Just wanted some advice from other members who may know.
Been ill with Graves since 2016 - on AT drugs - for third episode Feb 2023 was on just Carbimazole 40mg for 4 months but then put on block/replace (40mg Carbim/100mcg Levo) for currently 17 months and health has only gone downhill in this time - in fact so much so, have lately been considering whether to have the dreaded RAI treatment 😱 which I have always been opposed to because of what I've read about it - especially on here and on Elaine Moore website.
Currently racing pounding heart/breathlessness/sweating - all getting worse again - particularly after eating and makes me feel very ill. Now can only eat very small amounts due to this - lost over 10 lbs weight because of this in last few weeks and not overweight to start with. Actually did read another post on here a bit ago about someone having these symptoms after eating but can't seem to find it now.
Have bloods done at endocrinology now every 3 months and said my latest ones (31st October) were okay but nowI have them I see my FT3 was right up at top end of range and wondered if this could still cause the symptoms?
My results were:
October - FT3 5.8 pmol/L (3.8 - 6) (In Aug this was 5.3 and April was 4.8 so been steadily increasing)
October - FT4 13 pmol/L (7.8 - 21) (In Aug this was 12 and April was 12 so fairly steady)
October - TSH 0.10 mU/L (0.35 - 4.7) (In Aug was 0.22 and April was 0.24 so steadily decreasing)
GP doesn't seem to have any clue and endo nurse who gives my results just says "not due to thyroid - bloods are okay" but since I have seen the latest ones with FT3 increasing right to top of range and my heart symptoms have got worse, I wondered if this could be the cause as I don't know what to do and getting more ill all the time. Wondered whether safe to just stop the levo for a little bit and see if anything improves (as I asked but I can't get to see endo again at moment as too busy - even though not seen him for 16 months)?
Would be grateful for any advice 🙂
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LonelyPlace
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Block and Replace doesn’t suit everyone, certainly did me no good at all so I requested RAI and very happy I did, wish I had done it years earlier ! I had no side effects from it, went hypo within 4 weeks and have been pretty stable since taking Levo and that’s about 20 years now. Don’t believe all you read about RAI, it works for the majority of people and has done for many many years, you will generally only get negative comments on here as those happy with the result have no need for a forum, they are off living their lives, as am I.
I'm glad it has worked well for you. It's just what you read like just this one article on Elaine Moore - I don't know whether you read it - regarding pulmonary function/pulmonary fibrosis after RAI: elaine-moore.com/blog/tabid...
I read some of your profile and some time ago now, you were looking into private T3 back then. Can I just ask, providing you don't mind that is - as was just interested as to what happened - did your Levo issues just resolve themselves as this was one thing I was concerned about with RAI as cannot work now due to health and so would be very difficult to fund my own private treatment/prescriptions etc. if Levo doesn't work well. My results suggest I do convert well at present - maybe bit too high T3 (although still unwell) but this might not be the case if had RAI and lose thyroid altogether.
Was hanging on and waiting as read somewhere a while ago that a possible new treatment was being researched and may become available but heard nothing since and probably won't anytime soon.
I didn’t really have any problems with Levo but my late husband took T3 as well as Levo and at the time I just wondered if that was the best option, however a trial was refused, one rule for men another for women as we all know !!
I had Graves from age 12 and had partial op at 18 as my heart function was becoming a problem, I was ok after the op for several years but then relapsed and kept on relapsing until Carb just wasn’t working hence the RAI, now the thing for me is that all those years of Graves and relapsing has affected my heart as I now have multiple cardiac problems. Shame we can’t wind the clock back and do things differently!
This is strange and bit similar as I just received a text of all things from GP saying that they found I have "incomplete bundle branch block" - apparently a slowing of the electrical conduction of heart from an ECG I had the other day. Never had anything highlighted before on ECGs or two 24 hour holter monitors. Haven't told me much else about it except no treatment at this stage?? Whatever that means? Bit worrying and to tell me this just via a text is a quite shocking. Not sure what is going on now and whether this is causing my racing heart symptoms or my borderline T3?
I can see what you say about how Graves' affects the heart - I've gone through 3 relapses since 2016 and the main worrying symptom I have is with my heart with many episodes of racing/pounding heart with chest pain/breathlessness and much sweating - with the worst often ending up in A&E.
Standard ECGs and 24 hour monitors can miss an awful lot ! they just aren’t long enough to capture problems, it took a 7 day monitor to get my arrhythmia.
That’s good you don’t need treatment yet but don’t let them fob you off, I would ask for a referral to a cardiologist for further testing and advice of treatment, you may need a pacemaker at some stage which is what I had to have and they do make life a lot easier !
This is unusual because 40mg Carbimazole is a blocking level dose & 100mcg levo is low for a replacement dose.
