Please read my previous posts so that you will know something of my 2.5 year journey so far with this rotten disease.
Everyday I read post after post on this forum and Patient UK forum. I am trying to get my head around it all and hoping to educate myself about my disease as in the 2.5 years since being diagnosed (but in hindsight I have probably had the disease for a few (possibly many) years before diagnosis, none of the medical profession have explained ANYTHING to me, nor had I ever been told just how serious a disease it is - only by my own "research" have I discovered this and much more.
My question is this - why are SO MANY fellow "sufferers" of this disease only taking Carbimazole as medication for this AND it would appear at many different less dosages? I do note that some patients are in fact or have titrated the dose of Carbimazole themselves but for the most part it has been their GP's or Endo's who have stated their dose. Some are on 20 mgs and even as low as 2.5 mgs ?
I am on 40 mgs of Carb AND 100 micro gs of Levothyroxine - why do so many patients NOT have to take thyroxine and ONLY Carb ?
When first diagnosed and presented most of the spectrum of symptoms, I was put on 40 mgs Carb to reduce the worst of the symptoms (rapid thumping heart rate/pulse, breathlessness, anxiety, extreme weight loss, heat intolerance etc). This dose worked and the worst of the symptoms disappeared, however, after 2/3 months I became markedly HYPO and had to stop the Carb until my appointment with the Endo, after which I was put on Block and Replace treatment with 40 mgs Carb and 75 micro grams Levothyroxine. During the 20 months of B & R, the dose was tweaked but it was only the thyroxine dose that was changed from 75 to 100 mgs.
If you have read my previous posts you will note that all meds with stopped after 20 months of B & R and I very quickly relapsed into HYPER with a vengeance, was put back on Carb 40 mgs, went extremely HYPO within a month or two and 100 micro grams of thyroxine added, both of which I am still taking at least until I see my Endo again on 30th December.
Can you lovely knowledgeable people explain why I am and have been taking BOTH meds and not just Carb ? I can see that it is clear that on the two occasions I have just taken Carb for a couple of months that I have then gone markedly HYPO, but I am sure I have read posts where patients taking only Carb have also experienced HYPO but thyroxine hasn't been added to their Carb, their dose of Carb has been altered up or down or they have done this themselves ?
It's probably very clear that this disease has/is messing with my head/brain as well as my body and my life
Thank you in advance
Christine
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cc251254
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The people who are taking carbimazole on,y are probably being treated by titration which accounts fir them taking varying amounts of carbimazole. I wasn't treated that way so I don't know what the starting dose is but whatever it is it will gradually decreased over time.
When I was on block and replace I started on 20mcg carbimazole but it wasn't enough to make any difference so it was increased to 40mcg where it stayed until my B&R was stopped
If you are being titrated and you become hypo then I imagine your carbimazole would be reduced until you are no longer hypo, equally if you are on B&R and are not in the right place your levothyroxine will be adjusted upwards (in my case) or I imagine if you are becoming hyper again, your endo would reduce your Levo but your carbimazole will remain the same (or mine did)
So yes, people can be and are often taking different amounts of carbimazole but I think (and I'm not medically qualified) that depends on how they are being treated and the stage they are at in their or treatment. Every patient is different and - I may be wrong - but people react differently so I don't think treating graves is an exact science. It does show the need for regular blood tests though.
When I stopped my B&R after being treated for a year - 4 months on carbimazole on,y then 8 months on carbimazole and ever increasing amounts if Levo. By the time I stopped completely I was taking 40mcg carbimazole and 100 mcg Levo.
Hi, thank you for your response, much appreciated as always. It's all driving me absolutely nuts. The more I read, the more I see how serious it is and yet the more I read the less I seem to be able to take in ! I keep looking at the few print offs of blood results I have (because I only started getting copies of blood results a little while back when I read on here and Patient UK that you always should) and I STILL cannot make out what my is it "optimum" levels should really be for me, although I DO understand that it's MY symptoms that should be listened to and not necessarily the blood results that should be used by the so called medical experts !
Can I ask when you were taking 40 gms Carb, did you split the dose i.e. one x 20 gms in the morning and one x 20 gms afternoon/evening ? I take the 40 Carb a couple of hours of my 100 micro gs Levo which I take at about 7.30am (on an empty stomach, with water and don't have my cup of tea or anything else until one hour after).
I know, it's really difficult. You're so right about it being 'your' symptoms that they should be taking note of and I have to say I really felt that taking my notebook / diary with all my details along with me and referring to it and making notes while they spoke to me was probably a good idea it showed I was going to take an active part in my treatment and wasn't going to be fobbed off. Ridiculous that y should have to.
The diary came in very useful once I started on the Levo part of the block and replace. It tied in with the blood test results and I was able to see how I actually felt at different points in my treatment.
