Overactive thyroid

Hello. I was diagnosed overactive last summer. After a hosp appointment i was prescribed carbimazole 40mg. Oh my god after 7 days on it i had put on 7 pounds, i was falling asleep in work i was hugely emotional. I got referred again to the hosp after telling my gp i couldn't take it and couldn't function at work or home with 4 kids. Next i was put on propylthiouricil again after 10 days i was a sobbing dysfunctional mess. Again I was referred to hosp and spoke at length with the doc who then prescribed me just 5mg of carbimazole and referred me to the surgeon. In december my levels were 53 then last week were 72 so upon meeting the surgeon last thursday i agreed to a total thyroidectomy but because my levels are so high she's put me on 40mg of carbimazole. The op is booked for 22nd of Feb and i have to say i totally don't want to go through with it now. I also don't want the radioactive drink. I figure if the carbimazole is going to make me feel like crap anyway i may as well stick it out and try the block and replace therapy which i should have done to start with. I am so worried because even after 5 days i feel morose and getting foot and toe cramps and feel so miserable! It also seems to make my palpitations worse even though i'm on 60mg of propranalol. The thing is apart from the racing heart i have had no other symptoms. My hands don't shake, my eyes don't bulge, my neck looks normal, i don't sweat or have the runs. The only other thing is it's very hard to get up after kneeling or squatting. I feel so angry that this has come back after getting rid of it aged around 30 after about 3 years of having it. I am now nearly 45. So really this is me getting it off my chest because i'm so scared of trying to manage this illness!

13 Replies

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  • Welcome to the forum, Angeljcake.

    The muscle weakness, cramps and racing heart are all symptoms of hyperthyroidism. Even if you find the symptoms more tolerable than the anti-thyroid meds you must bring down your thyroid levels one way or another or you risk thyroid storm which is a medical emergency, and eventual heart arrhythmias and osteoporosis.

    thyroiduk.org.uk/tuk/about_...

    Your options are limited. Either you tolerate sufficient Carbimazole, Propylthiouracil (PTU), or Carbimazole+Levothyroxine (Block and Replace or B&R) to reduce your thryoid levels, or you will have to opt for RAI ablatement or thyroidectomy, both which will make you hypothyroid.

    I suggest you wait and see how you are tolerating 40mg Carbimazole over the next 3 or 4 weeks before cancelling your surgery. In that time you may have adjusted to Carbimazole, your thyroid levels will be lower and symptoms may be improving, and you may feel you can continue to cope on anti-thyroid meds or B&R. Thyroid levels will need monitoring every 4-6 weeks on Carbimazole/PTU and dose adjusted to prevent you becoming hypothyroid but monitoring will be less frequent if you are on B&R.

    Do you know whether you are positive for Graves disease? Remission is rarely permanent in Graves patients.

    thyroiduk.org.uk/tuk/about_...

    Thyroidectomy may be a better option than RAI for Graves patients as RAI can worsen thyroid eye disease. Thyroidectomy will also cause instant hypothyroidism and you will be started on Levothyroxine replacement the next morning.

    A major problem with having RAI is the 21 days quarantine restrictions requiring you to distance yourself from children under 18 and pregnant women. RAI can initially increase hyperthyroidism as destroyed cells dump hormone and it may take several weeks/months for hypothyroidism levels to increase sufficiently for Levothyroxine to be prescribed.

    If you have any doubts about having thyroidectomy or RAI tell your surgeon/endo you want to cancel and may want to reschedule at another time. There's no going back once your thyroid is removed or ablated.

    _________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hi AngeljCake, I was diagnosed with hyperthyroidism/Graves in summer of 2013 and had many symptoms including strong thumping racing heart/pulse. breathlessness, muscle weakness, extreme fatigue, heat intolerance and extreme loss of weight (and I had no excess weight to lose). I was prescribed 40 mgs Carbimazole by my GP to take until an appointment with the Endo came through. I didn't start feeling better until I had been taking the Carbimazole for about 3 to 4 weeks and then I began to feel much better. So I would give it time to get into your system before making any decisions for RAI or surgery. After my first appointment with the Endo, he put me on the Block and Replace treatment (taking 40 mgs Carbimazole and 75 micrograms Levo Thyroxine. Unfortunately, I didn't go into "remission" when the B & R treatment was stopped by my GP, however, I believe she stopped it at the wrong time as I was NOT feeling well and had some symptoms BUT she just went by the range shown in the blood test ! My Endo suggested I have RAI, but I have told him I want another chance at B & R, so that is what I am doing at the moment. Unfortunately, my last 2 appointments with the Endo have been cancelled due to him being ill. I am still having a couple of symptoms so probably need the medications "tweaking" but will have to wait for an appointment as my GP's don't seem to know much about this condition other than being able to prescribe the initial Carbimazole at diagnosis. Hang on in there and see how you feel after a few weeks. Hope you feel better soon.

