Thu 12-Mar-15 12:07:09

Probably not much but just keep taking the carbimazole. It works by building up in your system over time. It took me about a month to see any improvement, by three months I was much better, and I was pretty much back to normal by six months. I have been off meds for several years now with no ill effects (weaned off gradually). Be warned you must not give blood until you have been off carbimazole for two years. Hope you are seeing an improvement soon.

PoppyShakespeare Thu 12-Mar-15 13:41:11

thanks both, I will look at the british thyroid foundation clarella, don't see the endocrinologist until towards the end of April which feels ages away (but we only picked up the overactivity by chance a few weeks ago)

that's encouraging merrywindow thank you, am glad things went back to normal for you - was it Graves or some other thing? smile

PoppyShakespeare Thu 12-Mar-15 13:55:07

british thyroid foundation site looks great, the first thing I clicked on was a true story of hyperthyroidism and a successfully completed marathon (was just getting into marathon training when I found out)

Clarella Thu 12-Mar-15 14:44:24

Ah good, as I say, time is the thing with thyroid stuff.

Maybe ask about ferritin levels; i recently found out going hyper or hypo may affect them which then may hinder muscle recovery. Bone density can be an issue too but your endo can chat to you about that. Keep taking the medication and checking in with gp.

Maidofdishonour Thu 12-Mar-15 20:38:31

I was diagnosed with Graves disease 8 months ago and I have been on Carbimazole ever since. I lost 1.5 stone and I have kept most of it off which is wonderful. I was also diagnosed as Coeliac around the same time so I don't know if I felt better soon after starting the Carbimazole or whether is was because I went gluten free but I definately saw an improvement within 2 months. My endo said that the Graves should burn itself out if I stay on the drug for 18 months but I have read that the relapse rate is very high.

merrywindow Thu 12-Mar-15 20:43:17

No idea what caused it, they never mentioned graves. I never saw an endocrinologist as far as I remember (it was 14 years ago, so I may have forgotten!), just went to my gp in a state, had some blood tests and was told it was hyperthyroidism and put on carbimazole straight away. Still have to have a blood test once a year - had to have them very frequently when adjusting the dosage in the early days. It sounds as if you have it more severely than I did. I feel for you, it is not much fun is it! Thank god it is treatable these days.

PoppyShakespeare Fri 13-Mar-15 10:57:27

thanks for the stories of positive outcomes smile I don't want it to be Graves' although that is most likely (in general and with family history) my mum had a stroke caused by AF caused by poorly controlled overactive thyroid so that is a bit scary - the levels have risen quite aggressively in just the past two weeks so it's good that they're on to it

even at this point I don't think I would have presented to my GP with my symptoms because they're all so easily explained by other things, it's fortunate that I have my T4 and TSH checked every 6 months (ironically because am on a medication that is known to often cause thyroid underactivity but very rarely can provoke this)

PoppyShakespeare Tue 17-Mar-15 13:07:50

just bumping because feeling v sorry for self

would really like to know how people managed daily life/exercise etc it all feels a bit impossible to live with sometimes

Clarella Tue 17-Mar-15 17:04:02

Big hugs - I've experienced a little of it as recently was on too much thyroxine. What are your main symptoms?

Whilst recovering from major muscle loss as a result of long term too little thyroxine them swinging to too much I've seen an nhs physio. She said that she'd treat me more like a CFS/ me patient while muscles were recovering and talked to be about pacing, flare management etc. in fact, I think this side of things is sorely missing from thyroid stuff; I wish it had been included in the info I got years ago as sometimes it can take ages to get things right. I'll post some links in a bit.

Are you still at work?

What do you struggle with most?

Clarella Tue 17-Mar-15 17:12:12

I'm not sure it entirely matches your situation as sometimes you've too much energy but it's wearing your body out. So it's worth understanding the concept

This helps to traffic light your day - again I know you may be finding it really hard to actually rest and sleep but again I think the concept is quite helpful, especially during recovery.

Have you tried phoning any of the volunteers listed on the BTF site marked over active thyroid for advice?

