I need advise from hyperactive sufferers.

[dryeye]

after 3 months on carbimazole my numbers were unchanged,so my dose has been upped a lot. Now my nose runs water constantly,my palms go hot pink on and off through the day and in the afternoons my pulse soars dramaticly even though I am still on Beta blockers.and a few of the other symptoms that i had before treetment have come back worse than before i started treement in the begining.I have only been on the increased dose for 1 week and 1 day. Can you get worse on medication

[Fruitandnutcase]

I don't know if you can get worse on carb. I know you can be allergic to it but that is when it damages your white blood cells and weakens your system and you get sore throat, ulcers etc and feel flu like.

I'm don't think I felt that bad when I was on carb. I know I felt awful in the beginning but I don't think it was because of the carb and I had felt so ill before I started taking it I could probably only have felt better.

From what I can remember I was really, really tired, I slept all the time, I cried a lot if anything upset me and I can remember once totally losing it over something that happened, I howled and cried and pretty much stamped my feet so much so that my heart rate was SO high it scared the day lights out of me.

I just felt generally completely rubbish most of the time in the beginning - fortunately my kids are grown up and have left home so I was able to do next to nothing - poor husband pretty much shopped and did everything in the house. After three months I got levo added in along with my carb but it was only when I got up to taking 75/100mcg that I felt better. I would feel fine for about six weeks after every increase then get what felt like hyper symptoms until my levo was increases - it was only really when I got onto a decent dose my symptoms disappeared.

I would have thought the carb ought to have kicked in by now. If you aren't on levo then you haven't even reached the stage I was at when I got palpitations every time I needed it increased but you aren't even at that stage yet from the sound of things. I would have thought the beta blockers would have kicked in and stopped the palps. Could your beta blockers be causing the problem? I've heard some people saying they didn't get on with them. Have a look at the contra indications on the patient information leaflet that you got with them and see if any of your symptoms are mentioned on that - look on the leaflet that you got with your carb see what that says too.

Have you been back to the endo who is looking after you? Or even spoken to their secretary on the phone to say how ill you are feeling and get some advice. Are they intending to do block and replace with you once the carb had lowered everything or will they gradually reduce your dose if carb?

Hope you can get sorted out soon.

[dryeye in reply to Fruitandnutcase]

I dont think I am allergic, my last blood test before the increase included liver function and full blood count. apparently these were fine because endo said so. and also said because I had no adverse reaction I would tolerate a higher dose.My heart rate before medication was 133 resting. after 3 months on lower dose it was 79/84 resting. Now on higher dose it fluctuates between 74/125 also resting. When I say resting I mean sitting for at least an hour. I have not been told if it is intended for me to be on block and replace. but I have managed to get endo to agree to a blood test after 6 weeks this time in case it is wrong again. But it is only 8 days since my endo appointment and i am going backwards (symptom wise) cant get in to see her for 8 months sooooo thought i'd ask if anyone had similar problems. propranolol is a life saver No side effects but without it you can pretty much double the heart rate numbers

[Fruitandnutcase in reply to dryeye]

Sorry, I wasn't any help at all. 8 months seems an awful long time between your appointments. I was seen in February, April, July and November. Eight months is a very long time to be unsupervised. I had a blood test a week before each of these appointments and a couple in between when I felt a bit hyper. You can't possibly wait eight months. Maybe things will settle down. With a bit of luck someone else who is hyper will have a better suggestion.

[dryeye in reply to Fruitandnutcase]

I will be getting a blood test 6 weeks from my last appiontment because icomplained that i had wasted at least the last 6 weeks by not knowing it wasn't working.(I could have been on the altered dose 6 weeks ago). the endo will ring if I need to change anything when she gets the results.

[Fruitandnutcase in reply to dryeye]

Sounds fair enough. Ties in with what I said in my last endo visit - that the way things work with thyroid treatment (it all seems to be done by numbers) they don't really need to see us in person - just get our blood test results and send us a letter telling us what to do. Hope your body settles down soon. Joy's slow release Propranalol sounds like being worth a try.