I suspect some natural production is still involved here. With hyper symptoms I’d start by decreasing levo. Usually adjustments are by 25mcg daily. Speak to doctor.
Doctors often bring FT4 & FT3 levels too low in order to make TSH rise.
I’m on a lower dose carbimazole (titration) for hyper nodule & was told exactly the same when my FT3 was borderline high. GP refused to increase carbimazole because FT4 & FT3 were in range & any symptoms were unrelated. They were wrong.
Endocrinologist was the opposite and overdid the antithyroid.
That's what I thought - FT3 is quite high but FT4 isn't very high and TSH dropping lower.
I think you could be right about natural thyroxine production as endo said I would be unlikely to achieve remission for long, TRAb is generally very high and Graves seems to only get more severe with higher doses of Carbim as I was on Carbim only until June last year when because they did not monitor me properly I went from severely hyper to severe hypo rollercoaster and for ease I think, endo just stuck me on block/replace but not well. So unfortunately may have to consider definitive treatment - probably RAI as I don't think I could undergo thyroidectomy.
The blood tests are only a guide. Your fT3 is high and could be casuing your problems. I've not had Graves' so have no experience. I would skip you levothyroxine for a few days and then try skipping one in three or one in four doses. You can then see how you feel and make the next decision. If you get your doctor to prescribe a lower dose you will have all the bother of getting it restored, I think it's better to sort your dose out and then tell them as this is a safe option.
I thought FT3 may be too high as well, although I don't have that much experience and haven't been on B&R before until last year (only on Carbim monotherapy before).
I agree it may be best to test it before all the palaver of trying to get dosage altered just in case. I mean I woudn't think it will do much harm skipping a dose of Levo once in every few days and see if feel better - and will only reduce my high FT3 which I feel needs reducing anyway - although my FT4 is not that high and this probably doesn't need to be much lower? (However I wouldn't ever skip Carbim even if I felt I ever needed it as I know how dangerous that can be - my hypers usually mean an ambulance, if I am able to get one, and A&E due to the heart issues). It is probably best as you advised as can't really just take a smaller dose, like 75mcg, as my levo tablet is just one small 100mcg tablet and so difficult to cut and not with any accuracy.
You now do look a little over medicated - can you reduce your dose of T4 a little ?
T4 is a storage hormone - if you have a pill cutter or a sharp knife - you should be ok to at least chop the 100 mcg T4 tablet into two - otherwise you could drop a 1 x 100 mcg dose once a week as a start - and possibly adjust down further as blood tests dictate.
It is a horrible time for you - you can read around so much you become dizzy with all the information - I believe my reaction to the RAI extreme - quite why - I do not know - and no mainstream medical will comment - but the information is now out there - and I feel somewhat vindicated for my stance on RAI thyroid ablation :
The QOL post RAI survey is somewhat limited as we do not know what medications these patients were prescribed and / or if NHS guidelines were followed - which may of course be the problem - as I believe there should be different guidelines in place once there has been a medical intervention - thyroidectomy / RAI - and be diagnosis dependant.
Your metabolism is being controlled by the AT drug and T4 thyroid hormone replacement - and currently you are running a little too fast :
Are you aware of symptoms and feel comfortable adjusting your tablets as suggested ?
Do you also run your core strength vitamins and minerals - ferritin, folate, B12 and vitamin D as if these are not maintained at optimal levels you do risk your health being compromised further than necessary -
as this often happens when metabolism is running too fast or too slow as the body struggles to extract key nutrients through food - no matter how well and clean you may eat ?
There is a lot to think about - I believe a thyroidectomy a cleaner, safer way forward if you can't see yourself staying on the current regime -
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 being the active hormone and around 4 times more powerful than T4.
Some people can get by on T4 only medication - Levothyroxine:
Others find that at some point in time T4 seems to not be as effective as it once was and that by adding in a little T3 - probably at a similar dose to that their thyroid once supported them with - they feel better and their T3/ T4 thyroid hormone balance is restored.
Some can't tolerate T4 at all and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3 :
Whilst others find their health restored taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids, dried and ground down into a powder and then made up into tablets - referred to as grains - with each grain containing trace elements of T1, T2 and calcitonin + a declared measure of T3 and T4 in each grain.
Currently T4 only is the first line treatment post RAI treatment - and you need to be referred back to an NHS endocrinologist if you find T4 monotherapy does not fully restore your health and well being -
where you will be assessed as to your need to be prescribe you T3 - which has become something of a post code lottery throughout the country with ICB / CCG rules and financial constraints being implemented rather patient need.
Obviously if you can afford to go privately there is a very different landscape - and there are also forum members, who choose or have been forced into self medicating - myself included.
