After having been prescribed propanylol by my GP, I saw a specialist endo today for the first time.
As I don't have anything to compare it to, I'm unsure how safe/effective the course of treatment prescribed is.
20mg of Carbimazole x2 per day (40mg dose).
It seems pretty high to me (though what do I know?!), and from what I've read, some doctors recommend a softer dosage cycle (starting low and getting high). And Dr Barry Peatfied suggests Valium in the first instance.
Also, the endo didn't suggest anything by way of lifestyle or nutritional changes.
I don't want to knock the e endo as what he has said might be the best course, but as I have no benchmark, I thought I'd fish for some real life opinions, hopefully from experiences.
Thanks all!
PS I've attached my thyroid blood results
Written by
Zudukk
To view profiles and participate in discussions please or .
Your thyroid hormone levels are massively high, especially the fT3. This will put great strain on your heart and often causes anxiety by its effect on the brain.
Dr Peatfield's recommendation of valium is unconventional, I suspect he recommends it for mild cases but it is treating the symptoms and not the cause. Usually the beta blocker propranolol is used in mild cases because it steadies the heart and by reducing T4 to T3 conversion it reduces the thyroid hormone level a little.
Your endocrinologist is correct and the dose is correct. Carbimazole is a bit unusual in that it is initially prescribed at a high dose and then reduced as it takes effect, see the NICE guidance bnf.nice.org.uk/drug/carbim... .
Carbimazole is supplied in 5 mg tablets, so a 40 mg dose seems a lot. As you can see in the NICE document 60 mg is sometimes used. The tablets are 5 mg because after a month or two the dose may be reduced to 5 to 15 mg. You have very severe hyperthyroidism (fT3 29.2) so certainly need a large dose.
Your endocrinologist should also test antibodies. TPO to check for Hashimoto's thyroiditis, although this causes hypothyrodism it can present with periods of hyperthyroidism. TRAb antibodies are checked to see if you have Graves' disease. If TRAb have not been checked they should be so chase it up.
Nutritional chages will not affect your hyperthyrodism. There could be a theoretical link between diet and susceptibility to autoimmunity but the boat has sailed, you are now hyperthyroid. As regards lifestyle smoking is bad news if you have elevated TRAb as it can trigger or worsen thyroid eye disease, so if you smoke try to give it up. I'm sure healthy diet and lifestyle will help in the long run but for now the priority is to get your hormone levels down to normal. As for the future you should be assessed on your signs and symptoms along with fT3 and fT4. TSH is unreliable for several months after hyperthyroidism. You will probably need levothyroxine eventually assuming you become hypothyroid and perhaps some liothyronine but I wouldn't worry about that for now. Getting you hormone levels down quickly is essential.
I’m not sure if high hormone levels increase the risk it can’t be controlled, I think it’s the case. I’ve never been hyperthyroid so don’t have personal experience.
The treatment won’t make you hypo in the sense it can be backed off if you become under active. Patients often become hypo if the thyroid starts to fail. I would take it one step at a time, see if the carbimazole brings it under control.
There have been several studies suggesting large thyroid size, high hormone levels or TRAb levels at diagnosis (or these factors looked at as a group) may predict relapse, but so many things associated with thyroid disease, more research is needed. Smoking appears to be universally accepted as a risk factor for both Graves’ relapse and TED.
You are currently with an overactive, hyperactive thyroid and the AT drugs are blocking your own thyroid hormone production, so as as not to increase your T3 and T4 levels any further.
The AT drugs and beta blockers are there to support you through this phase of the disease and as your T3 and T4 come back down and into range these drugs maybe titrated as the specialist sees fit.
You will not automatically go " hypo ' :
Many people find remission and come off the AT drugs and see this incident as a " blip ".
Some people stay on low dose AT medication for years.
Some people are encouraged to have a thyroidectomy or RAI - both radical options which will ultimately mean that you become hypothyroid as your thyroid is surgically removed or burnt out and disabled in situ.
Usually, initially there is around a 15/18 month window with treatment with AT drugs and this is where you are and suggest you read up around this disease during this holding period and consider all the options you should be offered.
There is much to learn, but you have time on your side.
This website gives excellent support, and you might also like to dip into the Elaine Moore Graves Disease Foundation website as this gives well rounded research and opinion on alternative and more holistic options than currently offered in mainstream medical services, including all the vitamins, minerals and lifestyle options you my wish to consider.
First things first : you need your antibodies checked for Graves Disease and these are generally expressed as TSI and or TRab on blood test results and these need to be positive and over range and the medical evidence for the medication being prescribed.