    Christine

  • Hi, I was diagnosed with Graves Disease last March, and I have tried to find a natural treatment as I worry about the side-effects of anti-thyroid drugs. It turns out there is a plant called buggleweed which has been used since antiquity as an anti-thyroid drug. I have seen a herbalist specialising in endocrine disorders and I shall start using a herbal tonic which uses buggleweed and other plant extracts to see if I can switch to the natural treatment. I shall update the community in a few weeks time to see how it goes, but I thought I should mention this here because you seem to not be able to tolerate the anti-thyroid drugs and maybe you would want to make sure you have tried all available options before going for RAI or surgery.

  • A big thing to learn from this forum, is that once you have a thyroid removed and are hypothyroid, you will have to treat that with medication for life. Doctors often seem to think this is a very simple matter, but many people here have a lot of difficulties getting better.

    Had my thyroid removed in April 2013 (for a different reason)and have been mostly bed bound for that time. Am currently self medicating, because my consultant really knows nothing :p I think I've been unlucky, but most people who have TTs do not have the same quality of life they had before. My guess from going around forums is you can hope to have about 80% of the energy and so on.

  • My wife had same experience. Carbimazole worked wonders instantly. She went from extreme Hyper, nervous, shaking to feeling fantastic in 2 days.

    By day 4, she was a zombie!!!!

    I consulted ladies from TPA forum & they gave fantastic advice. They said she had to listen to her body. She knew what Hyper feels like & now what Hypo feels like. Adjust dose yourself depending how you feel.

    My wife found that 5mg was the right dose. The Graves had dropped her weight to 7st. These Endos will give you a dose & say see you in 6 months. I don't think they dose on body weight, so a 7st woman could be given the same as a 12st one. How does that work?

    Anyway, my wife no longer needs any Carbimazole. She has it there just in case, but thankfully, she's been fine for over 3 years. So if I were you, I would try gauging your own dose before doing anything drastic!

    Good luck!

  • Hi knackersyard, I'm very interested in your response and hope you don't mind if I ask a couple of questions about your wife being in remission from Graves for over 3 years - I failed to have remission last year when my GP stopped my Block & Replace therapy (and I firmly believe she was wrong in doing so at that time). Was your wife just on Carbimazole or Carbimazole and Levo Thyroxine ? Being on the Block & Replace treatment (again) I am taking both medications but I understand that there are two treatments of medication used here in UK - the B & R treatment and Carbimazole titration treatment. I have had 2 occasions of approx 2/3 months when I have been taking ONLY Carbimazole and I have to say that I felt much better than I did/do when taking the thyroxine as well, however, my blood results showed that I should NOT have been feeling better as they were showing I had gone from HypER to HypO - admittedly I WAS feeling extremely cold all the time but I did not have the anxiety/palpitations and breathlessness that I experience when taking both meds ! Also, did your wife change her diet to gluten free? Did she add the vitamins and other supplements that are suggested by the many members on this and other forums?

    I would be very grateful to hear back from you.

    Christine

  • Hi Christine

    Absolutely no problem, happy to help if I can.

    My missus Graves all happened very suddenly. She's a real grafter, never sits down, never complains, no time for illness type. All of a sudden she started feeling anxious & shaky. Her weight started to fall off rapidly & she had diarhea. Knowing what bit I knew about endocrine conditions, I sent her to the GP with a list for blood test, which she did. Next thing she had a call from them with an immediate appointment with an Endo. We were in within a week.

    She was prescribed just Carbimazole. Nothing else. Can't remember exact dose, I will check the notes. She was sent home with an appointment for 6 months.

    As I said, within the next 2 days she was saying she'd never felt better!

    2-3 days after that, she was sprawled on the settee & couldn't drag herself off it (that was a screaming sign things weren't right!!!!!!).

    I took advice from a couple of fantastic ladies from TPA forum (Christina & Tess). They absolutely nailed it. This guy had given my missus (a small woman & down to 7st at the time) a standard dose of this powerful substance & expected her to stick to it for 6 months. They just said listen to your own body. You know the symptoms of HyPER & HyPO, cut the dose to suit how you feel & gauge it on a daily basis.. She did & it worked.

    After a few months she was alternating between 5mg & nothing, eventually she didn't need any. Why that is, I don't know.