PoppyShakespeare Tue 17-Mar-15 17:19:15

thank you, I really appreciate your message and sort of know I'm being a bit pathetic but at the same time I can't seem to help it! don't work as such but my life is very physical with 3 horses and running and gym and dogs and yoga, is incredibly depressing to be getting out of breath simply going upstairs sad

I've been a bit hysterical about the loss of muscle and bone density, am just generally being much more irrational and emotionally unstable about things, not sleeping barely at all, the palpitations and anxiety are quite extreme at times and then there are bouts of utter apathy where I could lie down and stare at the wall for hours - it seems so debilitating for something that, symptom by symptom, seems quite vague and mild to describe. I can't stop eating but I'm still losing weight but it appears to be almost all lean mass, which is fucked up. Why would it do that!

am grateful it was picked up in a routine test and that we know my baseline (usually t4 is around 12, the first test this year came back at 36 and within a couple of weeks it rose 'dramatically' but I don't know what it is exactly) because I don't know what I would think was going on otherwise?

PoppyShakespeare Tue 17-Mar-15 17:20:50

I missed your other messages, will explore those links

funnily enough I was hovering over the contacts on the BTF telephone list, there are a couple of Os there, but I knew I would just cry and cry

don't even know why it is so upsetting! I just can't help it blush

PoppyShakespeare Tue 17-Mar-15 17:59:53

thank you for those links, they make a lot of sense

actually before I knew what was going on I had noticed that not only were runs much harder work but I also needed lots of time to recover and could do much less than usual in addition

this could be really helpful while we wait to find out what's causing it and get it under control, thanks

Clarella Tue 17-Mar-15 18:35:46

Poppy actually reading your post makes me realise I've been suffering from too much thyroxine as you describe so much of what happened. I lost loads of muscle. I was on sertaline which seems to mess with thyroxine.

You've a lot on - no gym imo. You need to look after your muscles. Prioritise your energy out put. Clearly horses and dogs are nec but ask for help. I believe hyperthyroidism can cause low ferritin which will not help muscle recovery.

Yes to the tears. I've always sobbed all over anyone I've spoken to when struggling with thyroxine issues. Either way it's extremely distressing as I believe we innately know there's something wrong, and it's really really hard to keep up with life. I've had mh issues simply due to this - going through a phase where my thyroid got worse and I needed a dose increase but didn't realise till damage was done. Then frustratingly waiting to get better - I too tried to keep up with exercise etc; it was depressing to feel I couldn't. I think we sort of feel we have to keep going for sanity but then our lives demand it.

Like CFS/ me it's quite an invisible disease. People look at me (I never get over weight, I actually loose weight when underactive but it's muscle ) and think I look great, young fit, no need to moan (people at work) my work is v physical; teaching challenging children with ASD but also managing a team and doing lots of physical sensory stuff then up all night writing reports. I've just been told I have hms but in all honesty I'm not sure I'm that bad unless the thyroid stuff has got out of hand.

Are you on beta blockers?

Is there anyone you can chat to about trying to manage your life at the moment - remember this is only for now and you will get better - but you need to cut back and have a kind of daily plan to try to be kind to your body and feel like you are in control.

It will get better.

Clarella Tue 17-Mar-15 18:38:00

Yoga could be helpful to continue as long as you are gentle and don't over stretch joints etc. I found it can be a good benchmark to help you judge your fitness level in terms of muscle strength and the routine and familiarity will be very helpful. Only if you feel you can though.

Clarella Wed 18-Mar-15 11:21:53

Hi sorry to keep messaging - I've just looked at my very good thyroid booklet by the BMA. Ive brushed over the hyperthyroid bits in the past but looking again I think you'd find it really helpful, not least as there is the possibility you may become hypothyroid in the future (not sure if you know if you have antibodies or not?) it's by Dr Toft and on Amazon.

However, as I've said, a lot of dealing with thyroid stuff is quite CBT ish - understanding pacing, flare management, being aware of limitations but finding benchmarks of ability - eg if you go to a regular yoga class you could use it to track how easy or difficult moves are.

