Diagnosed with hyper/Graves in October, put on carbimazole.
Diagnosed as severely hypo in December, stayed off all meds for 1 month.
Still extremely hypo yesterday so placed on levothyroxine.
Just talked with endo who said I may have a viral inflammation of thyroid, which could eventually be cured. I questioned his earlier Graves diagnosis and he said I had very positive antibodies which they normally expect as an autoimmune thing, not a virus, but I reacted far too quickly to the carbimazole, so he didn't know what was wrong. He said it's very strange and I haven't reacted normally.
Has anyone else experienced this, I am very confused now!!?
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Tibs
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I was diagnosed with hyper in dec 2011 after a virus made my thyroid go nuts. I was given carbimazole at beginning of that month. By the Feb 2012 I went hypo and was then put on levo also. Its called block and replace, which means my thyroid has been blocked by the carbimazole. I was put on 50mg levo a day which has now been increased to 75mg.
My doctor thinks hopefully it should all settle down this year and in a few months we can adjust and maybe stop the drugs. Although he did say I might have to have part thyroid removed if it doesnt settle? Not sure whether I actually had Graves or just over active? Also not sure what I have now? Is it hashimotos or thyroiditus or just hypo?
All very confusing, the one thing I do know is that for the last few weeks I have felt better than I have for a long while.
Thanks chocolate, seems a diagnosis isn't as straightforward as i thought then. I'm glad you're feeling better though, that's the main thing, whatever they want to call it!
It is possible for endos to guestimate that you have Graves when in fact you may be overactive or thyrotoxic due to a virus. Or you may have Graves and become overactive for short spells interspaced with normal levels. This may go on for months or years with periods of both. Likewise people who have hashimotos or are underactive may swing both under and over.
It is not an exact science but If I was you I would ask for further tests by your endo such as antibodies tests or uptake scan.
It is not the norm to go so quickly under what level of Carbimazole were you placed on?
Thanks ginger, I'd just got an understanding of being hyper when I suddenly hypo, now trying to learn all about that now too!
My GP is pretty on the ball actually and she ordered another antibodies test on Wednesday, what is an uptake scan though please?
I was on 15mg a day for about a month, then reduced to 10mg, when levels returned to 'normal', I then reduced my own dose to 5mg about 2 weeks later as I felt that I was going hypo (I was), so came off it completely about a week later, so it all happened pretty quickly.
i was diagnosed hyper in September and put on 30mg of Carbimazole and was told it would take a long time for my levels to come down, particularly as they were so high. My levels very quickly went down to normal and I went crashing through and became hypo. This flummoxed the endo who said this was very unusual (although not that unusual as you and I both had the same reaction!) He diagnosed inflammation and pronounced that I was now cured. As it turned out after more tests I have antibodies for Graves and am back on 10mg of Carbimazole. The biggest lesson I learned is that levels can be very unstable and can whizz up or down fairly quickly in me. I listen carefully to my body and adjust my dosage (with the support of my GP) if I feel changes. My GP has also suggested that I have more regular blood tests while I'm at this stage and she gets the results back to me quickly rather than having to wait a week. Hope this helps, perhaps your GP can do the same. We are unique!
Thanks vintage, it's good to know it's not just me then!! I was having a hard time accepting the fact that it's an illness that can't be cured, so now I've been told it maybe isn't Graves and could just be a virus, I don't know what to think.
Did you have to take thyroxine when you went under? I was prescribed 25mg by GP, but endo increased this to 50mg the next day, but I feel this is too much and I want to take it slowly, but he disagrees, so I'm not sure what to do. I think I'm like you and my levels could shoot back up again very quickly if we're not careful. GP also had me on weekly blood tests but endo won't do another for 3 weeks, I argued with him about this and he said if I felt ill I could request one earlier. GP is very good at calling me 1-2 days after blood test with my results so I'm starting to trust her a lot more than my endo!
Sounds like your endo was trrying block and replace when you take carb and levo at the same time to try to balance you.Some endos use this technique but some just use carb alone.
Just keep having blood tests and see if your body settles down. Like Vintage below you may find that if you have Graves antibodies that eventually you go hyper again and need a small dose of carb to maintain you.
An uptake scan indicates if you have any nodules on your thyroid which may affect how it produces hormones.
Thanks ginger, I only heard of block and replace about a week ago and when I suggested it to GP she said it wouldn't work for me, the endo hasn't mentioned it at all. That's my worry about going hyper again as I was really sick with it, guess as long as blood is monitored regularly that shouldn't be a huge issue though.
Thanks, I had an ultrasound which I think checked for nodules but they said it was smooth, if that's the same thing?
