New to this, need advice

Hi,

I'm 33 was diagnosed with hyperthyroidism in November literally just before we moved to the USA. I was put on carbimazole by my uk doctor + instructed to take a blood test in 6 weeks time. I had a reaction to the carbimazole swollen lip, hives all my joints seized up. I literally couldn't walk to the toilet my husband had to carry me. I was admitted into hospital in the USA came off the carbimazole and they decided the only option was to give me radioactive iodine to kill the thyroid. So I am now hypothyroid and was put on levothyroxine in February, but I feel awful.

Sleep problems, wake without fail midnight, 3/4am + sometimes don't go back to sleep. I have 2 young children that I look after during the day 3yrs old + 10 month old. I'm terrified something 'bad' is going to happen to them because I am so tired. I get very anxious about the slightest thing! I used to be so chilled out about everything before all this started happening.

I get vey low, crying all day. When I said this to my endo he said that he thought I was an emotional person anyway who would have cried at the drop of a hat before. I said yes I am emotional but I wouldn't have cried solidly for 2 days. I would have cried felt better move on, but I can't seem to lift this foggyness.

The other symptoms are sore gritty eyes + diarrhoea. But the sleeping is the worst. I feel so exhausted but can't sleep!! Really getting me down. Does anyone else have similar symptoms to this as I thought the anxiety + the sleep were more symptoms of hyper. But when I was hyper I never had any problems sleeping.

I am having bloods done on Monday to check that the dosage of levothyroxine is correct. I don't even get an appointment with the endo, he is going to discuss the results with me over the phone. I am only getting tested for TSH and T4.

What I'm worried about is those tests come back 'normal' and he sends me on my way. What other tests should I be asking to have?

9 Replies

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  • Maddie,

    I used published papers to produce a spreadsheet that estimates how much levothyroxine you might need.

    dl.dropbox.com/u/318411/Est...

    It is still only an estimate - and it uses several different formulas because the endos cannot agree a definitive formula!

    Have a look - you are VERY likely to need more than this suggests - these are suggested starting doses after thyroidectomy. (Of course, a thyroidectomy is sudden whereas radio-active iodine ablation takes time to have its full effect.)

    Are you doing all the things we so often mention - taking the levothyroxine well away from food, drinks other than water,supplements and other medicines?

    Are you on the same "brand" every time?

    I would like to see you checked for vitamin B12, folates, iron/ferritin and vitamin D. It would also be good to see an FT3 test as well - but if that isn't going to happen, you might find persuasion difficult.

    When do you take your levothyroxine? Have you seen the poll here about that?

    144 varied comments here:

    thyroiduk.healthunlocked.co...

    If nothing else, get a good quality thick eye gel - preferably preservative-free - for daytime use and for nights use Lacrilube or another similar thing (that is a bit like Vaseline). There is no need for you to continue suffering the eye symptoms without some relief.

    Rod

  • Maddie, the sleep thing sounds like it could be fatigued adrenals. Maybe you should get them tested, too.

    Grey

  • Hi grey,

    Had no idea what fatigued adrenals were have since googled + yes this sounds exactly what I am experiencing. Do you have any experience with this. What would my next step be? Following dr wilsons diet?

  • I have severely fatigued adrenals. The doctor that diagnosed them (most doctors aren't capable of diagnosing them) put me on Hydrocortisone, which I am still taking. He didn't say anything about diet although I know he'd like me to give up all dairy, he's very anti-dairy for many reasons, but I don't know if adrenals are one of them. So the only dietary change I've made is to make sure I get a lot of vit C - at least 2000 mg a day - and plenty of salt. I'm afraid I don't know what Dr Wilson's diet is.

  • Thank you for the advice. Yes, used to take my Levo 1st thing in the morning, then have breakfast maybe an hour later. But after seeing information on here started taking it when I wake at 3-4am. But doesn't seem to have made my difference I'm afraid.

    I am currently on 0.112mg (112mcg) of levothyroxine, the same brand.

  • If feasible, it really might help to take before getting into bed.

    I am certain that improved sleep was one of the very first things that levothyroxine did for me - and I take at about 23:00 every night.

  • Unfortunately we don't eat r dinner till 8-9pm then because I am so exhausted from the not sleeping I go to bed quite soon after that! Thought it would be too soon after eating to take it. I also take some herbal tablets before bed to help me sleep. I might try it though. I'm open to any ideas thank u

  • Theres a sleeping pill you can get from drug stores in the US called Alteril. Its not on prescription. Its quite good but you need to take 2 for it to work. I'm very hypo and have the awful exhaustion yet insomnia. This has been going on for years. I've tried every pill there is. Otherwise get the doc to prescribe ambien.

  • Maddiethemadwoman, so sorry for your troubles. Reading your experience confirms the need for great care when given radioactive iodine. I fear my endocrinologist is going to suggest the treatment as my health, which seemed to be getting nicely stabilised, appears to be going downhill again (blood tests show slide back into hyperthyroidism). He did say he wanted to wait until he was sure before suggesting the treatment to try and ensure I didn't slide over 'to the other side', after hearing of your ordeal, I'm not sure I want it!

    Very best of luck.

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