Regarding exercise - I've been going to the pool and sometimes simply treading water for 15 mins. I know know I'm getting better as I managed several lengths one after the other of front crawl. So this is my benchmark - showing me I'm improving. But, it's important to view examples of what you can't do as indicators of your current fitness level and then adjust how much you try to do to that - I hope this makes sense? Being mindful of your body's current capabilities / limitations.

It sounds obvious but it's taken nearly 20 years of repeated bad phases to work this out/ have it explained to me.

It's a system wide illness messing with everything - mind included. But invisible to othershmm and ourselves sometimes.

PoppyShakespeare Wed 18-Mar-15 11:24:38

yes gp gave me betablockers and the carbimazole straightaway, am used to making adjustments around my bipolar disorder (it's just a shame that my main tools for managing that, a lot of outdoor activity and a good night 's sleep, are evaporating rapidly!)

sorry it has been a long and sometimes tough road for you flowers

it sometimes feels like the end of the world shock but today am quite philosophical about it, glad the scan is early next week as that will be an important step towards getting better won't it

PoppyShakespeare Wed 18-Mar-15 11:26:06

oh we x posted!

am enjoying the messages so please don't apologise!

PoppyShakespeare Wed 18-Mar-15 11:42:11

I'm not sure how to assess my baseline really, one minute I'd completed a half marathon with lots of energy to spare and it was all good - then gradually around Christmas time (and I thought it was because of the cold weather) it was hard work, I started vomiting during runs, mad shooting pains that I thought might be psychological hmm

at the moment I can run 4 miles without major difficulty and I'm only doing that twice a week (at best recently before the thyroid madness crept up I ran 5 days a week, with a long run of at least 10 and 20-25 miles across the others)

Clarella Wed 18-Mar-15 12:09:50

That's your base line for now, but you'll get better. However if 4 miles x2 a week is hard, cut back, that's your new baseline.

It's hard to be philosophical at times - and funny you mention bipolar as my friend with bi polar and I have compared conditions and there's similarities in that I can go up and down; I get carried away with how much energy I have when well and it affects my mh when I'm running out of energy.

I recognise the need to manage your bipolar with exercise - apart from it been really good all round I think it's also feeling in control of something, which with thyroid stuff you're often not till in the know about the condition, what's happening and on top of medication. But then I guess it's similar with bipolar too!

However, it'll be doing stuff to your body which will take time to recover from physically. When better id get gp to check Vit d, ferritin and b12 as I believe all can be affected by it and optimal levels will help your muscles, nerves, and so mental health recover better too.

Yes scan will help understand more. Patience is a virtue, take each day at a time, and as Douglas Adams says Don't Panic :D (says me.....)

I think I'm able to recognise that this shit happens for a reason and I can learn new shit from it. Which I have, not least that I've got hypermobility syndrome but also I've bizarrely learnt how to do proper front crawl just by watching a guy swimming whilst I was sitting in the sauna (not swimming) grin

Lightattheend Wed 18-Mar-15 20:15:59

Hi, i have got a date for radioactive iodine treatment in April. I've been overactive for over 18 months and need to be on 60mg carbimazole to feel good. I found it very tough at first, had run a 10k then couldn't run at all! Very out of breath. I have learned to be patient, but it is not easy. Hang in there, it seems alot more common than i ever knew. We now have to work out how we manage the children (primary school age) whilst i am a risk to them! I'm going to get more specific advise tomorrow from the hospital, specifically when/if I can safely drive them. Hope you feel Ok tonight x

PoppyShakespeare Wed 18-Mar-15 21:27:43

that's great about front crawl clarella! whenever I've had running injuries I've used them as opportunities to learn new things (belly dancing and crochet last time) haven't quite got the positive attitude about this yet

hi lightattheend good luck with your treatment next month, hope you are not too radioactive for too long! it sounds so drastic to me but my gp said it is often easier to nuke it and replace the thyroxine than to use antithyroids - do you have graves? did you gain weight with the carbimazole?

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