The first time I needed an increase in my Levo - pounding heart and other hyper symptoms were back and I was sure I was becoming hyper again but some wise person on here said I was probably needing a increase in Levo and she was correct but my GP obviously didn't want to interfere with the consultant so I was offered amitryptiline - it was explained that it used to be used as a tranquilliser but it was now used for other reasons and that on the amount I would be taking I was very unlikely to become addicted. I took just enough to stop the palms then I had phased it out by the time I went to the endo who rolled her eyes when I explained what had happened and then she increased my Levo.
Next time because I had my diary I went to the doctor armed wth all my facts and said I KNEW I needed an increase and that I had felt good before and I knew when I got an increase I would feel good again and I got the increase. I'm sure it was having my notes that helped.
My TSH had increased quite a bit since I stopped the B&R - when I stopped I was TSH - 0.5, FT4 - 17.4 when I finally had my signing off visit my TSH. 1.5 (0.35-5.5) FT4 15.4. (10.00-19.8) The comment beside that in my diary says " Almost exactly the same as in June 2013!"
That was when I was feeling really called to the bone and I was given a small increase however I didn't really feel cold and hypo like I did back then.
I think (well I know) I felt better when I stopped the B&R but because I'm 'within the range' *sigh* nothing will be done and I'm ok really. Having been hyper and I'll for so long I found that in the beginning it took me a while t get used to the 'new normal' me.
I've had loads of aches and pains and other symptoms for ages and thought I was becoming hypo but I've just been diagnosed as having inflammatory arthritis - I'm almost finished a course of steroids and have started in DMARDS - they haven't kicked in yet though so what I felt was hypo could have been caused by the inflammation.
I took the full 40mcg at once - with breakfast and my blood pressure pills - about an hour and a half after I took my Levo. I took that when the alarm went off at 06.00
They asked whether I took the carb all at once and seemed pleased when I said I did. Unfirtunately i didn't ask why they were pleased though.
I also tried taking my Levo at bedtime - a lot of people do and prefer it - but it didn't work for me which was a shame ad it would have been more convenient - but I didn't feel as well as I did taking it in the morning.
I actually said to one of the endos I saw (the downside of teaching hospital - I never saw the same person twice, although I decided to think that was because I was progressing well) anyway, I said to her that I couldn't understand why they bothered to have the patients in when they made their decisions based in the blood tests, as I said it doesn't really seem t matter what we say. I said it very nicely and she just sort of looked at me without saying anything. It was funny really.
Hope you get sorted out soon. It's all such a pain really - especially as the NHS doesn't really do fine tuning - well not sure that the average private endo does either for that matter. 😕
Hi, many thanks for your response, it really is appreciated that you take time out to do this.
Yes, it's getting quite clear that different Endos have different ways of "attempting" to treat this disease.
Can I ask why you say that you think mine is a pretty severe case? I have now started to realise just how serious it is, that's for sure, because at diagnosis I just thought "oh ok, another condition to add to my list but I just have to take these tablets for a few months and hey presto I'll be back to normal" - NO-ONE (GP or Endo) explained that it was a serious life long condition and I had never even heard of Hyperthyroidism (I had heard of or seen the term "Graves Disease" but didn't know what it was.
You are very very knowledgeable about this subject and I salute you for it and the advice you give so many on here. I just can't seem to get my brain into gear and take in the vast amount of information. I have just tried to register on the Elaine Moore Graves Disease website for more information/education and join the forum and I CANNOT for the life of me get registered...........each time I have to confirm my password I get a message that my confirmation password is different to the initial one that I am entering.........I swear to god that I AM typing in the same password !!! or is it really my brain that is not functioning ??
I am quite new to these forums but not new to thyroid issues. I have just read all of your posts and was surprised to find that people had taken carbimazole and levothyroxine at the same time, I didn't know that was an option. All endos must go with what they find works best in their patients.
About 9 years ago I was extremely overactive, I had many of the symptoms you describe. My endo treated me with only carbimazole trying to gradually reduce the dose, it was impossible. I saw them regularly for 3 years, I must say they were brilliant and extremely understanding. I just felt so ill, looking back I had symptoms for years but went to the dr when my heart was beating so fast I couldn't cope. I couldn't climb the stairs and was suddenly so breathless I was scared to leave the house. I did have loads of energy a couple of years before, once I became extremely overactive all I did was sleep but it was really restless with crazy nightmares.
I could be here forever listing symptoms as I am sure most people here could.
In the end I did have RAI, I am so pleased I did. Obviously it wasn't much fun having it, my children were small and I had to stay away from them for 2 weeks.
I don't regret it for a second. I went to very underactive afterwards but I can honestly say although there is some very horrid symptoms being under, when I was so overactive I felt like I was going to die everyday, I couldn't cope with so many things.
