[cathycnm]

#1072053

Emily – My understanding is that most thyroid storm is related to some sort of physical stress – such as trauma, surgery, etc – and less dependent on your TSH. However, the risk goes away once our thyroid is under control.

Hyperthyroid makes up way more sensitive to adrenaline – so it is understandable that you might feel more fear or anger. Panic attacks could definitely be related. I would only suggest doing little things to relax. About a month ago, I knew I was getting some hyper symptoms again – my cats knocked a favorite plant and pot off my table. The pot broke. I was seething – that is the day I said "I gotta be hyper again". I decided to take the afternoon off from my studies and went to a neighboring town to look around and go for a walk. I found a cook new pot – and came home much more mellow than I started my day. I knew that I had to take care of myself – my poor cats, they just looked up so confused when I was yelling at them. It is often the simple pleasures that bring us to a better place while we wait to heal. Cathy

[ely2009]

#1019502

Having a rough day….

What are some tell-tale signs of a thyroid storm? From others’ stories, I think I’d know if I’ve had one – so i don’t think I have. But I do think I’ve had panic attacks. Part of my anxiety is wondering if I’ll ever have a thyroid storm – it’s like I’m mentally just waiting for one to happen. Then I feel my anxiety level rise – and you know….heart races, trouble breathing, sweaty, all the other fun stuff.

My TSH level was .37 when I was diagnosed about a month ago. Been on methimazole (only 2.5 mg/day) for almost 4 weeks. I can see some progress; I’ve actually had some "good" (but not normal) days mixed in with the not-so-good ones. Is a thyroid storm dependent on your TSH level?

Sorry to complain. I try really hard to stay positive. I usually burden my very supportive and patient husband with my anxiety. But I also need some wisdom from your experiences as well.

Thanks again!
Emily

[DianneW]

#1072054

I’ve heard lots of people say they had a thyroid storm, but if you are alive and haven’t been in the hospital emergency room for saving treatment, then you haven’t had a thyroid storm. A thyroid storm is an extreme emergency, and people die from it sometimes even when they are given emergency treatment.

What people sometimes confuse with thyroid storm is a spell of really high thyroid levels that is anxiety-provoking and which causes rapid heart beat and palpitations; perhaps even a raised temperature. Probably many people with high thyroid levels have experienced this, and it’s scary and unpleasant. I went through some spells like this following my RAI and frankly, wondered if I might die one evening. I called the doctor who was on call for my endo, who told me it couldn’t be my thyroid because I didn’t have a thyroid anymore because I’d had RAI (but I was still hyper at that point). And he was a doctor, so what did I know about it? So he wouldn’t listen to what I said, and I was left without help. I lived to tell about it though, obviously.

So as bad as they feel, episodes like that aren’t thyroid storms, though people often think they are. We have a few people on this board who’ve had actual thyroid storms (Billyb, Hyperm, for example). So can those of you who’ve had a T.S. tell us how you knew you needed to seek emergency treatment? What was the difference between the spell like I described and the one you had?

[hyperm]

#1072055

Hey,

Panic attacks – horrible. Its funny as like you when I was first diagnosed and given a piece of paper saying "THYOID STORM WARNING SIGNS" I started to read and to be honest almost passed out with the panic – so that little piece of paper was put into my sock drawer and not thought about – but like you it frightened me. I have had panic attacks for years and they are no joke.

I did have a TS and there is a huge difference. Like Dianne said some people are perhaps very overactive and have horrible symptoms. I had a running tachycardia for days before the storm took off – my heart rate wouldn’t settle even in sleep and I had a tremor so bad it looked as though I was a heavy drinker.

My symptoms with the TS were;

Tachycardia – racing! heart rate between 166- 200
what felt like massive palpitations as though my heart was going to burst.
excessive sweating – you would have thought I had thrown a bucket of water over me
uncontrollable tremor
chest pain
diarrhoea
I was crawling on the floor while my mum called 999 –
and then finally collapse at home.
My blood pressure was very low and my heart rate escalating. They thought they were going to have to shock my heart.
I collapsed again in the hospital and awoke with the resus team around me.

I appreciate that panic attacks make you think you are dying but with a thyroid storm you are to ill to panic if that makes sense? Days before I said to my hubby that I felt as though I was going to collapse. If in doubt get it checked out but for me it wasn’t a matter of wondering – I became critically ill and my only option was dial 999.

My endo said my levels went from going off – perhaps air borne to going into orbit in the space of days! My GP said she hadn’t seen levels go like that since her days as a student. So yes your levels go crazy
HTH

xxx

[ely2009]

#1072056

Thanks for the info.