I am getting a bit down at the moment after more bad news. Just received a text from GP saying that they found "incomplete bundle branch block" - apparently a slowing of the electrical conduction of heart on ECG I had the other day. Never shown anything before on ECGs or two 24 hour holter monitors. Haven't told me much else about it except no treatment at this stage. Whatever this means?? By text only is quite shocking. Not sure what is going on now and whether this is causing my racing heart symptoms or my borderline T3 has?
Am now thinking that similar to Bantam12s latest reply to me above, that Graves effect on my heart is causing me serious complications as it has the worst effect on that. As I said I was trying to stay as far away as possible from RAI due to all the research on that - as well as even my endo admitting to me, when I quizzed him, that of his patients - those having RAI had the worst QoL outcomes (rather than AT medication or surgery). But now I feel I don't really have any choice as surgery is not a good option for me with other conditions I have meaning more risks, although RAI is far from risk free and I'll really struggle to pay privately for anything - medication etc. with having to give up work early due to health 5 years ago at 50, all my plans for decent pension and working longer went up in smoke due to it.
This disease is the worst struggle of my life - I never imagined before that an autoimmune thyroid condition could cause this much physical illness/complications/problems as well as all the problems this causes with mental health - wouldn't wish it on anybody!
I had block and replace which was a waste of time! So I opted for RAI and have been fine since. Mine was in 2012 and I had the medium dose - the only downside was being Billy-no-Mates for 2 weeks so sent my husband off the Norfolk with the dog in the motorhome
Thanks for your reply. Glad you've been fine with RAI. I will have to consider it now but not very happy as you read so many bad things with seemingly many unwell patients - even my consultant admitted (eventually) to me that his RAI patients didn't do as well in terms of QoL afterwards but they still push it as first line treatment to patients. However I'm not doing well on thyroid meds and don't think I could go through surgery as have other complications/conditions which likely will be more risky.
Do you mind me asking why B&R wasn't good for you - what symptoms you had?
Mine are mainly heart related tachycardia (very fast racing heartbeat sometimes for no reason but particularly couple hours or so after eating) with associated breathlessness/sweating. This even happens when I'm asleep but then wakes me.
So not good and now been told have a heart electrical conductivity problem when had loads of ECGs in past (some last year) and 2 x 24 hour heart monitors within last couple of years which said everything was okay then.
I don't know whether it's connected but I've also noticed when I walk now my calf muscles are always pulling - for no apparent reason and never used to happen before but now left and right frequently do and then can hardly walk for week or so - just hobble/limp. Very strange. Not sure if its due to any of the medication though but is since I've been on it. 🙂
I had severe weight loss, palpitations, weakness, confusion etc so much so that my husband thought I was dementing. I was ravenous all the time and could quite easily eat 2 bars of chocolate on the way home! My Graves antibodies were > 1300 when the normal is 0-60! The B&R never improved my T3 and T4 results.I am fine now and still actively participate in excavations etc at 73!
I'm not well on B&R now either, after 17 months on it - was not too bad at first. I'm up to stone in weight loss now as struggling to eat, as well as tiredness/weakness and horrible tachycardia with sweating (especially after eating - heart goes out of control within hour or two), my kidneys not doing well when they were fine before I was on this and now have the heart issue as well. I think it must be either the medication or the Graves itself - not sure??
Thinking I may well have to opt for the RAI route - it's my last chance at being well although hesitant as know it's not a reversible procedure if it doesn't work out for me and I can't afford private T3 meds as I can't work anymore. But I think surely I won't be worse than I am now?
Some people, such as yourself, have done well since and that gives me some hope. I mean I couldn't take part in excavations now and I'm just 55 - I can't work now and can't even go on a break/holiday anywhere (for 7 years now) and only go out for my food shopping for couple of hours on days that feel well enough. Fed up of having to rest all the time. Don't get much support though from NHS - GP or endocrinology - it's very poor and so doesn't give me any confidence that I would be well supported with any treatment or after - I don't trust them now with my experience over many years - it's a bad state of affairs. I mean just now telling me I have a heart condition with a text with no real information is astounding to me. Our A&E was rated the worst in the country not long ago.
I love chocolate by the way, wish I could eat 2 bars but now even if I ate 3 little squares my heart would be totally out of control within an hour or so, so sugar is really out for me now - which is hard as have a sweet tooth!
I'm glad you are doing well post RAI - I wish I could get there as well but think I have a long way to go. I also have swallowing problems as well and am told that my NHS trust only does RAI via capsule you have to swallow which, unless very small, would be a problem. I think some other trusts can do it as a liquid. I'm not sure why mine doesn't unless they consider it more risky/side effects if swallowed as liquid rather than contained in a capsule?
Anyway I'd better stop rambling now. I wish you all the best with your continued good health. 🙂
My GP advised against surgery as he said he'd got patients who were having problems (several years later) with their calcium balance due to damage to the parathyroid during surgery. It ewas my consultant who suggested the RAI.
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