I often don't feel quite right even now but I try to get a balance that makes me feel okay, I take different doses of levothyroxine every other day and take much more or less if I feel I need it.
There is so much to learn and my answer probably isn't much help to you. I found your post interesting as I am still learning lots.
I can't believe your endo didn't explain how serious a condition it is, at my first appointment I was told of all the problems I would face. They were surprised I hadn't gone into thyroid storm and kept warning me it was a real possibility.
Hi, many thanks for your response and I'm glad to hear that RAI has worked for you and that you have no regrets. To be honest I don't know how you coped with having "children" and having such bad hyperthyroidism with all those symptoms. Luckily for me, my daughters are in their 30's now and no longer at home so if I feel the need to nap through the day, I can. I do look after my 20 month old grandson for one full day per week from 7am until 6pm and I HAVE to preserve/conserve my energy for that one day a week and it is still a daunting day for me - I get panicky and anxious the night before and the morning of his arrival and get breathless just lifting him in and out of his highchair, just as I sometimes do lifting the ironing board on some days - on good days the ironing board feels as it should, quite light and not like a lead weight ! All depends on what kind of day I am having. I actually have Graves Disease with anti-bodies/hyperthyroidism and I have read from many people on different forums that unless the anti-bodies are reduced and under control that there is NO WAY anyone should have RAI or surgery, because the anti-bodies don't have the thyroid to attack then they will attack some other organ ! So, as you can imagine, the more I read the more confused I become - as far as I am concerned my GP nor the Endo are monitoring the anti-bodies each time I have a blood test ! They have only been testing the TSH and FT4. FT3 is, I have read, a very important test and yet this has only been tested by my Endo on 2 or 3 occasions. I did ask at my local Medical Centre for my FT3 to be tested and was told that because of the "financial implications on the NHS" the FT3 isn't done and that we are lucky to have the FT4 done !! Many people on here and the other forum I am a member of have private blood tests done and also see private Endos but not everyone can afford this and therefore have to rely on the NHS.
Like you, I was an extremely happy go lucky lady with a fabulous life and social life, however, this disease has/is turning me into the opposite, it doesn't help at all that I have lost so much weight and only managed to gain a small amount back - losing weight at my age doesn't do me any favours as I had no weight to loose.
Anyway, I will be seeing the Endo on 30th December and once again I will go armed with my notebook full of details I have noted from this and the other forum and just have to see what the outcome is then.
To be honest I don't know how I coped either, I know exactly that feeling you describe of getting panicky and anxious before you have your Grandson. My children were 2 and 4 at the time and sometimes I was almost scared of being alone with them, I really thought I would just drop dead and they would be alone in the house! I didn't manage everything, I had to leave my job. Looking back with all the symptoms I had I can't believe it took me so long to realise how ill I was. I was working night shifts and I never slept, I would work all night be up all day then go back to work, that should have been my first clue before all of the really horrid symptoms arrived. Sometimes my patience was really short too which must have been horrible for my children and husband.
I also had/have Graves but I didn't even look up anything about RAI before I had it which could be a mistake, I just went with what the endo was telling me and assumed he knew best which I am sure lots of people think is naive but I just felt so ill I would have done anything to get better. The endocrinologist I saw is very well respected and I just trusted him. Thank goodness it worked out okay! I say okay. I have never felt like my old self but I am one of those annoying people who tries to look on the bright side, I now also have severe endometriosis and developing loads of food allergies but if I dwelt on everything I wouldn't cope. I just remember how much worse I felt when it all started and am grateful to not feel that way anymore.
Also my 11 year old son was born 17 weeks early and now has special needs, the endo said my thyroid was the most likely cause of his premature birth so I just wanted to not be overactive anymore.
If I was you and I had started looking up all of the information and keeping a note of results or lack of results in the case FT3 I would do exactly as you are. Turn up to the appointment with as much information as you can with as many questions as you can. Sometimes you have to just take charge yourself which is no fun when you feel so unwell.
From memory I think my endo tested me for everything at every appointment as he was struggling to get good results with me. I also asked to be tested for all sorts of other things and it was never a problem, I found it was more the GP who was unwilling to do the T3.
Make sure you spell out every single thing that is bothering you when you see endo, every time I went I told them about every symptom, including bad dreams. I was in there for ages. I did find them very patient with me.
I joined healthunlocked to find out more about my endometriosis but saw the thyroid threads too. It's amazing I have had thyroid issues for so long and know so little, some people on here are so knowledgeable, it's quite complicated.
I hope your next appointment goes well and you see some good results soon. I really feel for you, it's awful when you are going through it and it's hard to explain to others. I had to cancel so many things when I was overactive I am sure people thought I just couldn't be bothered.
I would say good good luck but it's not really about that so just look after yourself as well as you can.
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