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Confused!

  1. am so grateful to have found this site and see that I am not going crazy!

    I would be grateful if anyone could offer me advice. I am 27 years old and was diagnosed as having an overactive thyroid at the beginning of March which was due to having Graves disease. Since then I have been on 20mg of Carbimizole alongside beta blockers. However apart from a few days I have not felt well since then. I am exhausted every day, I have heart palpitations and often feel dizzy. I feel like I am constantly living in some sort of fog, I know that sounds strange! I have extremely bad anxiety and panic attacks, which is the prime reason I first went to the doctors as they came out of the blue.

    These have still not gone away and it makes getting out of the house very hard, although I dont have the energy to do so anyway!

    I saw a consultant last week, who had no time for me and seemed to be in a hurry, he didnt ask me any of my symptoms simply checked whether my hands were shaky and then told me to have a blood test.

    He then e mailed me to say that I was now underactive and to take Levothyroxine as well as Carbimizole. I just want my normal life back I was constantly on the go and now I barely leave the house! I am at the end of my tether I feel like its all in my head Has any one else been similar to this?

    Thanks for listening to me moan!

    Ellen

  2. Hi Ellen - so sorry to hear that you are having a hard time with thyroid problems. I had overactive thyroid in around 1994 age 40. Mine too was graves - isn't that where it is autoimmune? I had carbimazole and I was surprised to hear you have thyroxine AND carbimazole. Can't you see your GP to ask for an explanation of how it all works, etc. The consultant sounds awful and you deserve better.

    I was so lucky in that my consultant at the time was wonderful, drawing me diagrams, explaining doses etc etc. I do remember feeling as though I was going 100 miles an hour, hot all the time, ravenous and still losing weight! The shaky hands were at the most odd times - I went to write and my hand would suddenly shake, then sometimes I would reach out for a cup and it would shake! I'm sure my boss thought I was on the bottle!!

    I struggled after awhile having to keep taking carbimazole and felt like I was out of control. I remember not taking it all the time, and then seeing one of the registrars rather than the consultant and she really laid into me, making me quite tearful (which is something which happens with this illness because your body is running so fast). Anyway the next time I went to the hospital, I asked if I could wait any amount of time to see the consultant. I wonder if you could ask to see someone else if they are on duty at the same time, ie the registrar instead?

    Anyway I did have to have radioactive iodine eventually, as mine was \"cured\" but then gradually flared up again over about a year. My gland is totally zapped and I now take 125mcg thyroxine (reduced by 25mch after giving up smoking!!).

    The exhaustion must be because you have gone under-active. Trawl across the internet and read as much as you can about Graves.

    I use this site on another illness (PMR) and it is extremely useful in terms of knowledge and what people can offer - especially some reassurance and support when you are feeling so low and fed up. As mine was so long ago, I feel a bit out of touch with things, but just wanted you to know that you do come out the otherside. I do hope your Gp will explain it a bit better, but also try to find some stuff yourself, so that you can ask questions when you do see the consultant/doctor.

    I had a thyroid scan, an ECG, my blood pressure was monitored and I had some other heart investigation - all apparently routine investigations for overactive thyroid. The betablockers migh cause you to feel tired and \"foggy\". Perhaps you need to chat with the GP a bit more about your panic attacks - I think they are not necessarily caused by the thyroid bit - I do remember feeling as though I could not concentrate for a single minute. had moved house at the height of my problem and walked in circles because I could not decide where things could go or anything as I was going so fast!

    hope you feel better soon, and hope I haven't gone on too long and that it may make you feel a bit supported!

    M

  3. Hi Ellen. Sorry to read that you are feeling bad. Your consultant now seems to be treating you by what is known as the 'block & replace' method. It's a way of treating overactivity by blocking the over production of your own thyroxin with carbimazole and at the same time supplementing you with levothyroxine. It's a method used quite widely I believe but I do not know in what circumstances this method is chosen over regular 'anti thyroid drugs only' treatment. Your consultant really ought to have explained it to you. As Mariannie says, please ask your GP for more info on this. With this thyroid thing it's important not to be afraid to ask questions and be prepared to hassle your GP and specialists for answers. And, its quite important to read and search the net for all the info you can get on Graves.

