Thyrotoxicosis/Thyroid storm

At the end of January i was diagnosed Hashimotos hypothyrodism. Doc prescribed 200mg Eltroxin to start and lowered dose over a month to 150mg. I landed up with Thyrotoxicosis although I heard the doc say Thyroid storm crisis. Was in hosoital for a week and 2 weeks later am still on Pur Blokas for severe symptoms. I was taken off Eltroxin and levels are normalising but still feel terrible. Once im hypo again, the doc wants to put me back on Eltroxin and Im terrified. Dont know if I should go a more natural route which the homeopath recommends. Its called Thyroid-s. I just can't go through this again.

22 Replies

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  • Cocostorm,

    Welcome to our forum and sorry to hear you have been so unwell.

    If you have hypothyroidism, the missing thyroid hormones will need replacing with thyroid hormone replacement meds but a starting dose of Levothyroxine is huge.

    It is usually introduced on a much lower dosage, with six weekly tests and small increments given until a euthyroid status is achieved.

    All major organs in the body are affected by altered levels of thyroid hormone, mainly mediated by T3 which is the biological active hormone converted from T4 (Levo).

    Hashimotos can make our thyroid hormones fluctuate enormously, giving false test results and thyrotoxicosis happens when the tissues are exposed to too high levels of circulating thyroid hormone.

    Unless you have had a long spell of low thyroid hormone, ask to be tested for Graves disease which would mean you are actually HYPERthyroid. Although Hashi is usually associated with hypothyroidism, it is possible to have these antibodies with Graves disease too.

    Thyroid-S is a form of NDT and contains both T4 & T3 hormones and is considered good for people who have trouble converting thyroid hormone. Given your T3 levels must have been extremely elevated, I would recommend caution with NDT but whatever you medicate would need to be introduced very slowly.

    .

    Hashimotos

    thyroiduk.org.uk/tuk/about_...

    .

    Hyperthyroidism

    thyroiduk.org.uk/tuk/about_...

  • Thank you so much for your reply. On the 26th January my S-TSH was 60.78. S-FT4 was <3.0 and S-FT3 was 1.3. After starting the Eltroxin my S-TSH dropped to 0.69 and my S-FT4 was 29.5 on 12 Feb. Then doc adjusted dose, and S-TSH was 0.08 and S-FT4 was 35.0 on the 27 Feb. I landed up in hospital with terrible symtoms on the 15 March. Came off Eltroxin, and on the 22 March my S-TSH was 3.97 and my S-FT4 was 17.2 My TG antibody was 73.6 and TPO was 1000.

    Thanks for the comments on the Thyroid-S. This is all new to me and my question is considering my results above, would it be assumed that my body is getting a grip of the situation and is converting the right hormone? In which case I should stick to Eltroxin? I will discuss with the doc but your input is giving me the right info to address with him and make an informed decision on what to take.

    The symptoms of the thyroid storm is still there even though thyroid levels have normalized. How can I deal with this other than the beta bloka. Its taking forever to pass

  • I had a TSH of 100 and was given 25mcg to start which is too low it is usually 50. Your doctor gave you too high a dose. Doses must be increased gradually.

    It's strange some doctors give 25mcg as a starting dose which is usually too low but to give you 200mcg - no wonder you had a thyroid storm and are nervous of taking thyroid hormone replacements. I would complain.

  • Not knowing anything about this disease and only just being diagnosed I took his advice and to my detriment. If I had only known to question the dose I would probably not be in this situation. When I questioned him he said he dosed me as if my thyroid wasn't working at all. Then he said it was as if my thyroid was like a sponge and threw all this hormone into my system in one go. But Shaws, you are right. I have subsequently learnt that the dose should have started low and worked up. I so appreciate all the help I'm getting here by the way. Wish I had found you earlier

  • It was a huge surprise to me to learn, gradually, that doctors knew little about clinical symptoms as that's what usually takes us to the doctor in the first place.

    Now, if they ever take a blood test for thyroid hormones, it all depends on our TSH and if it doesn't fit the bill they prescribe for the symptom.

    As we go along we learn more and mistakes made by doctors can alert newcomers of what to avoid and what to accept.

    We have to read, learn and ask questions if we've to recover 'normal' health rather than being permanently unwell and wonder why when we are taking replacement hormones.

    I hope you feel better soon.

  • Thyroid S is not all that natural. It may have pig's thyroid as its base, but it has to be processed and have fillers to make it a pill. So, unless you want to take a bite out of an unprocessed pig's gland, there is no really natural solution. :)

    I agree with radd, you should be careful of any form of T3 at the moment. Get all your levels checked before you even consider it. Plus, get your nutrients tested, because Thyroid S won't work for you unless they are optimal. Test vit D, vit B12, folate and ferritin, and supplement where necessary.

  • Thank you Greygoose. When they checked my s-ferritin it was 306 which is apparently high. My DHEA-s was 1.44 which is low and s-calcium was 2.60 which is high. So it seems my body is out of whack at the moment. Had more bloods done but the doc is away for the weekend so don't know what the new results are.