Dianne, What you describe is kind of how I feel at times. I used to feel it all the time (before the meds). -now just once in a while. I keep asking my husband – how will I know when it’s a true emergency? Like you, hyperm, he says I’m SURE we’ll know.

So tired of the anxiety. Bllod draw this week and appt with endo next.

I hope he sees some progress. I thnk that will help me.

Emily

[hyperm]

#1072057

I know the experiences you are having and what Dianne explained too as I am having them just now and had them when I was first diagnosed – they are scary and horrible!

However, I knew the difference straight away – I felt critically ill and knew I needed to be at the hospital asap – whereas with the symptoms before I felt so ill but could get through the day with them.

Its always best to be wary of these things though but worrying about them doesn’t help – as I said I just put the piece of paper away as i knew how anxious I was getting over it and had to think "well if it happens there is nothing I can do but just try to get through it and let the medics do their job" My mum has a great expression which helps me "Let go and let God" i.e let Him deal with every moment and just trust in HIM and I had to do that and even every day at the moment I have to think about that saying!

Take lots of care and I hope there is an improvement in the bloods as at least you know there is some kind of progress.

m xxx

[ely2009]

#1072058

Hyperm,

That was my grandma’s expression also, so I’ve tried to keep that in mind. It’s so hard to give up control though…

I just want to feel normal. ” title=”Smile” />

Thanks for your help.

Emily

[SharieS]

#1072059

Hi Emily,
I was diagnosed around the same week as you, and have been on Methimazole 30mg daily for 4 weeks. I have also been worried about having a thyroid storm, and asked my endo on my last visit if I should be concerned because my FT4 was off the charts….very high. He told me that he has a 1,000 thyroid patients, and has only had 1 thyroid storm. I felt much better just hearing that. Like you, I am starting to feel much better now that I’m on meds, but I have to say that I have some bad days still, where I feel quite anxious for no reason. I hope you start to feel better soon.
Sharie

[hyperm]

#1072060

Emily,

You use my expression! I just want to feel normal too – its rubbish when you feel as ill and as low as this but believe me you will get through it! I took my TS post partum so try not to worry.

The anxiety which comes with this disease is terrible. My midwives were cracking up with me as I was convinced (after witnessing my sister in her home have a massive heamorrhage after her twins) that I was going to heamorrhage after the birth of my last little boy – to the point where I was never off the toilet and calling the hospital constantly. It was all irrational but I genuinely couldn’t help plus the fact there was something wrong in that department and I was in hospital 4 times after my little one so I do know how you feel. Anxiety is a horrible condition and unless you have had it then people just think you are crazy.

You will start to get some control over your health again once your bloods start to settle down – in the meantime lean on us!

M x

[ely2009]

#1072061

My husband laughs when I say thinga like "in my rational mind, I know that I’m proably going to be OK, but in my "Graves" mind, I think I’m going to …." Usually I know what I’m fearing is irrational, but the anxiety part of me takes over. I’ve been taking my heart rate all day and it’ hasn’t been above 72. But I still keep checking it….

Emily

[DianneW]

#1072062

Emily, I love that about your "rational mind" vs. your "Graves’ mind" and also the image of you checking your pulse. I think I checked my pulse constantly for the first five years after my Graves’ and I still do it more often than most people do.

Of course now, my pulse is too slow (usually under 60) even though I’m supposedly euthyroid. Go figure.

[Shell5716]

#1072063

not sure where to even begin … I too have some major things goin on that it seems, no one can explain at this point … I had my thyroid removed 9 yrs ago, but I am still experiencing many of the things I did before it was removed … AM I REALLY CRAZY, AM I LOOSING WHAT LIL MIND I HAVE LEFT????

I am so very tired of feeling this way … it has honestly interfered with my everyday life … I have an appt with a new doctor on the 30th and I pray that he will be able to help me live again …

So glad there are others who really understand!

[ely2009]

#1072064

It’s horrible to feel that way, Shell. I’ll say a prayer that your new doc is helpful. I go to the endo today to see how my labs are – so I’ll stick you in my litany of prayers on my ways to his office.

Sometimes all you can do is pray and hope – and even when it seems like not enough, it is worth it!

Emily

[Steve]

#1072065

Ha! Ha! the "rational" versus the "graves" mind. I had that experience 6 months ago, the disease went into remission (or so my doctor thought) and then came back with a vengeance. The T4 levels went sky high while I was almost off the meds and I started having panic attacks:
Simultaneously one part of my mind had complete and irrational fear of death (total fight or flight response, I had to have my wife drive me around in the car, like having to escape the city due to impending doom, being stopped at the traffic lights was terrifying) while another part, my rational mind, was helplessly observing this and worrying that I was going insane. I can laugh about it now but it wasn’t funny then.

[Author]

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