Am still awaiting diagnosis, but have been put on Carbimazole and Diltiazem since last week after 2 trips to A&E, resting heart rate of 120, bloods show TSH: <0.01 T4: 51
I have been on Carbimazole for a week... Just wondered, how long (ish) for the heart rate to go down, and tremor/shaking and exhaustion to bugger off?!
I am struggling to take Diltiazem, its making feel REALLY bad, like I HAVE to stay in bed (which is impossible with 2 kids)... (Betablockers were not prescribed as I have asthma)
So I admit, I have been irregular with the heart meds as I cannot function, and unless I am lying down, my heart pounds away.... Is this dangerous?
BUT! I take the Carbimazole as prescribed. Also, the consultant at A&E said it would be fine continue training Taekwondo... Its quite a full on martial art. Is he correct? Really? With an elevated heart rate? When I asked him this, he just said, yes, the heart elevates with exercise anyway...
So, I am hoping someone will tell me some good news re heart rate/Carbimazole working to get rid of these horrible symptoms!! And exercise? Will I ever be able to to train strenuously again?
This is a rough ride, this thyroid business
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wildpoppy
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Please do not exercise whilst your resting heart rate is above 100 you are putting your heart under extra strain when it is already struggling. You can do serious long term damage to the heart muscle. My cousin had Graves' disease and worked as a labourer undiagnosed for a few weeks in his early twenties, he is now 32 with long term heart failure caused during that time. I am sorry I don't know how long before the carbimazole works but hopefully someone else will know. Take care.
Wow, I'm so sorry for your cousin... Awful. Thanks for replying... I can't believe the consultant told me it would be ok? May I ask ... a resting heart rate is lying down isn't it? Thank you for advice, sincerely appreciated
It can be lying or sitting, basically your heart rate at rest, so allow time for heart rate to settle before taking pulse. It is ideal to take it on first waking up whilst in bed, but it can be taken throughout the day for comparison. Good luck.
Thank you, I took it this morning after sleep, 96! Its come down from105... But its never that low when I am just sitting... I have only been on Carbimazole a 10 days though....
A maximum safe heart rate depends on your age. If you google 'maximum safe heart rate' you will see what is recommended for aerobic exercise and the top limit. If you are young and otherwise healthy you are probably safe to exercise within those limits, and stopping all exercise suddenly isn't good either for physical and general well-being reasons.
As Windowawe says, tell your doctor about the side-effects you are experiencing and see if he can prescribe an alternative.
Yes thank you... I am 43 years young! My max heart is 175, but you should only exercise to 85%. The thing is I hit my 85% just walking slowly, making tea! Resting rate after sleep is 96 at the moment... My concern was whether is safe for the heart to continually pump all day long at 120-130... ( thats me just slowly making tea, kids breakfast!)... I'm worried that its too high for too long.
The carbimazole should bring that down before too long. They normally prescribe quite a lot, more than you need, then either decrease the dose or top you up with Levothyroxine once you become hypo.
Hi wildpoppy, how much Carbimazole have you been prescribed daily ? When I was first diagnosed 3 years ago I was put on 40 mgs daily and it took about 2/3 weeks for my everything to settle down from "scary" to "able to cope with" stage. You definitely should NOT be doing anything to make your heart rate go up. Just getting out of bed and walking steadily around the house was an ordeal for me and for most of us with this thyroid problem. Going up stairs to bed was THE worst experience, getting so breathless and hyperventilating was so scary ! It does get easier BUT you must ensure/insist that you get the treatment and care you need from your GP and Endo at all times. Unfortunately my experience with GP's and Endo hasn't been the best due to lack of communication between them regarding my treatment and I am still being treated 3 years on since diagnosis.
Thank you SO much for your reply. Just knowing that someone else has felt the same (even though I wouldn't wish it on anyone)....You have just described ME! Thats exactly how I am now. It is SO scary.
