I am in a thyroid storm. Had thyroid cancer 2002(total thyroidectomy) this Jan throsd swelled shut, march very high bp and heart rate.

[tmarsee8]

5 weeks ago tsh was 0.0015 now it is 18.0. For 10 years I was on 200 MCG then 5 weeks ago they moved me to 100 MCG and today after blood test duped to125 mMCGno energy, heart rate up, bp too, leg cramps. Can't sleep

[shaws Administrator]

I am so sorry that you are in a Thyroid Storm at present. I only have hypothyroidism which isn't a patch what you're going through at present. I do hope you are under the care of a good Endocrinologist and you have support of a good GP.

I do not know what to suggest and someone who has had a Storm will give you advice/support as to how they coped.

I do hope you feel better soon.

[Bonny67]

This has happened to me several times now, over the course of 10 years, including a couple of months ago (I have Hashimotos). The first time, I was very scared and ended up in my local A & E for a whole day, having lots of ECGs etc. The cause was not diagnosed by the doctors there. Now I know that the only thing that helps me is to take beta blockers, once the dose is right, which can take a few days for me to work out, I feel a lot better and can sleep properly, as opposed to not at all. I have a store of the beta blockers now (I get propranolol) The muscle cramps also ease.

[marram]

Thyroid Storm is a rare condition which is an acute and very rapid progression into vomiting, extremely high temperature, tachycardia, dehydration, unconsciousness and heart failure which requires immediate treatment with intravenous rehydration, beta blockers and carbimazole. It is often accompanied by hallucinations, as it was in my case. I had a thyroid storm in 1980 when I had very severe untreated Graves' disease. The total time from first feeling ill to hospitalisation and near-death was 15 hours.

thyroid.about.com/od/hypert...

Fortunately I had a very fast response (10 minutes) from a locum in my GP practice who had just correctly diagnosed my Graves' the previous day She had prescribed carbimazole and had told me to call her if I started feeling ill. She quickly had me on a drip and on Beta Blockers. Unfortunately the Carbimazole did not really control it and a couple of years later I had a Total thyroidectomy.

I hope that this information will put your mind at rest regarding Thyroid Storm.

In your case, though, it certainly does sound as if you have had too much thyroxine for a time which made you thyrotoxic, then it was reduced far too quickly for your body to cope. The slight increase to 125 should help, but it will take some time. What was done about the throat swelling? has the cause been found?

You don't say if you are being cared for by an oncologist still, or if you have been transferred to the care of your GP. If it is your GP, then I would suggest you ask to be referred back to the department who were caring for you. It is important that your TSH be suppressed after thyroid cancer.

A high heart rate and high BP can be symptoms of under as well as over-dosing. But I really think that you are in a state where your body is confused by the sudden drop in your thyroxine and will take a few weeks or even months to adjust. It was very irresponsible of whoever just cut it in half like that. A similar thing happened to me, I was on 150 and my GP reduced it to 100 - it caused me to have several mini-strokes.

If you continue to feel ill, then it could be worthwhile investigating if you have vitamin and mineral deficiencies. B12, D3 are both important to have optimal levels, and also to check your iron, folate, ferritin. If your GP will not do these tests, then it is possible to do them privately.

I do hope that you begin to feel a bit better soon, it is horrible to have your medication changed like that, it really plays havoc with your body. Do come back and let us know what transpires. You definitely need some advice regarding the neck swelling.

Marie XX

[Hidden]

Hi

Yes who said you had a thyroid storm? Unless your thyroid has grown back that is not possible and a TSH of such a high number would indicate the opposite. When you have NO THYROID the symptoms of severe hyPO can mimic hyPER - you slide into myxodema very fast. Also when you don't have adequate iron, cortisol, vits and minerals, electrolytes (get them to test your electrolytes asap) and you are on inadequate levels of thyroid, you can get all kinds of weird, wonderful, wacky symptoms of agitation, pseudo hypers etc .... Have you been on the Stop the Thyroid Madness site - look up iron, adrenals, hyper symptoms.

It could be that you have some malabsorption issue going on in that you can't use your meds - have they changed the brand, have you been ill, hit the menopause, changed your diet, got thrush or anything like that lately?

I had a TT for thyCa also, and I had Graves, but thyroid storm is very rare, my friend had it, she was in hospital with a free T3 of 53 and was unconsicous for days. What are your thyroid results - ring the hospital, get copies of everything they have, type them out here and we'll help.

