Feel awful. What do you think is happening?

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I am in that awful waiting game between tests. I had neutropenia and my TSH was high. T4 was 13, so on the low side. I was having terrible oral symptoms of painful sore mouth, swollen tongue and teeth pain. I was not eating well. I had dropped my dose a few days before my last endo appointment due to the symptoms but even though the oral symptoms reduced, I felt very stressed and tired. Endo was not pleased I had cut my dose completely and reinstated me on 5mg despite my neutropenia.

I felt much better for a few days and seemed on the up. Then a week last Saturday I was put under tremendous stress by a family row and had a 'hyper attack' that night with racing pulse all night and zero sleep. Since then I have declined rapidly. My pulse recovered but my blood pressure is often under 100/60, and I feel so week, dizzy and shattered. I have lost more weight as I am not eating well and have to force down every mosel. My endo ordered tests for next Tuesday and said to see him a week later so I am in limbo. I can't work out if I am hyper (pulse is in the 70s so not majorly fast but I have night sweats and hot flashes. My legs ache like they did when I was really hyper), or hypo (I am so tired. My hot flashes alternate with feeling cold and my BP is so low). Anyone else who is hyper get hot flashes and then sometimes feel cold? Thanks

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  • Posted

    Forgot to say, I am on carbimazole 5mg. Originally was on 25mg, reduced to 20, 15, 10 and now 5. Thanks.
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  • Posted

    Also, when I wake up I am vibrating/trembling bt this passes after a few minutes. I feel trembly some of the time when doing things like putting sugar in tea, but it's not a visible shake, just an inner tremor.

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  • Posted

    I found your post quite upsetting and had to reply immediately as I've been going through exactly the same thing.  Do check your iron levels as I became iron deficient which made me feel even worse.  This is more common in thyroid patients.  It may be worth taking a good quality iron supplement while you are waiting for test results and magnesium.  I, like you, was doing well and a stressful incident put me hyper again.  I also have neutropenia and I know I've got to do something permanent to get off the carbimazole.  I don't know why some suffer more than others as neither of us are on a high dose of carbomazole, but we're all different.  My pulse never increases that much and I have the same low BP.  I've decided to have a complete thyroidectomy and seeing the surgeon next week.  Please don't let this thing take over your life as I have .  It will affect all aspects of your life and the mental health issues are very hard to cope with.  I'm currently feeling quite well so you willo get better.  I've been freezing cold in the morning for the past few days so I'm going hypo but it's better than hyper.  I presume you have Graves disease.  I actually went into remission once but a bout of sepsis started it all up again and I've been up and down for three and a half years.  

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    • Posted

      Thanks, Sue. I am so sorry to hear how long this horrible disease has been plaguing you. It really is the most frustrating thing to have spells of feeling better and then to just crash again. And it's so confusing to flip between hyper and hypo and not know how you are. I have found recently that I mentally cannot cope with even the slightest bit of stress, especially in relationships. I am on the edge. Normally such an easy going person, I find myself reaching a height of anxiety and breaking point so easily. I never take it out on others I just have to get away into the quite peace of being alone.

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  • Posted

    Sounds like an infection. These viral infections can make you feel really, really ill. However it will pass. Drink plenty of fluids to diute the toxins produced by the virus.

    Try to drink some milk to raise your blood sugar.

    Let your dr and endo know all this.

    You may need antibiotics .Keep an eye on your temperatue.

     

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  • Posted

    Oh dear there are so many ups and downs with this disorder. My white cell count dropped a little when on PTU. I had an array infections that I never had before, including gastro and UTI's, not to mention the joint pain. The medication can affect your immune system, and yes stress does have an affect, my last relapse which made me very ill I believe was the result of the death of my husband. You take care and good luck when you see the endo, you may need some antibiotics?

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    • Posted

      I am so sorry you lost your husband. No wonder you relapsed.

      ?I am feeling very ill this evening. Even the suggestion of a holiday sent me into panic mode. I couldn't possibly manage to go away even though I haven't had a holiday in 14 years. I haven't had a day off in ten years. but thankfully my son is back from uni and helping me with the daily job of clearing the horse droppings from the fields. Soon they will have to come in at night again and I'll be back to mucking out and daily handling of the horses. I hope I feel better by then! I've totally crashed and had to go to bed by 8 for the past 3 nights. That's not like me at all. My legs feel horrible. I feel sick and weak, but no temperature. I think I have just gone hyper again after the stress of last weekend and maybe 5mg of carb a day just isn't enough.

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    • Posted

      Thank you for the kind words. How long have you been on Carbimazole? I was allergic to it, so I went on PTU for 2 years initially, then after a relapse after 2 years, for another 18months, this saw me right for 18 years! I thought I'd cracked it. I went back on PTU for 8 months and had RAI in February this year. Your body is just so shot all time and any excercise is dreadful, I really hope that a review of your medication will help.

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    • Posted

      I've been on the carbimazole now for five months. I had no trouble to start with and actually started to feeel better than I had done in years. But then as I continued and my T4 came into the bottom of the range, I felt rubbish again (but in a different way to when I was hyper). My endo wants me on the 5mg dose for 4 weeks so that he can see whether I am going up or down, and so I must try to stick this out until he sees me in two weeks. I am having my bloods done next Tuesday and will get the results the next day so will be able to see for myself if I have, as I suspect, gone hyper again. One of my symptoms of being very hyper, was complete intolerance of alcohol, and this has appeared once again. After only a glass of wine I am completely knocked for six and my legs ache terribly. I have to go to bed. It is an awful feeling. I will avoid alcohol now until I am feeling better again.

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    • Posted

      Hi I think your endo is still trying to work things out as you say, but over a 5 month period there have been a lot of adjustments to your dose? Let's hope you can get the right dose sorted soon, as it does sound that you have gone hyper again. Good luck

       

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    • Posted

      Dear Evergreen

      I do not wish to alarm you BUT I am somewhat concerned about your comments about alcohol and how it makes you feel especially how it makes your legs acche terribly.

      Is it at all possible to never ever take this toxic substance again?

      I have peripheral neuropathy. Several weeks ago I got so cheesed of with the pain I drank  some martini left over from Christmas that I had bought for visitors. Guess what? At the time of drinking this poison I felt as though I did not have a care in the world. Sadly the following day my legs were worse than ever. There is no way I am going to drink any alcohol again.

      Alcohol can cause peripheral neuropathy and pvd , peripheral vadcular disease. smoking causes the same.

      I do not wish to preach but plese try to avoid this stuff.

      Please .......

      I used to drink but gave up over twenty years ago after being diagnosed with epilepsy.

      I do not even fancy the stuff anymore.Sorry for the sermon.

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    • Posted

      I do not intend to drink a drop until I have this thyroid thing back under control. I don't normally have any trouble drinking alcohol and never have more than a couple of glasses. Three glasses at the most if we have a social occasion. But I do enjoy sitting out on the patio with family and having a glass or two of chilled wine. I don't normally have any detrimental effects. It is only when I am hyperthyroid. I agree that it is a poison if taken too often or too much, but rest assured, I stay well within the recommended guidelines. My body is telling me it can't tolerate even a small amount right now, and I am listening.

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