    When I was diagnosed 2 years ago I was literally on my last legs - all my major organs were in meltdown and I was whisked off to hospital as my heartbeat and thyroxine levels were off the scale. The consultant in hospital promised that he would make me feel better than I had felt for years ( he thought I had gone undiagnosed for years) and I didnt believe him because I felt so ill that I couldnt remember what it was like to feel well (if that makes sense?). After only a few weeks on Carbimazole - I started off on 60mg per day and this was gradually reduced as my levels came down - I felt really well and all my organs had returned to normal. As remission is highly unlikely for me, I had a dose of radio active iodine in November 2008 but it did not work for me so I am still dodging along very happilly on 5mg of Carbimazole per day. I may have a second dose of RAI later this year - will probably work 2nd time I'm told. I still see that same consultant every 2 / 3 months at Endocrinology clinic which is great because he saw me at my worst and has been with me on my thyroid journey. He really did save my life.

    If you are underactive at the moment that will be why you feel foggy and hopefully once your medication is correct you will start to feel better. You will find over time that you become really in tune with your body and will learn to recognise certain symtoms and feelings and you will quickly know when you need blood tests done to check where you're at and get your medication re-jigged if necessary. Finally, please rest and sleep when your body tells you it's needed because it really does help.

    Never apologise for moaning - we all do it!

    Take care of yourself and let us know how things are going.

    Lotte.

  4. I cant thank you both enough for replying and giving me some reassurance. I think I will call my GP on Monday and sit down and discuss this with him. This disease is horrible because to most I look perfectly fine but inside I feel like I am falling apart!

    Is anxiety not a normal symptom as my doctor thought it was, but who knows!

    I just want to feel 'normal' although forgetting what that feels like!

    Thanks again Lotte and Marannie for taking the time to reply

    Ellen x

  5. Hello Ellen, Sorry you are having such a rotten time. I was diagnosed with over active thyroid a couple of months ago. I went to the doctor with anxiety and panic but specifically requested a thyroid function test as I had lost weight and felt dreadful. The only thing that has helped me(apart from the medication) is as Lotte says, rest and take a nap when you need it. It seems to slow everything down. I made the mistake of trying to carry on as normal and found that my heart was irregular and pounding and I felt so ill. In the end, I had to give in and admit that I wasn't well. The beta blockers have helped such a lot and whereas I felt ill every day at one time, I now only feel ill some of the time ! You won't always feel this bad, just hang in there, it does get better !. Take care. Ps. I have done quite a bit of moaning on this site, and everyone has been really good about it !

  6. Thank you Bess there are some lovely people on here smile

    Did your doc think that the anxiety was your thyroid, I am worried I have two things going on here!! I have given in to it too now and am resting up and my family are being really good and looking after me. I was put on betablockers too but only 20mg twice a day, I asked the consultant how long I would be on them and he said to reduce them when I felt I didnt need them anymore!!!

    I hope that you continue to improve x

  7. Hello Ellen, I think my doctor thought I was just suffering from anxiety as I have had anxiety and panic in the past. I was certainly scared when I went to him because my heart rate was so high. I suspected thyroid problems because I had noticed for a few weeks that my pulse was fast when it shouldn't have been, i.e just sitting reading. Also weight loss coupled with the fact that my daughter and granddaughter both have thyroid problems. I suspect that even when my thyroid has settled down, I may still have anxiety for a while. I noticed that you are only on 20mgs of betablocker twice daily. If this is Propanolol, this is a low dose, most take 40 mgs. twice daily so it might be worth having a word to see if you can increase this if it isn't doing the trick. Don't be in a hurry to come off it ! ! I asked to stay on it for a while to help with the anxiety which I think isn't just due to the thyroid. All the best, keep in touch. x.

  8. Hi Ellen - I'm pleased we have been able to help you a bit! I didn't know about the carbimazole and thyroxine at the same time as explained by Lotte. I think my problem was too long ago and there has been new developments. Also it does show how fine the line is, getting the radio active dose right. I was zapped and Lotte's didn't do the trick. However, I still wouldn't have mine any other way and am pleased that was the treatment my consultant suggested.

    I think panic attacks are partly linked to thyroid problems because your heart rate goes up so much and it makes you feel so unwell, and agitated all the time, that you don't really know what you feel!! All I know is, an anxiety type feeling is one of the worst feelings you can have.

    Please let us know what your doc says and if it is a helpful discussion. Fingers crossed it will be.

    mariannie

  9. Thanks for replying Bess and Marianne I will try and get to my doctor this week, and will keep you updated as to how things are going.

    This forum is so helpful and really makes me feel like I am not on my own.

    Take care, Ellen x

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