    Now she is suffering mild HyPO symptoms. Cold, tirdness, but not enough to slow her down. Her TSH is creeping up. I had her do some private testing & she's "Sub-clinical" HyPO. So TSH is like 4 with T3 & T4 in lower end of range. I got her to get the GP to re-refer her to the Endo. He was fairly useless this time & refused her a trial of Thyroxine, but at least wrote to the GP & acknowledged she's heading in that direction & that it should be monitored. If I felt she should be self medicating, she would do it, but TBH, she's fine. She's none stop as it is. I have to stop her ironing Tea towels & underpants (who does that??). We've got our eye on it.........

    Re Supplements, well it was a real task to get her to remember to take stuff. Then she got Breast Cancer (lump now removed & given all clear thankfully). That focussed her mind & now she does take all her supplements without fail.

    Anyway, I'm no expert, but I would urge you to try gauging it yourself. Don't rush into surgery!!!

    Good luck!

  • Very many thanks for your reply, I am very grateful !

    I have no intention of rushing into either RAI or surgery (will only accept one of these if it becomes absolutely necessary).

    As I am taking Carbimazole (40 mgs) AND Levothyroxine (100 micrograms) I have absolutely no idea where I would start in "self medicating" although I know something needs tweaking because I have symptoms of feeling extremely cold, extremely tired (I slump/dip in early afternoon) and anxiety/palpitations and breathlessness. 2.5 years after first being diagnosed I still can't walk further than 50 years without getting breathless, well any exertion including changing a bed ! This could also be down to the extreme weight loss and muscle weakness. Like your wife, I also went down to 7 stones (just under) and from a size 10 to a size 6 and have only managed to gain 4/5 lbs in 2.5 years.

    My local GP's are worse than useless regarding having ANY knowledge of these disease apart from prescribing the initial dose of Carbimazole at diagnosis and my last 2 appointments with the NHS Endo have been cancelled due to him being ill.

    Anyway, thank you again for your response.

    p.s. my mum irons tea towels and underwear !! ;)

    Best regards

    Christine

  • Hi Christine

    Happy to help, but please understand I'm no expert!! I had to learn due to my own "sub-clinical" Hypo & then my wife's scary episode with Graves. Our GP & Endo was as much use as yours. Thankfully, they were helpful & willing. In fact, when I went with my folder & prepared highlighted prints for them, they were very obliging.

    Sounds like you're suffering HyPER & HyPO symptoms. Sound horrible.

    ***My advice*** (please consider advice from others too), would be to drop the Levo & reduce the Carbimazole to 10 or even 5mg. If your Graves symptoms return, titrate your Carbimazole up accordingly.

    I've never understood the concept of Block & Replace, but maybe some here do?

    My wife was maybe lucky that she recovered (for now) on a small amount of Carbimazole. Maybe you will too.

    Good luck!

  • Hi,

    I read that your age is 45, so you will probably be in or approaching menopause which combined with having an overactive thyroid can make it really difficult to get your dosage right.

    I was in the same dilemma as you & the endocrinologist advocated RAI. However, a very wise older doctor at the hospital advised me NOT to have the op & years later, how right he was proved. My hyper has become hypo.

    It would be in your best interest to keep trying to get your dosage right & NOT to have your thyroid removed. Good luck

  • Hi there

    I'm so sorry you are going through all this. As all of here need and give support to others yiu have come to the right place.

    I was diagnosed Hyper/Graves in April 2013. With most symptoms at various times. Carbimazole and PTU & AntenoloI had for 18months. Was in remission for a few months or so then back to Endo for more meds as went Hyper again. Options given were RAI or surgery?

    I didn't want either and took me a long time to decide.

    I am now day 8 since total thyroidectomy. I can say for the 1st time my ankles aren't stiff & my body moves when I do. I know I have a long way to go but in Recovery there was a nurse who'd had it done a year ago & in clinic the other day staff who'd had it done 2 months ago.

    You will hear lots of views here and you have to decide on a tough decision that suits you. I had people tell me different things but in the end I made what I believe is the right one. And for either option it's not an instant answer.

    If you wish to chat further then please message me direct. I'm happy to chat.

    Hope you feel better and all calms down soon. Please take the meds as said above you need to get your levels down.

    Big hug

  • Thank you all so much for taking the time to write replies. I have cancelled my surgery and asked to be referred back to the endocrinologist. I have been taking 40mg for 6 days now as well as my 60mg of propranalol. I have to say my mood is black. Couldn't stop crying this morning. So if this continues i will have to get some antidepressants because i can't cope with the sadness. Can't be sobbing in work thinking really miserable thoughts or behaving like that at home when I have my kids who are 7,9,11 and 16. Thanks again for sharing your own experiences with me. Xxx

  • I know the feeling of palpitations,  they are no joke. My doctor increased my metropolol 10mg to 200 mg and it has been working find for me

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