Especially when you have considered yourself fit. Its horrible. Making my sons breakfast and lunch is exhausting, and I need to lie down for an hour after. And the stairs... well, honestly, I am in exactly the same position. I'm on 40mg daily, like you....I am 10 days into it, and the tremor/shaking feels worse... Even my legs shake when I bend them, so I go down the stairs on my bottom.
I hope to feel manageable soon...so perhaps another week until things get better? It was 2 A&E trips for tachycardia that got me onto the Carbizamole... And I am still waiting to see an Endo...
My GP is utterly useless... She has tried to send me to A&E twice when I have asked about changing my heart meds?! I reluctantly went to A&E once last week after GP sent me there with a letter, they practically kicked me out and sent me back to GP! Joke. Although not funny obviously!
I am sorry you have had such a poor experience with healthcare, though unfortunately I am not so surprised. So how are you 3 years on? Do you manage to live a 'normal' life, or do you still experience symptoms?
Thank you again, sincerely... I do hope you are well
Hi Kimmy, I was diagnosed 3 years ago which is when I had so many symptoms that I just couldn't cope anymore and I thought I was going to die, especially the being unable to walk further than 10 steps without being out of breath ! In hindsight I see now that I had probably had Hyperthyroidism for a number of years but only having a few symptoms that I could deal with I didn't go to the doctors until 3 years ago at which time I had gone from a size 10 to a size 6/8 and had gone from over 8 sts to just under 7 sts ! I had heat intolerance, racing VERY strong thudding heart beat, shakes, anxiety, racing thoughts, exhausted but couldn't sleep, thinning hair, muscle waste/weakness, vision had become blurry and double vision, seemed to also get a lot of colds/chest infections. The list of symptoms seemed endless ! I was put on 40 mgs Carb at diagnosis and then when I got my appointment with the Endo a good few weeks later I had gone from HypeR to HypO so Carb was stopped for a while. Then was started on Block & Replace - 40 mgs Carb and 75 micrograms Levothyroxine. This went on for over 20 months. Both meds then stopped by my GP to see if my thyroid would behave - it didn't and within 10 days I was HypeR again with a vengeance ! I am now trying Carbimazole Titration - and am down to just 5 mgs daily and so far so good BUT only just had relief from the symptoms of breathlessness/anxiety/panic and all due to being over-medicated for the last 3 years !! Lots has gone on in-between time i.e. referred by my GP for "therapy" for anxiety because they do NOT relate to the anxiety/panic/phobias being symptoms of this horrendous disease (they are useless or should I say mine is) and the latest was being sent for an ecg because of my heart rate. I am taking a low dose Beta Blocker for the heart issue.
Whoa, Christine... the symptoms you describe are what I am having, even down to thinning hair... Although I don't think I have had them that long... Just possibly last year or so? I have had 4 ECG's in 10 days How can they not relate anxiety to Hyerthyroidism??? Really?? Honestly, modern medicine has a lot to answer for... Don't get me wrong, it has its place, in E,regency situations, but I am believer they are not great with 'chronic' illness.... I am tempted to find myself a functional doctor... I am sorry you have been through so much, it's not fair. So the heart thing... Surely the meds for thyroid would calm heart, will you be on beta blockers indefinitely? I had to cut caffeine 2 years ago due to racing heart... And now, Hyper aside, if I eat chocolate, or have anything with a small amount of caffeine, my heart goes super tachy. Even last night, lying in bed I ate a chocolate covered rice cake, my heart went from 104 to 128... For 3 hours! I am very sensitive though.