Well I'm shocked that this apparently qualified endocrinologist was able to say it was graves' without too much doubt, and prescribe the Carbimazole...
I’m a former Graves patient. Thyroidectomy. Propranolol was a LIFE SAVER for me. Take it immediately, it’ll take a little bit for the carb to kick in, but you’ll feel relief within 20 mins of the propranolol. I used to take 180mg 3-4x a day.
Not everyone needs to take Propranolol and I decided against it because I didn't want to feel spaced out. This is just my personal opinion and some do need to take it.
If I didn’t take it. I would’ve ended up in cardiac arrest. It also helps inhibit conversion of T4 to T3. It was truly a life saver. It helped my hyper symptoms a lot. It is probably my favorite drug on the market. Zero side effects, great drug overall.
OK .. but some of us do not need it. My heart rate was over 100bpm but once I started taking Carbimazole it slowed down. We are all different and what works for some doesn't for others. I actually had a thyroid storm last July and thought I was going to have a cardiac arrest then. Luckily A & E did tests and my heart was ok.
No, I am not on any medication because I am in remission at the moment. I am one of the lucky ones. I do know this won't last forever and I could become hyper again. Graves' is forever and I know this. My TSH is 0.38 and my T4 is 22.7 so just over range however my T3 is well within range and I feel well. I do need another blood test but I am waiting until they get the corona under control before I have my blood drawn.
Just to add I still don't sleep more than 5 hours night and I don't think this will every change.
No I don't one of my eyes did start to bulge at one time because I was untreated and I lost 50% of my hair and a few nails dropped off because I was left for over 2 years with a suppressed TSH of 0.002 which none of my doctors spotted at my surgery.
You’re lucky you don’t have TED, it’s a terrible terrible symptom that I wouldn’t wish on anyone. I remember I used to have to tape my eyelids shut to sleep
Some of the symptoms for both hypo and hyper are very similar. Have you got your hair back now? Mine has been growing back for over year now and I had hair extensions at one time to hide my balding head.
No, I can’t come out of hypo. My TSH keeps rising on T4 increases. Increasing my T4 or switching to tirosint next week and gonna add in some T3. NDT ratio was too much T3 for me, not enough T4, I plummeted very quickly. I felt better on higher t4 with T3. I just keep needing increases for some reason. I’ve never been overmedicated on levo. At one point I was doing okay on 100 levo with 10 cytomel but was still hypo. So now I wanna go back to 112 levo and 5-10 cytomel. My mistake then was increasing T3, not T4. I can’t find my dose
A lot of people struggle to get their levels right after they have had their thyroid removed. Have you tried NDT? Sorry I see you have taken it. I took Thyroid S for 6 months to bring my levels up because sometimes Graves' sufferers can have periods of being underactive. Elaine Moore advised me to do that and it worked. I actually felt ok on Thyroid S but it is impossible to get at the moment because of the virus.
I mean, speaking to friends etc. idk anyone else who’s a poor converter (below range Ft3), they can just dose their T4 by TSH and all is fine and dandy.
My TSH means nothing because when it was 0.80 and perfect according to my GP I couldn't get out of bed because my T4 and T3 were very low. I then purchased Thyroid S from Thailand because my GP refused to help me.
No I only took it for 6 months because I asked Elaine Moore and she told me to do that. I then stopped it and I went into remission. This doesn't always work for everyone but it did for me.
Honestly, if you have a dr that listens, and some support like this site, or other friends, I think it’s okay.
Greygoose has been great. And I’ve met a lot of people online who I’ve spoken to who have had similar experiences, seeing what has worked for them etc. my dr also always encourages a higher dose, and she lets me try all different meds. I’ve tried levo, levo and cytomel, and NDT. She’s been on my case to try tiro and cytomel. So maybe that’s next. I’m
Also insanely sensitive to the meds. So I can tell what’s what. She also is very aware of my low FT3 and has no problem treating it. She just sucks because she doesn’t look into other issues like nutrition, adrenals, etc.
You are lucky to have a doctor like that because they are very rare and most just go by the TSH. Even last year after my thyroid storm my GP only tested that. I now do all my own private blood tests because my GP only tests the TSH because of NHS guidelines.
Some doofus endo overdosed me on T3, it was the worst hyper swing I’ve ever experienced. So I’m starting over and working my T4 back up and adding T3 back in.
Your T3 is a lot higher than mine every was so that is probably why you are being started on such a high dose. Your doctor will reduce this once your levels have decreased. I decided against Propranolol because you have to wean yourself off it. As for for Valium (Diazepam)? I personally would never take that because it is very addictive and when I worked for the NHS they had loads of people who had been on it for years and had difficulty stopping it. There are still people who cannot stop taking Valium and have been on it for years. I am not medically trained by the way but I did work in a hospital pharmacy for many years and I gained some knowledge about drugs.
