Just diagnosed

Have been feeling very tired and lethargic, also have noticed that I have a slight tremor and have lost about 9-10lbs quite quickly . I am 67 and consider myself to be reasonably fit.

So, booked an appointment with my GP practice , had blood tests taken and on 28th Dec phoned to see if results had come back.

I was asked to come in to speak to a GP who would discuss my results and hence I was told that I had an overactive thyroid .

Quite relieved to be honest as at least I know why I felt so tired etc, etc .

My readings are ( hope I've got this right ) T4 25.5, T3 13.0 and TSH 0.05,

I am on Carbimazole 5mg and take 3 tablets a day dropping to 2 tablets a day after 2 weeks. I started taking the tablets on 28th Dec

I have another blood test booked for 16th Jan and will then have to book a review with my GP when the results are to hand .

My GP is also booking an appointment for me to see an Endocrinologist at my local hospital .

Does all this sound to be the normal procedure ? I do feel slightly better and have not lost any more weight , in fact I have put on about 2lbs but it's been Christmas !

I'm not sleeping great and itch all over at night , face, leg, back , arm . Is this normal ?

I am also on statins and 1 tablet for blood pressure per day since I had an bleed behind my eye just about a year ago .

I visit the eye specialist at the local hospital about once a month and have been having injections in the eye although improvements have meant that this has not been necessary for the last 3 visits .

I visit the eye clinic again in February .

Apart from the prescribed medication is there anything I should be doing to help my condition with regard to diet etc.

On my next visit to my GP what questions should I be asking ?

Any advice would be much appreciated .

5 Replies

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  • Iwelcome to the forum. Glad you have found us as lots of good advice around. Having said that I am underactive so not the best to give you advice but your doctors is more helpful than many and I know he is doing the right things to help you so that's really good. If you post any results in the future it will be helpful if you put the ranges withvthem. They are usually in brackets after the reading. You weren't to know but ranges differ from lab to lab do it's easier for others to tell how nearcyou are within your range. You may find your other problems improve once you are on the right track with this.

    Don't forget to tell the eye doctor of your diagnosis as thyroid problems can affect eyes as well. I'm pleased though that you want to know such things re diet etc and you sound very upbeat as well and I'm sure someone will come along soon who is more familiar with your disgnosis. Just wanted to say hello!

  • Hi,I'm 57 and I took hay fever tablets for the itching,I too lost weight,then put it on rather quickly,so the tablets were reduced! My hair also started falling out! It's all most distressing. Hope you feel better soon xx

  • Your treatment sounds pretty much like mine was. I lost weight, lost muscle power, if I got down to floor level I had to be helped up again. I had the shakes - big time! My heart pounded like mad. I'd had all that for ages but any time I saw the doctor I was fobbed off. Eventually things got so bad that my symptoms couldn't be missed plus I saw a different doctor who knew what was wrong right away. I saw her on a Wednesday, Thursday I had bloods taken and on the Friday I came home and found a message telling me I had a very overactive thyroid with antibodies, she had left a prescription for carbimazole at reception fir me and had made an appointment with an endocrinologist.

    That appointment took three months to come through, that was about average at that time, don't know what the waiting time is now.

    My doc started me on 20mcg of carb a day. I had more bloods done after four weeks and got a letter from my endo telling me to double up my dose of carbimazole. I did that for two months without another blood test and was totally hypo by the time I saw the endo.

    At that point I was taking 40mcg carbimazole and added fifty mcg levothyroxine into the mix. I kept taking the carb the whole time I was being treated but my levothyroxine was increased until I was taking 75/100 mcg alternating a day as well.

    Then one day I went along and my bloods were where the endo wanted them to be and I stopped everything at once! That took about a year from first being diagnosed.

    When I started on The carbimazole the pharmacist told me to take a high dose of vitamin C along with it which I did. I took a thousand mcg slow release bit C with zinc. I also took CoQ 10. I tried to eat well. Lots of fish and vegetables, I kept going to my gym although I did very little that was energetic but I fooled myself into thinking that I wasn't feeling as bad as I felt because I could do normal things. Same with Pilates, my Pilates teacher is aphysiptherapist so I was well looked after.

    I kept a notebook with all my blood test results and their ranges. I pushed to have my B 12, vitamin D, ferritin and folates checked. Had to pay privately for my vitamin D tests though. You want all of those to be high in their ranges - even if your doc says they are fine! Always ask for a copy of your test results with their ranges - you are entitled to have them no matter what you are told. Some surgeries charge but I've never had to pay and anyway, you can ask to see them and write them down.

    I used to keep a list of any questions I wanted to ask - I kept them brief. just in bullet point form. I used to make notes during my endo consultation too. It shows you mean business.

    I read as much as I could about the thyroid and Graves' disease which was what I had.

    I've since gone totally gluten free in a bid to reduce my thyroid antibodies - it has worked (I test regularly with Blue Horizon home fingerprick tests) but then maybe they would have reduced anyway, I've no way of proving it but I'm sticking with being gluten free anyway.

    Think that's about it. Be kind to yourself, you are really quite ill even if you don't feel or look it.

    I was in my mid sixties when my Graves started. Was taking lisinopril for high blood pressure, couldn't take beta blockers for the palpitations because I have asthma.

    Nobody mentioned Graves Disease to me until I happened to mention it and the assistant endo I was talking to said that was what I had. I don't think he would have mentioned it either if I hadn't brought it up.

    Do they know what caused the bleed behind your eye? Are you diabetic or anything like or is it AMD?

    My vision was quite blurred at times - in fact I had been complaining about it for a while before I was diagnosed, so I think it was probably all connected although I don't have thyroid eye disease.

    I have really ridiculously dry eyes but I always have had. The blurred vision and I used to get a sort of double vision / after image if I read firtio king. I would watch the credits roll and I would see the writing plus a shadow of it just below it.

    As time had gone by all that has improved - well it has improved as long as I keep using preservative free dry eye drops. I'd tell your eye people you have an overactive thyroid.

    Good luck with it all - go out and buy yourself a page-a-day diary and start jotting down a few lines every day - some days you might not write anything- about how you are - you will find it very useful if / when you make changes to your meds. Also to jot down anything interesting / important you read about the thyroid.

  • Thank you , all who have replied .

    A bit of a jolt to read " be kind to yourself , you are really quite ill even if you don't feel or look it ".

    On reflection I suppose I am . Still , will keep a daily record and will definitely try taking high dose vit C .

    So, Without being over dramatic I start on a journey and from what I can see it isn't going to be a short adventure .

    Thanks again for taking the time to reply and for the advice and good wishes .

  • Sorry if that was a bit blunt. I lost so much weight that at first glance I looked better than I had done for years. People who didn't know I was ill kept saying that I was looking great. I suppose I did look great on the outside but inside I felt absolutely awful, I don't know if it was the fact I had Graves or the fact that I had battled on for so long before being diagnosed. I'd been to a doctor at the end of the August before I was diagnosed and the doctor, listened to what I had to say, looked at me like I was a complete hypochondriac and told me 'you're needing a holiday' and sent me off without doing anything more, so by the time I was diagnosed (different doctor!) it was probably easy because I was in a state of collapse.

    I don't know what is average but I think you're right got about it taking time. The first endo I saw explained about how I would be treated and talked about the different methods - titration, block and replace, RAI and total thyroidectomy then said they treat 'the fast way' with block and replace.

    Then he told me it would take almost a year which I didn't think was particularly fast but which as it turned out was what it took as I was diagnosed at the end of November 2012 and the block and replace was stopped almost a year later on 7th November 2013.

    Good luck on that journey / adventure :)

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