Where do I go from here?

I was diagnosed as hypothyroid in May following birth of second child. My TSH was over 100 and my T4 3.1. Despite my TSH being normal for about 6 weeks I still felt terrible with constant leg pains. My consultant was very unhelpful but GP sympathetic and prescribed Erfa thyroid. For 3 days felt great, then really short of breath. Now taking 2 grains or Erfa and 50 micrograms of levothyroxine, but pulse rate and symptoms seem to change throughout day. I have 2 small children and can't enjoy them. Has anybody had a similar experience or have any advice? I'm really at the end of tether and when short of breath or have palpations very scared. Thought I was going to die twice at very start of diagnosis. finding it very hard to cope now.

7 Replies

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  • How about doing a saliva test to see how your adrenals are coping. Erfa can stress them out big time, leading to the breathlessness and heart rate changes.

    Nel.

  • Thank you for this. Will speak to doc on mon. Neither adrenal function or T3 has been checked. It's really great to get some feedback from other people. Feels like an uphill struggle!

  • Thank you for this. Will speak to doc on mon. Neither adrenal function or T3 has been checked. It's really great to get some feedback from other people. Feels like an uphill struggle!

  • Ask your GP about the Adrenal stress Profile....it's a saliva test from Genova Diagnostics......it's accurate. If your GP is reluctant you would have to pay for it yourself.....hopefully your surgery will be helpful. I had test results showing Adrenal exhaustion ( nearly addisons ) and have been taking Nutri Adrenal complex for 3 weeks .....feeling slightly better but it'll take time! good luck anyway.

  • Hi Jcheesey,

    I’m sorry you’re having such a bad time! Your TSH was very high at >100 and your T4 level of 3.1 is well under any range that I’ve seen. This often means that you’ve been hypothyroid for quite some time before diagnosis and consequently means that it can also take a considerable time to get well again.

    A ‘normal’ TSH after 6 weeks does NOT mean that you are well again by any means! It just means that you are back within the blood test range, this varies around the country but it’s usually somewhere in the region of 0.5 to 5.0 (N.B. ask for your ranges for all tests each time). Also most of us need to get our TSH to around 1.0 or even below in order to feel well again.

    Becoming hypothyroid is usually a gradual process and it’s a gradual process getting well again too. Being hypothyroid affects every part of your body and it takes time to repair itself again. It must be really difficult with 2 small children but try to get some ‘me’ time each day and relax if you can. Meditation techniques can help a lot as can pacing yourself too. You’re probably permanently tired so just do what is essential; it doesn’t matter if the house needs dusting etc, just concentrate on what absolutely *has* to be done.

    Accept ALL offers of help!! Also ask for help too, people don’t always realise that you’re struggling if you don’t say so.

    My legs used to get really sore too. Sit down with the children, put your feet up and read them a story or watch some telly with them for a while if your legs are sore. Don’t stand if you can sit, even just chatting to someone always try to sit down if you can. Get a tall stool to sit on when washing up, peeling the potatoes, ironing etc; it really can help.

    Are you taking the Erfa and thyroxine all together in one go or spacing them out over the day? Erfa has T3 in it and this is much shorter acting than thyroxine – many of us who take it find it’s better to take it twice a day or even more often if particularly sensitive to it. I take mine when I wake, around 6 to 7am and then again somewhere between 1.30 and 2.30ish. You’re supposed to swallow it with water but I find it more convenient to just pop it under my tongue and let it dissolve if I’m out and about (I always carry some in my handbag).

    That’s probably enough for now so I won’t witter on any more! I hope this has helped ?

  • Yes very helpful thanks. Just good to communicate with people who know the lingo! The past 4 months have been awful I have to admit. My GP said I was the most severe case of hypothyroidism she had ever seen. Been in hospital twice and couldn't even talk for more than a couple of minutes at height of it all. Thanks for advice especially when to take tabs.

  • Hi

    I find that the palpitations come and go, some days are worse than others and thought it was something i just had to live with. Having said that i did once up my dose a little because i was having symptoms i thought were related to my thyroid but after a few weeks had VERY BAD palpitations and like you felt scared but after lowering my dose again went back to normal.

    My point to all this is that if you have just been diagnosed and treated, i have found it is trial and error with medication until you are on the right dose and can be a long slow process, certainly in my case anyway as i was put on a dose then tested after a few months then altered and tested again after a few months etc.

    The only tablets i have ever taken are Levothyroxine and have never heard of any of the other ones until reading the posts on here.

    In the past when i wasnt regulated on medication i too felt like i was dying and just couldnt keep up with every day living, in fact i spent most of my time sleeping when i wasnt at work and found it really hard to wake up and on many occasions was late for work through not hearing the alarm clock.

    Hopefully you will soon find a tablet and dose that suits you and you will soon be enjoying your kids again. Best wishes x

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