Just to add sometimes a stressful event can trigger Graves' and mine was caused by watching my best friend of many years die a painful death. It is always best to try to keep your stress levels down and also avoid certain things. In my case I cannot drink a lot of coffee because the caffeine makes my heart race. One of the first things my Endocrinologist suggested was that I had my thyroid removed or RAI and I am so glad I didn't take his advice because here I am 10 years later still with my thyroid. At the moment I am taking nothing and I feel well. It has been a bumpy ride and you can read my story on my profile page if you are interested. A lot of people can take Carbimazole for years and as long as they have regular blood tests are ok. What I have found is some women struggle to get the right treatment afterwards if they do have their thyroid removed or RAI. Elaine Moore had RAI and that is why she started a support site to help other Graves' sufferers.
Here is a link to Elaine Moore's site it is full of useful information and I would join and ask her advice if I was you. She helped get me diagnosed when I kept going back to my doctors surgery for over 2 years and they told me I was suffering from the menopause.
Yes and I showed them my nails which were lifting off their beds and they still thought it was the menopause because I had irregular bleeding which was caused by my thyroid.
Slapd head with palm, it is sometimes utterly soul destroying, im not sure how some of these drs sleep at night. I am an engineer and have to keep up to date, if i was as useless as most drs i have come across i would have had my qualification stripped by my governing body and be out of work! Doctors and politicians are 2 professions where you can be dangerously useless and still get paid for doing no work!
That's why this endo i saw concerns me. He hasn't said a thing about alcohol, smoking or coffee.
To the other poster. I too believe propanylol may have saved my life, or at least my livelihood. Bad I not taken it, I probably would have had to give up work.
Have a look at Elaine's site it is full of information and you can ask her questions on the forum. Her site is mainly for Graves' sufferers and is better than this site because of that. I also gave up work because I could not do my job but I was 50 at the time and now I work from home for myself.
I’m surprised they didn’t mention smoking. No-one mentioned coffee or alcohol to me either, and I carried on with both, in moderation, although I guess we could all do with cutting back a bit, if not completely.
Like Lora7again, I wouldn’t have taken Valium had it been offered. When I was really hyper, at times my brain felt very sharp, and I wouldn’t have wanted to deaden this in any way. At other times I was completely exhausted, and wouldn’t have wanted to take anything that might have made me feel even more ‘dead’. I did find small, natural things that helped with the anxiety, as described in my previous post, and I do think it’s important to find ways of reducing stress, although some of the anxiety seems to be driven by the disease itself - hard to explain, but it’s quite weird looking at yourself being anxious, but knowing there is no rational reason for you to feel this way.
Have you tried just taking T3? I think greygoose takes only T3 and she feels well. I do know I might have to have my thyroid removed in the future and I wonder what will happen to me if I do because thyroid patients are neglected by the NHS. I have read so many stories about women struggling and getting no help from their doctors. I did contact my local MP about it and she wrote to Matt Hancock on my behalf and you can see the reply I got on my profile page if you scroll down my threads. People with thyroid disease are not taken seriously by their doctors and I have been offered counselling and antidepressants when infact all I needed was treatment for my thyroid.
Experimenting with my body, I do like my FT4 higher in the range. Whether or not T4 is inactive or goes to rT3, idk, but I do like it higher. I would’ve felt better on NDT, if I liked a higher T3 to T4 ratio.
Just remember it's like any thyroid problem, we all respond differently to medications and treatments and what's right for one person might not be right for you. They usually first try and treat you with anti-thyroid meds and see if you go in to remission. If you do, great! If it doesn't come under control or comes back, most of the time they will try and treat it with RAI which kills off your thyroid with radioactive iodine or you can choose to have your thyroid removed. Just know you don't have to do either of those things. And whatever you choose is up to you and the best thing is to do research and decide what's best for yourself. With RAI (and definitely thyroid removal) you will become hypo and have to take medication for the rest of your life. And sometimes it works out and people have no problems. But sometimes it's just as hard getting your thyroid under control when you're hypo.
You can also say you want to go back on anti-thyroid meds. I have been on and off anti-thyroid meds for the last 12 years. I always felt like having RAI or getting my thyroid removed was a really radical decision. It's not my thyroid's fault that it's producing too much, it's because of the antibodies. Taking it out or killing it off doesn't fix it. That's just my personal opinion though! I know several people who have had RAI and done just fine. My doctor still pushes for it but I tell her I will only do it when it's the last possible option.
