just thought id give a little update on my abysmal journey through thyroid land
The GP - having not acknowledged the concerns originally raised (you may remember I was suffering quite a bit with depression and various symptoms) marked my thyroid results as "no further action" to which I've received no further contact, I only know this as my results were online. The GP did however send the results to my endocrinologist (just didn't bother informing me of the results or ... well .... anything).
The endocrinologist has sent a letter to my GP to acknowledge the thyroid results and refuse the request (I sent via email) for the consideration for block and replace as he considers me now euthyroid and states I have not been able to tolerate the higher doses of carbimazole (anything above 10mg) and therefore could not be considered as a candidate. He did note in the letter to my GP that "she will not under any circumstances consider RAI".
I knew it was coming so therefore not disappointed. However, following this most recent lack of engagement from the GP I am now considering finding a new practise AGAIN. I am also considering not attending the appointment in August with the consultant as the letter states very clearly he's not interested in my health but only that of numbers produced, therefore it would be a waste of time attending.
I'll sleep on it .... the depression has eased recently but I have ballooned in size (I think in part due to water retention), I'm still sleeping much more and getting tingling in my hands, along with a few other things - but let's not concern the so called professionals with such silly matters like healthcare. 🙄🙄
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nooneimportant
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From my limited experience and from reading on here -
Block & Replace is routinely started at the beginning of the treatment regime - but not offered to everybody anyway -
so whether this is due to which set of antibodies are controlling / driving the thyroid -
or the guidelines within the hospital as to which treatment options are available and or the skill set within the endocrine department - I've no idea.
Having refused RAI - you can't be refused treatment with the AT drug - but you may find the endo passes your treatment plan to your primary care doctor - as there's little else that needs a hospital setting or an O/P appointment slot.
Have we had any readings for ferritin, folate, B12 and vitamin D as these tend to nose dive when metabolism not sitting quite right and non optimal levels of these body building blocks can unnecessarily compound your ill health further ?
thank you - last lot of results (and everything has been pretty stable in that department) showed no issues - usually well within range on everything.
I don't mind not being on block and replace - it was just something that was recommended on here so I thought I'd ask them - I just knda want this nightmare to be over as I've not been "well" on Carbimazole since I started it a year ago
I'm just so tired and bloated and my diet and lifestyle is good so I just don't know what else to do now and I have no desire to see the endo again as there's nothing he will say but look at numbers :/ hey ho looks like I am stuck here for the foreseeable
I’m so pleased your depression symptoms have eased; that’s definitely a positive step.
I’m so sorry about the lack of support from your GP and hope you find a practitioner who is more engaging. Perhaps you could ask members for recommendations in your area?
Do consider attending the endo appointment, but go armed with a written outline of your symptoms, concerns and wishes. It’s a good idea to take someone with you if you think the meeting may be a tricky one, for moral support.
Thank you There's only two in Woodhall Spa and the other one doesn't look much better - I've not had any luck with clinical professionals but GPs have been nothing short of negligent (I have the evidence unfortunately). It's definitely something to do with me as a person I just can't quite understand what it is :/
The appointment letters state we can't take anyone in with us - I think that's a left over from Covid thing though, although I don't have anyone I can take anyway to be fair. I've asked for a telephone call instead as I hate going into the hospital it be poked at and lied to, at least on the phone I don't have to look at these horrible people.
When I was treated for Graves in 2012 I was prescribed first of all 20 mg carbimazole and had more blood tests done after four weeks. There was no real shift in numbers so I got a message telling me to get more carb and take 40mg a day, I did that for another two months until I finally saw an endo in person.
The endo explained all the different ways of treating Graves - titration, block and replace, RAI and total thyroidectomy and finished off by saying ‘ At this hospital we treat the fast way with block and replace’ and that it would take a year - I didn’t think that was particularly fast but maybe it was and it took exactly a year.
So to do block and replace it would appear that you need to be able to cope with a large dose of carbimazole which it looks like you are unable to do and if you can’t do that it would look as if that rules out block and replace out for you.
I’m glad you are sleeping better and feeling less depressed though. A good night’s sleep does wonders for how you feel next day - or it does for me. Don’t cut back on fluids to try and fix the fluid retention, unfortunately our bodies don’t work that way and instead they try to hang onto what fluid they have.
Thank you - my app says I am sleeping better but I don't feel rested at all when I wake - no idea what that's about ... just tired then for the rest of the day have to nap at lunchtime and after work before heading up at night to start again :/ but they don't listen so I guess I just manage it myself bloomin' exhausting. Thank you though I am glad it all worked for you x
It’s such a shame you can’t cope with the amount of carb they seem to give you for block and replace - but if you can’t then you can’t.
It’s really tough that you don’t feel rested. Exhaustion was probably one of the worst things about Graves, it is the weirdest ever sort of exhaustion. I think you’re right, you’ll just have to try to manage it for yourself, just be kind to yourself.
Good luck if you’ve got this really hot weather - it was 30C here by lunchtime ridiculously hot.
yup - I've been on my own from the beginning, suffered terrible negligence via the GP, I could have made a claim but decided to leave it as I'd been through enough - Carbimazole made me very ill (much much worse than the Graves symptoms did) so I'm obviously quite sensitive to it. Reluctantly I persevered but honestly most days just wish the damn disease would just take me to get it over with. Whether I complain, sit politely, be nice, kick off, it doesn't matter I get terrible healthcare and always have -hence my stance on just not wanting to engage, to me, it's not worth it, I appreciate others have a different take on this, there's just no point when it comes to me.