I sincerely hope you are on the right path now, and wish that you eventually go into remission from this horrible nasty illness. Thank you for taking the time, its so reassuring to speak to someone with same symptoms... I feel like perhaps I won't collapse after all... Just got to stick with it for now, thank you, hugs... Kimmy
Hi Kimmy, sorry had to cut "short" my last reply as I had to go out. The initial anxiety at diagnosis "they" do correlate with Hyperthyroidism but once you are on medication that goes in time. However, both Carb and Levo can cause palpitations/breathlessness, especially if you are over or under medicated on them - I was over-medicated and left on both of those medications for too long because there was little or no contact regarding my treatment between the Endo and my GP i.e. my GP had not been informed by my Endo that my treatment had been handed back to my medical practice for 6 weekly blood tests and dosage of meds adjusted if necessary. As I was "green" about Hyperthyroidism I just thought that I felt so ill because of the disease itself and that in time the meds would make me feel better but I just felt rotten all the time - until I found out that I'd been left basically untreated for over 12 months at that stage and kicked up a fuss about the neglect !
GP's and Endos (mine) have been useless and I didn't even know until 18 months after diagnosis that I actually had Graves disease, someone on this forum suggested I was and this was confirmed by my Endo - he hadn't bothered to tell me ! He also hadn't bothered to tell me that Graves is a life long disease. There was I at diagnosis thinking OK, I take these tablets for a few weeks/month or two and I'll be back to normal !! They don't tell you much at all and everything I know about it now, I have learned from spending hours of research and from the very knowledgeable people on here !
Oh thanks windwawe! I will ask at my Endo appt for Cardicor... I was told there were no beta blockers or asthma sufferers... Honestly, we really do have to be advocates for own health?! Thanks for that, appreciated
Graves is a terrible experience, I understand you all the way as I have been through the same you and Kristine experienced. The heart problems were the worst for me and once I was prescribed Carbi it immediately started to help.
It took me 5 weeks to achieve full good blood results. Carbi works fine, it stops the conversion of iodine from turning into thyroid hormones. However, it is a bomb and it can be difficult for some people to deal with the side effects.
In the end, my personal experience with Carbi turned out to be awful because I had serious allergic reaction at 10 weeks of treatment and I was hospitalized and could have died of it had I not an experienced and fantastic Endo guiding me. ( Sometime after my hospital episode I met someone whose sister died of the same reactions I experience from Carbi treatment because she was treated by emergency room doctors, inexperienced doctors, she died due to complications of allergic reactions to Carbi).
About me:
Had Graves for years and was in total ignorance of the effects of the disease even if I had all the symptoms of Graves, except the eye.I had excuses for everything as I had lived with some of the effects for decades. At 45 years I was as thin as a person with terminal AIDS (I can't even look at pics from that year today) and I swallowed all the bad feelings with help from my full schedule graduate student life.
In February 2008, after almost dieing from a a 10 day Thyroid Storm I ended up in a emergency room, no one knew what I had. Hallucinations, extreme high fever which would not go down anymore, heart about to explode and intense body pain were the worst. Couldn't walk to toilet without feeling my heart would explode.
Fortunately I was taken to an experienced Endo, professor at the university hospital, and he guided me. All the exams showed Graves and after the storm I notice the huge goiter on my neck, it exploded during the storm days. It was so big that I even had difficulty swallowing. I was prescribed Carbi, felt good immediately but later on came the reactions. The worst days of my life. Heavy urticaria I have even seen and the most scary paralysis of arms and legs. Couldn't move, nor walk and that was scary.
During the crisis, one shouldn't take anything. Have to wait in a hospital bed, in observation. The unexpected interactions with other drugs are killer. Have to stop Carbi and wait until all the bad effects go away. Some light steroids might help the pain. Not much else.
After the allergy, I applied for a deadline to deliver my thesis at the university and got one. Took some steroids and waited some time to recover and start on Radio-iodine. The hormones go crazy next day after stopping Carbi. It was heavy Graves all over again.
Once in crisis, no walk, no effort, no exercise allowed. Surrender to the sofa. if you have small kids, call for help. You should not do anything. No stairs. I remember being left alone waiting for the lift to go up and down one flight of stairs. All my colleagues would laugh. Thin and lazy they thought.
My tips:
Take Carbi but keep eyes open for reactions. Specially itching, muscle/joint pains and sore throat.