I think the most important thing is to read up on it and come to your own conclusions. My doctor still tries to base my treatment on my TSH levels but I know and most people on here know that's not what how it works. Sometimes it comes down to self-testing and self-medicating. Find where you feel the best!
40mg/day is a fairly typical starting dose with that level of thyroid hormones. This does look like Graves’, but I would still push for an antibody test - it needs to be TRAb or TSI.
There are two basic approaches: TITRATION where the dose starts high and is reduced as thyroid levels come into range and BLOCK AND REPLACE where the dose starts high (perhaps even as high as 60mg/day) in order to completely block natural thyroid production, which is replaced with a prescription of synthetic thyroid hormone (Levothyroxine). In both cases, it can take up to eight weeks for you to feel much better. This is because anti thyroid medication (carbimazole) inhibits future thyroid production, but does not destroy existing stores which have to work through the system. During this period, you may find that beta blockers reduce some of the most distressing symptoms, eg breathlessness, thumping heart rate and tremor. In both cases, you are likely to remain on carbimazole for twelve to eighteen months. Medication will then be stopped, to see whether your Graves’ is in remission (which happens about 50% of the time).
If your Graves’ isn’t in remission, it will be time to consider long term options: 1) remaining on a low dose of carbimazole for the foreseeable future (if your thyroid levels have been stable and within range on, for example, 5mg carbimazole/day), 2) Radioactive Iodine (RAI) treatment or 3) thyroidectomy. There are pros and cons to each, and you would need to work out which would be the best for your health, lifestyle and circumstances. To be honest, for the next couple of months, I wouldn’t worry about these options. You will have plenty of time to research them once your thyroid levels are within range, by which time you will be feeling a lot better, and better able to take account of the pros and cons.
The main lifestyle change to make at this stage would be to stop smoking, but as you don’t, this isn’t an issue. Try to eat as well as you can, bearing in mind that your metabolism will be in overdrive at the moment and you will probably need more calories than usual even though you may be less active; you just need to keep an eye on the amount you are eating as your thyroid levels come down. Trying to optimise vitamin and mineral levels while taking a high dose of carbimazole to get your thyroid levels (and metabolism) under control would be very difficult, but some people have found a Vit C supplement helpful, and as we are coming into the winter, Vit D might also be useful - if you post about this, someone will be able to provide recommendations. The other thing to be aware of is that being hyper leads to anxiety, which will also be fuelled by a natural reaction to your diagnosis. Most Graves’ patients here agree that anxiety and stress make them feel worse, so it all becomes a vicious circle. Try to find ways of relaxing and de-stressing- a walk in the countryside, listening to music, yoga...whatever works for you (and having been there myself, I do realise that telling someone with FT3 levels like yours to relax is easier said than done!)
My contention is that, having read what I've read, I imagined titration and block & replace where the treatment starts with an aggressive dose quite, well, aggressive.
If I can withstand the symptoms on my own (with a little help from the beta blockers), I not better of starting slow and steady and capturing bloods every 3 weeks or so?
Rather than destroying the hormone entirely and likely ending up hypo?
The important thing initially is to get the disease (which is driven by the antibodies) under control, and ‘slow and steady’ might not do this. The problem with going by symptoms is we can ignore them - when I was first diagnosed, my heart rate was really fast and my doctor couldn’t believe that I wasn’t aware of this. Being hyper really isn’t good for the body.
At this stage(and with that amount of carbimazole) bloods are usually tested every 4-6 weeks.
I have personal experience with Graves’ Disease as well as with Carbimazole and Propranolol - I was diagnosed at the end of July. My endo started me off on 40mg Propranolol and 20mg Carbimazole, both taken three times daily. The Propranolol was prescribed to help with anxiety, a high pulse rate (120 bpm), tremors, palpitations, nervousness etc. I saw a reduction in those symptoms quite quickly and between that and the Carbimazole, I stopped sweating all the time and I could sleep properly for the first time in months. However, after a couple of weeks, I started experiencing some severe side effects from Propranolol: suicidal thoughts, worsened depression (which until then had gradually subsided), tingling and numbness in my hands and legs. I was also having morbid dreams and thoughts. At that point, my endo started to taper me off gradually until I came off it entirely.