Yes I definitely trust my GP's judgement more than the endo's. When I went hypo I just went down to taking 5mg of Carbimazole a day and my levels stabilised after a few weeks so I didn't have to take anything else thank goodness but that was when the endo pronounced me cured and took me off the medication completely and I went hyper again. For me it's just patience at whatever level I am and waiting for the drugs to do their thing in their own time! Good luck.
Thanks for that. I came off the carbimazole completely but without any medication my TSH jumped from 0.03 to 8.1, dropped to 4.6 (just 3 days later!), then rose to 5.3, (lab range 0.35-4.5) so it's totally bizarre in my mind. I guess you're right and I need to learn to be patient, I'm just worried as I've been off sick 4 months and I want it to all go away now! I hope they get you sorted soon too
So you guys still carried on taking carbimazole even when you were hypo? I asked about block and replace and was told this wasn't suitable as it was too late for that and levo alone was the only way to treat it now?
yes still took small dose which might be like greenginger's maintenance dose. I guess it will take time. I've not taken any sick days as I'm determined not to be beaten by this stupid disease. It's bloody hard carrying on though. I've talked before on here about the fact that friends and family don't get it. I often hear, 'but I thought you were ok now that you've got tablets.' Baby steps, Tibs.
Thanks, that's helpful to know. Tell me about it re other people not getting it! I had no choice about being off work unfortunately, I was off for a month before they realised it was my thyroid, I thought I'd just had a breakdown of some sort! I wish I could be more like you though. I am trying to just take it a day at a time, little things like managing to stay awake for more than 2-3 hours at a time are massive achievements at the moment lol.
I thought I was going crazy in my early days, but through this support group realised I wasnt.
I had to take 2 months off work whilst I was being diagnosed. In the first few weeks I couldnt stay awake and I felt like my body was totally out of control.
I have learnt so much from this website and also learning to listen to my own body.
Now I am on 30mg carbimazole and 75mg levo and for the last 3 weeks I am feeling better than I have for a long time. Also taking vit c, co-enzyme 10 and 3 brazil nuts (for selenium) a day. Take care
Just ate some brazil nuts. What a weird disease this is! wearing twenty outfits in one day because each one is too itchy/ hot/ tight; vacuuming the stairs like a maniac because you can't sit still for two seconds then crashing in a heap on the sofa; trying to make a healthy dinner when all you can do is fantasize about scoffing bags of Haribo; drinking litres of water and not feeling relief; slapping on the makeup to stop the constant boiled lobster look; screaming at everyone in your head and trying to be patient with loved ones when they say the most innocent things (how was your day? MY DAY WAS HIDEOUS!) and then sobbing on the kitchen floor because the recycling bag split and Emeli Sande (who you can't stand by the way) just sang something sad on the radio. Or is it just me???
Awwww bless you hun, no it definitely isn't just you, I can identify with all of that, except the being hot part, I'm sooo cold all the time (although that seems to have got better now I'm hypo!) I can handle the physical effects, I can't handle the mood stuff though, being happy one minute, then screaming at someone for no reason, then crying for no reason!! I was such a chilled out laid back person before all this, I'd not cried in front of anyone since I was a child, now I can't stop! I've destroyed most of my friendships, the only ones who have stuck around are the 3-4 people I've known the longest who understand that this isn't me. I would do anything to find a way to take a holiday away from myself, I don't like me anymore so I can't expect anyone else to like me either!! And not being able to think of the right words or say the words properly has really got to me, I can't explain even basic things very well anymore, if someone is patient with me when I'm having trouble speaking I want to cry with gratitude, if they're not patient then I want to knock them out, madness!!!
yes we do need T Shirts, lol its as bad as having permanent PMT, unless you have that in the mix. The term Graves disease, actually is a unpleasant word, dnt you think? its like something out of the rocky horror show, saying that if you saw me, you would think Im one of the team in the show.
its a good job we laugh, I can only manage to do the time walk and then I collapse. I started to hide sweets and chocs because my kids scoff them and they are all mine!!!!! I sound like I have some kind of eating disorder.
proberly be crying later, its not good is it all of this, My friend had her pigs slaughtered the other day and I cried, I had no bond, but I cried and to top it all my husband came home with bags of sausages, next week is bacon and then chops and I cried lol.
I did ask though could I have the pigs thyroid, umm interesting.
someday I really could scream and scream and scream like the girl out of worzel gummage.
I have flu at the minute, compounding my illness, my husband also as flu and guess what, Im the one who is hyper, cooking cleaning and moaning, whilst the man flu hero is sat with his remote control, there, there, there, can see a explosion coming.
good luck my friend and keep you chin up, Graves is a nasty illness than can be managed but not cured. I am sure I have Hashimotos and graves.
At least Hashimotos is a more glamorous name! I'm supposed to be working form home but found an old freestanding towel rail that someone had thrown out this morning and have spent the day undercoating and painting it instead of working. Oops. Must. Calm. Down.
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