[dryeye in reply to Fruitandnutcase]

I think I would rather skip the endo altogether and just get the blood results myself then I could workout my own treatment. Both my GP and Endo are strangely reluctant to give me actual results so I have to take a dose of backbone and stand up to them next time.

[Fruitandnutcase in reply to dryeye]

I know, I always think the whole hospital procedure is a waste of time, you get yourself there, then you sit and wait for however long, then you go in and although you are added how you are feeling I always feel it doesn't really matter, your case has been discussed and the person you speak to knows what they are going to say etc - then its goodbye! It could all be done with a blood test and a letter.

Don't know why they don't want to tell you too much about your test results - probably because the ranges are wide and if you are not feeling particularly good you might say you think you might feel better at a different point within the range and they don't want to bother with all that.

You could always do what I used to do - take a notebook in with you with all the questions you want to ask plus I had mine marked out with a column for the test - say T4 or TSH and a gap and another column for the ranges and another gap, then I just asked what the result was and made a point of filling in my results.

Back at the beginning I took a deep breath and asked the receptionist for all of my results and it wasn't difficult, she just said to come in preferably in the afternoon when they were quiet and they would do them for me which they did - no questions asked - no charge. I wrote down all the results and after that I just added to them each visit.

Does them good to see you have a little notebook with all that sort of stuff in it.

[dryeye in reply to Fruitandnutcase]

definately buying a notebook

[Fruitandnutcase in reply to dryeye]

Yes, it's really good. You jot down what you want to know in advance and just leave gaps for the figures you write down, that way you're not fumbling about and then left wondering what things mean when you get home.

I always say that I've written down my symptoms or whatever it is I want to ask because I know I'll forget if I don't and I've never have anyone object. Same with the results, first time I went I asked the doctor to write them down for me but I found it was easier to read if I did it myself and I decided to do the headings in advance so that it was quicker on the day. Hope that works for you.

By the way - do you have dry eyes?

[Joy333]

Hi, I experienced similar to you when I was first diagnosed last year. After 3 months on carbimazole it hadn't touched the sides in lowering my levels so like you the carbi was doubled from 20mg - 40mg. Betablockers (propranalol) are a life saver, I wonder if you might be better on the slow release propranalol which helps keep you more at a constant? I found switching onto the slow release much better.

Do you have copies of your blood results? Have your antibodies been tested yet?

[dryeye in reply to Joy333]

The propranolol was working fine when I was on the lower dose of carbimazole The heart rate is just going eratic since the increse in medication. Do you still need to take the propranolol and has more carb worked for you

[snow31]

Hi,

Sorry to hear you feeling rough since upping you dose. I couldn't tolerate Carbimazole when I was prescribed it last year (ended up on Propolythiouracil) so I am sorry I cannot answer your question.

I think you should ring either your Doctor or the Endo and tell them what is happening to you. Better to be safe than sorry. Don't suffer, keep telling them how you feel as you are the only one who know how you

are truly feeling.

Good luck and I hope things settle for you soon.

x

[dryeye in reply to snow31]

thank you for caring and I hope you are better on the propolythiouracil

[snow31 in reply to dryeye]

Thanks dryeye. Have done my time on PTU now and had mt last tablet just over 2 weeks ago. Waiting for next blood tests to see how im doing. Feel tired again and have just had shingles so not a good start!!

I can't thank everyone enough on here for all they do. I was always on here reading even if I couldnt help. Take comfort on here as they are as good if not better helping us understand what a roller coaster this thyroid can cause. Good luck and hope you feel better soon x

[Fruitandnutcase in reply to snow31]

Do you know there is an injection against shingles? I think it is available to people over 70 but I imagine if you have had shingles you could probably ask to be given it. I remember having shingles when I was about 16 or so and having to go to the surgery every day for a while to be given a B12 injection. That was way back in the 1960s, they probably don't do that any more.

You're so right about the thyroid roller coaster and so right about this site