Rebecca

x

[eeng]

It sounds as though whoever moved you from 200 to 100 mcg didn't know what they were doing and were trying to get your TSH into the 'normal range' which is not appropriate for people who have had thyroid cancer. If this is the case I would consult a lawyer!

[wall]

I am so sad to read this story ....I pray for you to be sorted out as soon as possible ....crazy to move the meds as they did must be mad ..much support for you on this site .God Bless and Love xxxxxxxxxxxx

[carolr]

Propranolol made me hallucinate.

It's a adrenal stimulant.

[slakin57]

Sorry but propanol is not an adrenal stimulant - quite the opposite, all beta-blockers (of which propranolol is one) block the action of adrenaline on the body.

[nezzykins]

Hi tmarsee8. Sorry to hear that you are feeling so ill. Im not convinced that you are in thyroid storm, as i doubt if you would be able to get on your pc to get to forum. You would be far too ill or even be hospitalized. I had thyroid storm after Rai For gGraves. My FT4 was 87.4. Not sure about the rest of results as I was so ill. I was prescribed 160mg of propanolol. Thought I was going to kick the bucket. Just out of curiosity, who told you that you had gone into thyroid storm? X

[tmarsee8]

The throat swelling shut was due to becoming allergic to lisinopril after 10 years. Bp has been 195+/150+ heart rate 120/130, this has been going on for at least 6 months. The doc I was seeing always tried to keep tsh, t3, t4 as low as possible. And whomever said I wasn't going thru a storm I just got out of the hospital 4 weeks ago. Thx.

[Hidden]

Hey there

Bless you, I'm still confused though, thyroid storm is a medical emergency and as far as I'm aware you cannot have one unless you have a thyroid and yours was removed. 200mcg is not enough thyroxine to cause a thyroid storm. A suppressed TSH doesn't mean anything in a thyca patient (it's meant to be suppressed) so unless you can elaborate we can't really help here - an ill informed doctor might have told you it was a thyroid storm due to your low TSH and perhaps if you had 'hyper' type symptoms (and like I said HYPO and HYPER can mimic each other in the thyroidless once you get below a certain level) but unless we know what your FT3 and FT4 were then it's hard to comment.

I've met several people online who were also told they were having a thyroid storm and they were having nothing of the kind .... so I can't quite figure out how you got so overdosed on thyroid hormones you were in intensive care (which is what a thyroid storm is)?

High pulse and high BP can be a hypO symptom, and can also be caused by low sodium, low iron, and low cortisol - all of which are common in the thyroidless. it's a complex juggling act that most doctors don't understand.

I do know that thyroidless people generally need a good wallop of Thyroid meds and in your shoes I'd put yourself back on 200mcg if you felt well on that, tell them that's what you've done and refuse to budge until you get to see a thyroid cancer specialist. I carry a card in my wallet given to me by my thyca team, no medical professional is allowed to change my dose without contacting my hosptial in London as I'm on life long TSH suppressive therapy ....they all moan when they see my results but NO ONE other than the one specialist I have found who I can trust touches my meds, and only then if I agree.

I'm sorry you had such a bad allergic reaction to your BP medication - high blood pressure is often a symptom of poorly treated thyroid disease and a further red flag to me that your doctors do not know what they are doing really (please don't think I mean that they don't care, most other doctors are well intentioned, it's just that the road to hell is paved with good intentions)....see here: stopthethyroidmadness.com/b...

I appreciate this might not be what you want to hear. In my experience doctors who know anything about how to truly treat the thyroidless are rarer than hen's teeth. Finding an endo who really gives a cr@p is rarer still. It can be a bit scary to realise they don't really know what they are doing and what they are telling us isn't right but the overwhelming majority of endocrine treatment in this country is a joke. This can be a choppy period - I swung between blaming my doctors and then ranting about internet 'quacks'. I so didn't want the situation I was in to be true, but I'm grateful now for those people who kicked me up the bum and woke me up to reality. If I'd listened to my first two endos I'd be dead. Truly. Keep going until you find a doctor you can trust and work with. Most of us have to figure it out for ourselves. I'd strongly suggest you buy the Stop the Thyroid Madness book and start to educate yourself but every symptom you are describing screams inadequate treatment rather than too much thyroid hormone.

Best wishes for a speedy recovery ....

Rebecca

xx