  • Hopefully, they're researching further into your ferritin. It could be high due to inflammation, so they need to test inflammation markers.

    But, if your thyroid is failing, then your body is bound to be out of whack, it's inevitable. :)

  • s-calcium was 2.60 which is high

    Since your calcium is high you should avoid all vitamin D supplements for now, because it will raise the absorption of calcium from your diet, and raise your calcium even further.

    High calcium is not a trivial finding. Your doctors should be investigating this urgently.

    parathyroid.com/high-calciu...

  • Thanks for that. When I asked the doc he just brushed it off and said it was because of the thyroid crisis I was going through. But tomorrow I'm having blood tests again and will put that in. Must say I have absolutely no faith in the specialist physician that is treating me. I have also gone to a GP and will ask him too.

  • 200 mcg levothyroxine to start is far too much, up to 100 mcg may be used if the patient is not elderly and has a healthy heart. If you do not know this doctor I would check them out and perhaps make a complaint as suggested by Shaws. What view did the hospital take about your prescription?

    It should be OK to go back on levothyroxine, perhaps 24 or 50 mcg given your experience. You will need to be monitored as your antibody counts are very high, this can cause fluctuations in your thyroid hormone output. Is it possible you could be put under the care of a better doctor?

    (I am assuming your first prescription was for 200 mcg levothyroxine daily. Please let us know if this is not so).

  • Yes that's correct. The doctor is a specialist physician and told me it is the easiest thing to treat. Says what happened to me was rare. Every other doctor I spoke to said the dose was way to high to start. It nearly cost me my life and a heap of money. I have been to a gp since and he is one who said I must start on .25mg when the levels are low again. But what worries me is that according to the specialist physician, the endocrinologist he referred me to in hospital, the nuclear medicine doc who did the scan and the GP, I should be feeling better. But I'm not. These symtoms, albeit less and less, are still happening. Just wondering how long it lasts for.

  • By the way, when I landed in hospital, I had to stop the Eltroxin. Still off it since 15 March. Waiting till it drops low before the doc starts again. Probably next Monday. And then only on .25mg

  • Pur Blokas is a beta blocker called propranolol. This was the best treatment for your hyperthyriodism. However, propranolol impairs the conversion of T4 to T3 (the active hormone). Whilst this was needed when you were overdosed it may not be appropriate now. When you see your doctor on Monday I would ask if you still need propranolol, or if you can reduce the dose. They should be able to put you back on levothyroxine. They will probably want to start with 25 mcg which is perhaps too little, but I can understand their situation they had a patient who had a very bad response to too high a dose and they want to take care. If they put you back on 25 mcg see if they are agreeable to increase it to 50 mcg in a couple of weeks and then perhaps monitor you in four weeks. I can see that the doctors will now want to progress cautiously, it's just human nature, they didn't put you in this mess.

    It will take a few months before you are better, it always takes this long for most patients.

  • I have stayed on the pur bloka by choice as its the only thing that helps me. I have tried to minimize the dose to 20mg per day. They said I could take 20mg every six hours but didn't tell me for how long. The communication with the doctors has been quite difficult as they don't respond to calls often. I feel sick all the time although yesterday I felt a lot better. But today is a bad day. When I see the doc on Monday I will bring this up. Thanks for mentioning it. Everything helps. If there is something else that's safer to take I will try it. The GP suggested Urbanol and it made me feel terrible

  • I'm still on Pur Bloka because I still have the symptoms of the thyrotoxicosis.

  • OK that makes sense, you can gradually come off it when you are better.

  • Thanks. I really do want to stop but the symptoms recur all the time. Wonder how long it takes to fix

  • You can use herbs, like Lemon Balm tea, Motherwort is also good. It always helps me during Hyper episodes. Concerning the starting dose of Levothyroxine, my first (and single) dose of 25mcg pushed me into a hellish hyper state for days. The doctor asked me to stop immediately. After a break I started with a tiny dose of 3mcg to which there was no reaction, and build it up very slowly. It took me one year to reach the daily dose of 50mcg. So be careful, as some of us might have quite adverse reaction to Levothyroxine and have to build a kind of tolerance very slowly and gradually.

  • Urbanol appears to be a brand of Clobazam which is a benzodiazepine. Often used for anxiety.

  • The GP who prescribed it thought I was just anxious. I explained it was not a mental issue I had. As it turns out, the Urbanal didn't go down to well and made me feel more ill

  • Hi Margareta3. After reading JimH111 I spoke to the homeopath and she suggested Ashwaganda. It definitely helped the symtoms of the thyrotoxicosis and for the last two days I have not taken the beta bloka. Today I took the first 25mg of Euthyrox and so far so good. I have also consulted with a new doc and I will be seeing him tomorrow. Just a question. How long after you took the single dose did you feel bad?

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