Stop immediately if those come to happen and persist for more tha Two hours. Don't take any other drug.
If you don't like your Endo, find another one.
Don't do a thing. Don't lift a finger. Let the chaos grow around you. You don't need a tidy home if cleaning might put your life in risk. No efforts.
Call for help. If you can afford, pay a maid or a helper, make husband and kids work.
Grave is deadly serious.
Carbi is to be taken for years. I was prescribed for four years, I could not take it for three months. You might start considering Radio iodine. Life with hypothyroidism is not perfect, but it is better than Graves.
I am slightly worried now, as although my heart rate is beginning to come down, I am experiencing rashes (hives) that last over 2 hours.... Is this dangerous then? I also feel slightly breathless for a while...
I haven't had sore throat, but my muscles do ache, although I thought that was because of the graves?
Itching and joint pain are side effects and you might have them for hours, but prolonged time of it can be a bad sign.
These side effects might come and go and not seem scary. However, in my experience, they got worse and worse and turned into a horrible urticaria, which in a couple of hours took my entire body, my back was immediately filled with bobbling rashes itching like mad and burning and the pain in my joints became so strong that paralyzed my arms and my legs. I stopped the medicin right away and went to the Emergency room immediately. This all happened in one morning. From itching during breakfast to checking in the emergency room by lunch time, members paralyzed.
But as I said, the bad effects came after nine weeks of treatment, when I was feeling really happy because the Carbi was putting everything on place. Before that I felt nothing.
The thing is, if you have Graves, Carbi is life long treatment which might evolve into a type of treatment called "block and replace" which you probably have already heard of. With Carbi You block your body from converting iodine by into thyroid hormones like crazy and replace the hormone with synthetic Levo. Since it is very difficult to reach ideal hormone levels with optimal doses of Carbi, doctors choose to replace. But I never got there. I learned this from other people I met, in the last eight years, who went through "block and replace" thing.
I tried another drug which also caused itching after 8 to 9 weeks, light itching, but Inwas so scared that I couldn't handle the risk. I chose to went take Radio-iodine. The only bad side of it was the shrinking of my goiter which was very painful. Even my Endo did not expect that it would be that painful. I was there, radioactive and isolated in a room while the base of my neck felt like being squeezed like an orange to make juice. I took pain killers for that.
Give Carbi a try, it works very well and if you don't have serious effects you are lucky and should try the best you can to keep your thyroid working on its own with little help for drugs.
Honestly, in the first years of my hypothyroidism I was relieved to be free from so many problems I had that were caused by Graves. I was sooooo slow to notice I was sic and because of that I put myself into the most horrible thyroid storm before I found out I had Graves. Too busy I guess. Anyway, now I struggle with the changes and the terrible effects of hypothyroidism and the troubles of living on the other side of the road...
The thing is, once you got thyroid problems, it is a chronic lifetime trouble. For what I have learned, we are screwed for life and have to try to find the best way to live with it.
Side effects of drugs are dangerous, Graves is dangerous but give Carbi a try. And don't do any exercise!
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my last reply as I had to go out. The initial anxiety at diagnosis "they" do correlate with Hyperthyroidism but once you are on medication that goes in time. However, both Carb and Levo can cause palpitations/breathlessness, especially if you are over or under medicated on them - I was over-medicated and left on both of those medications for too long because there was little or no contact regarding my treatment between the Endo and my GP i.e. my GP had not been informed by my Endo that my treatment had been handed back to my medical practice for 6 weekly blood tests and dosage of meds adjusted if necessary. As I was "green" about Hyperthyroidism I just thought that I felt so ill because of the disease itself and that in time the meds would make me feel better but I just felt rotten all the time - until I found out that I'd been left basically untreated for over 12 months at that stage and kicked up a fuss about the neglect !
Excerise and hyperthyroidism 
Carbimazole?
Coming off carbimazole
Bloods a month after taking carbimazole. 
