Miserable at 4am

Well its 4am and I am hating being hyper right now. My meds were reduced in march from 15mg carbimazole to 5mg and I am starting to feel as bad as I did before being diagnosed!

All I want to do is sleep but when I do manage it I am dreaming of my symptoms (frequent bowel movements, sweating, heart pounding, feeling sick and bloated, dead fingertips the works. So I'm now up and feeling all those things.

Endo won't see me any quicker than 8th July and knowing that I have to suffer with this for over a month is depressing. Why do they make appointments 4 months apart when it only takes 6 weeks for the meds to settle?

Miserable....

12 Replies

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  • I know how you feel although I'm stuck in horrible hypo and suffer terribly from insomnia. Take the tiniest bit of valium just to get a few hours sleep and then wake up to a racing and pounding heart and chilled to the bone.it is such a horrible disease whether you are hyper or hypo. I have been both and they are similar in many ways I have found. I have been suffering for seven months and only just have thyroxine in range now but doesn't feel like it is enough for me yet. My tsh is 2.1 and endo wants me to sit on that for 3 months to stabilise as we have increased dose a lot in last 6 weeks. If I feel rotten after a month though I will get retested by GP and up the dose a little.

    It is such a frustrating and debilitating disease and we are all suffering in our own little worlds. I feel for you and wish I was there to hug you and cry with you. It is hard but let's hope it will all be ok soon..

    Lynda from Oz xxx

  • Thanks Lynda. Sometimes all you need is a hug hey. I might ask the GP to do a test sooner than July then. Can he change my meds or do I have to wait for the endo?

  • Do you want to reduce meds?

  • I think I need to increase them if anything. Started on 15mg as hyper and it pushed me hypo so they reduced to 5 but maybe I need 10 if I'm hyper again

  • I know the feeling. I am hyper and have been waiting 3 months to see the endo. I am on 10mg carbimazole but my arms are so sore that some days I cant even lift a cup. My legs ache, I can't sleep, Im short of breath and my arms are asleep most of the time. I have definitely lost my sense of humour. I HOPE THERE WILL BE SOME RELIEF WHEN I MEET THE ENDO but I fear I may be putting too much faith in him. I just hope things improve.

  • Its awful how we lose ourselves to this disease. I hardly recognise myself now. No more bubbly smiley Leigh only miserable in pain fed up Leigh. I trusted my endo too much and I am slowly losing faith that they will get the dose right so am quite pessimistic about everything right now. Hopefully you have a better endo so don't lose your faith just yet x

  • Hi Leighma81,

    If the Endo won't see you before July, I would definitely go to your GP urgently. If needs be the GP could speak with the endo about your medication. it sounds like you are Hyper again and perhaps it is time for an increase in your meds or a even a change in meds.

    You can not carry on like you are for more than a month...they wouldn't do that to any animal so why should you suffer like this?

    I hope you find some relief soon.....

    Much love,

    Sue xxx

  • Know just how you feel Leigh, hyper is horrible. I'm a bit hypo now and although I'm feeling better in some ways hypo isn't good either.

    At one point I was like you and found myself thinking 'where is the me I used to be?'

    I diagnosed with Graves December 2102, incredibly hyper so started right away on 20 mcg carb, raised to 40mcg carb via a letter from my endo shortly after a blood test I had done three weeks into the treatment, I had 50mcg levo ( not a lot but possibly because I am in my sixties ) added along with the 40mcg Carbimazole February then another 25 mcg levo in April. That was just about six weeks ago but I am feeling hypo again, freezing cold, sneaking back to bed for an afternoon nap to get me through the rest of the day, constipated, moulting hair , palpitations lurking in the background so I think I need a bit more levo.

    Managed to get booked in for a blood test on Monday morning but I am sure I will be within 'the range' the range being so wide it would be difficult not to fit in somewhere! I might be within the range but I am not at the optimal amount for me so see what happens, I dont think my GP will be able to change anything but I am hoping she might be able to contact my endo and do it that way, like you I am not due to go back to the hospital until the end of July which feels very far away to me too.

    If you are taking Carbimazole are you taking vitamin C with it? My pharmacist stressed it was really important to take it along with the Carbimazole so I take 1000mg +zinc slow release capsules every day - they come in an orange box. They are not cheap but I try to get them on a three for two deal when I see them on offer, they are slow release and I think they do me good.

    If it is any help to you just be kind to yourself, eat healthy food and just do the things you want to do, if you don't feel like doing something just don't do it. I got really stubborn and refused to do anything I didn't want or feel able to do even if my other half said I'd be fine or other people raised their eyebrows, I figured none of them were in my body so what did they know. It won't last forever. I work on a casual basis and had to cancel a whole lot of work I was booked for in January because I felt so ill but I'm back working again this which is amazing. OK I go to bed early to be able to do it but the fact I feel like doing it is amazing and I didn't feel I would ever be at this stage again. So you'll get there. Might take a while but you will get there. Look up Clarebear's blog about climbing her mountain.

    (((((Big hug))))) hope you feel brighter soon.

    Liz

  • Hello Leighma81

    So sorry that you are having to feel this way. I also was diagnosed hyperactive thyroid and put on Carbomazole. In between hospital appointments I have phoned the Endo secretary. She is turn passed on my concerns to the Consultant and I usually got a phone call back to readjust my medication. Is this something that you could do?

    My GP told me honestly that she knows almost nothing at all about thyroid conditions, so she has never been much help.

    Being awake in the early hours of the morning is such a lonely experience and our symptoms feel magnified at times like this. I have been in that dark and miserable place so I do sympathize and send you a gentle hug and hope you will get the support and treatment you need to lift you up right now.

    This hyper/hypo condition is not good but remember that you are not on your own. I am certain that others who are much more knowledgeable than I am will be more than happy to offer help and support to you today. Take it easy and enjoy this sunny day. Hope you can sleep better tonight. xx

  • leigh, call your doctor right now and tell them you have, well, what you just said here. You know, they keep people UNDER dosed when they are hypo because they are so afraid of the symptoms YOU have right now because they might have a heart attack or osteoporosis, (not that it is necessarily true) but logically they should be just as worried about you for the same reasons.

    I don't think logic has been a high point in this profession, though.

    Please don't sit and wait while your health deteriorates. In the meantime, east raw cabbage, stay away from caffeine, do you have a beta blocker? You probably know all this. Best Wishes.

  • Hello Leigh I hope that you managed to have a decent nights sleep (I didn't) hey ho!!

    I hope that you will take on board others comments and push the GP into helping you to feel better in your health while you await your hospital appointment with the Endo Consultant.

    Take good care of yourself because in my humble opinion if you don't take control then the medics sit back oblivious to your many problems. Warm thoughts sent to you today xx

  • Ah thank you. Had a better sleep but still woke up half a dozen times but at least I didn't have to get up for work at 6am.

    Sorry to hear that you had a bad night. It's nicer knowing you're not alone but when its just you wondering around a dark house at stupid o'clock you do feel rather lonely.

    It's awful that we have to be the ones who push for answers and results, you'd think that doctors are there to help and push for you but thyroid disease seems very different in that way.

    X

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