In terms of Carbimazole, my endo reduced my dose from 60mg daily after the first month to 30mg daily - I was responding so quickly that she was worried about sending me hypo. After two weeks on 30mg daily, she again reduced my dose to 20mg daily. Even after all of that, the Carbimazole sent me hypo in less than two months! My endo was surprised because according to her, it normally takes 4 - 6 months on Carbimazole to see the sort of effect I had. I’m currently off Carbimazole entirely and we’ll see how things go in the next couple of weeks and whether my levels balance out naturally on their own. I also had some horrible digestive issues while on Carbimazole which are gradually subsiding now that I’m off the medication. It could certainly be that the digestive issues are from going hypo rather than from Carbimazole. From my experience and research, I’d say that Valium is unconventional while Carbimazole and Propranolol are more the usual. It also seems to be normal to start Carbimazole on the higher side and titrate down until the maintenance dose of 5mg is reached. Yet, as you can probably already tell from my story, everyone’s body is different. I’d say it’s important to watch how you feel at every step of treatment - whatever that treatment plan ends of being.
In terms of diet and lifestyle changes, these are extremely important in my experience and opinion. I find that it’s something that’s largely ignored by typical medical doctors and that’s disappointing. Personally, I’ve been following the AIP diet and lifestyle and there’s certainly some research to back up its efficacy in helping to bring autoimmune diseases under control - although it could take some time and patience. I’ve also seen others on here who have had positive results by following a gluten free diet. I’ve been educating myself through Elaine Moore’s website, The Paleo Approach by Dr Sarah Ballantyne (it’s a book on autoimmunity and she details the AIP approach in it) and through Dr Mark Hyman’s Podcast and YouTube videos (The Doctor’s Farmacy).
In terms of your doctor concluding that you have Graves’ Disease, is it possible that you have some degree of TED or bulgy eyes? I have mild TED and my doctor already told me that she suspected I had Graves’ Disease based on my presentation. That said, her suspicions were confirmed through the results of my TRab and TSI tests. Hope this helps!
This titration method I feel is very dangerous (in my theoretical and ignorant mind), especially if not testing bloods weekly... Overshoot it and you're hypo for the rest of yore life, or so I gather from experiences shared here.
Therefore, if one can bear the symptoms (helped with beta blockers) shouldn't one look to dose up rather than down (titration)?
It’s still only been a week since my last test confirmed that I’m now hypo and my doctor’s advised to wait 3 weeks (the time it takes for Carbimazole to wear off roughly speaking) and then test again. Yet, everything has happened very fast - all the changes in my hormones and medication have happened in the space of two months and that’s with me getting tested every month since I got diagnosed at the end of July. I’ll let you know how things go when I test again in about 2 weeks time.
You certainly wouldn’t be hypo for life because once you withdraw the Carbimazole or find the dose that’s right for you, the body adjusts itself. I think that’s why doctor’s aren’t worried about starting Carbimazole higher and dosing down. Also, because hyperthyroidism can place a strain on the heart and bones, it’s my understanding that doctor’s may start Carbimazole higher as a matter of urgency. In my case, my pulse rate was dangerously high and my hormone levels and antibodies were very off. For someone who didn’t have such severe Graves’ Disease symptoms and whose thyroid hormones, antibodies etc were less abnormal, I think their doctor could presumably start lower and titrate up.
If you have Graves’ Disease, the risk of permanent hypothyroidism comes into the picture if you opt for a thyroidectomy or RAI. That’s why personally, I don’t think anyone should be in a rush to opt for such permanent interventions.
The benefit of titration is that you take less carbimazole over time. You also get a much better idea of whether your Graves’ is responding to treatment than you would with block and replace.
Testing initially (given the amount of carbimazole you are taking) is typically every 4-6 weeks, maybe 8 weeks at the outside. The endo doesn’t just look at each individual test, they look at the graph over time. For the first six to eight weeks, your body will be using up excess stores of hormone in your body. It’s unlikely you will end up with your thyroid levels dipping below the reference range during this period - anecdotally, from my personal experience and from what other members of this site have said, dipping below the range seems to be more likely when the dose has been reduced to 20 or 15 mg/day. By this point, the excess stores of thyroid hormone will have been used up, but the exact trajectory of thyroid levels/the Graves’ isn’t easy to predict. If you do overshoot, it may not be very comfortable, but you won’t be truly hypo, and the problem is easily resolved by reducing the dose of carbimazole (but do this following a blood test, not by guesswork).
The reason most people with Graves’ end up being hypo is that their thyroids are ablated/removed by RAI or surgery. At the moment, the biggest risk to your health is that your metabolism is working overtime, putting a big strain on your heart.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Graves - regaining fitness and long term carbimazole 
Is carbimazole only prescribed for Graves?
Graves Carbimazole Titration FT's
Carbimazole 
Carbimazole