I requested the appointment be made a telephone call - I've no interest in dragging fat self in to be talked down to, ignored and sent on my way.
I haven't suffered with the heat tbh, in fact I had a nap at lunchtime with my fluffy blanket on 😂 I can't go directly in the sun though as that sets off the Polymorphic light eruption so I avoid going out in it ... obviously having Graves disease clearly wasn't enough.
Think you are wise not to engage with it and give yourself more grief.
I started taking bisphosphonates for osteoarthritis and the side effects were so awful I persevered for four months then decided enough was enough, I couldn’t go on with the side effects so I was prepared to take my chances.
Had a bit (a lot!) of hassle from rheumatology when I gave up not to mention the assistant in the chemist was flapping around in a total panic when I asked her to take the bisohosphonates back because I was stopping them but I carried on my own sweet way. You’ve got to do what you’ve got to do to make yourself feel good. Sending good wishes in your direction.
Thank you sounds like you've been through the mill somewhat
The side effects have been and continue to be horrendous for me on Carbimazole and I have been and will continue to be ignored so I'll ignore them right back - sounds petty but I am well beyond preserving any dignity at this point :/
Dare I say it, it’s probably nothing personal where you are concerned, I suspect if you don’t tow the line and do what they tell you, doctors aren’t going to have much time for you, possibly because they don’t know what else to do with you and possibly they haven’t got time. In my case it was block and replace or RAI.
I was told at every visit after my second endo visit that if I didn’t go into remission then it was RAI for me. Gosh, they didn’t half go on about it and I told them every time it definitely wasn’t an option for me.
Hospitals just appear to have a plan of action - for me it was how they treat Graves then how they treat osteoporosis if you don’t go along with them - which I didn’t - then I suppose unless you become an emergency then you’re on your own and it suits me.☀️
Last time I towed the line though they nearly killed me and my unborn son - I was young I listened to them and trusted them - that was a mistake I’ll bare the scars for for the rest of my life.
These days I therefore always listen to me as much as possible. I’m not scared of dying but I’m not letting them do it to me.
I've always had a rebellious streak. I was never in trouble, badly behaved or rebellious for the sake of us but nor have I ever been of the mindset that rules need to be followed for the sake of it. If there's a good reason or its for the greater good then by all means.
But if its jobsworth petty autocracy then I question it. I guess I'm a quiet rebel lol. My attitude towards doctors and the NHS is that they need to justify why they are telling me to do x y or z.
Its not enough to just tell me I've got to follow orders and do as I'm told. For too long they've gotten away with playing God and patronising patients. I think I'm just getting more of a curmudgeon as I get older 😆
nooneimportant did the endo seriously say " he's not interested in my health but only that of numbers produced, therefore it would be a waste of time attending." If so, I'd be inclined to submit a complaint.
PS despite what your HealthUnlocked name is, you ARE important!
The letter from the consultant to the GP stated that he wouldn't consider me a good candidate for Block & Replace because I couldn't tolerate higher doses of Carbimazole (makes me very ill literally couldn't function hence never taking more than 10mg daily then 5mg daily) - he said he had discussed my case in MDT with colleagues and they all agree I should remain on 5mg daily. He seemed fine with me being at the bottom of the ranges, in T4 and T3 despite the fact I am suffering. The thing is those results weren't for him to review - sounds silly but he said I wouldn't need a blood test until late August, but I was suffering with horrific depression and other symptoms to which endo said contact your GP. So I did and told them the situation, they ordered a blood test to check if the thyroid might be causing the issue. I saw the results online (they didn't tell me they'd come back) marked "no further action" by the GP. I realised at that point they weren't bothered and were only looking at blood results and won't entertain anything other than the Graves disease so decided that when I returned from a short break I'd reduce my meds myself to 5mg one day 2,5mg the next (the tablets are too small to cut into quarters), hoping this would relieve some symptoms (only just started that this week so fingers crossed). I was looking for something else in my health record the other night and saw a letter had been uploaded from the endo to the GP stating his refusal of B&R, I wasn't aware he had been sent the results (the hospital isn't yet electronic but my GP is). I have an appointment in late August with the endo, I have asked for this to be a telephone appointment, as he's reviewed and dismissed my concerns following the results (and not for the first time) I see no point in seeing him, nor will I.
That made me laugh TaraJR - I actually said to one of the many different endos I saw during the year I was treated for Graves that I couldn’t see the point of turning up in person, sitting in the queue because all they actually wanted was blood test results, they didn’t need the rest of my body.
It was funny, the guy was almost speechless - well I mean it was true. I didn’t mind turning up etc but what was the point really. I’m sure they knew what their next step was for me based on the blood test results and I doubt if anything I had to say would change their plan.
I said it very nicely and I definitely wasn’t being critical of them but that was how it was really. I don’t suppose anyone had ever pointed that out to them before.
Although BR usually involves giving highish dose of Carbimazole, some people become hypo on a small dose. I have a scientific mindset and analysed my results on different doses and put it to my endo that I could possibly achieve well being on a low dose eg 5 mg Carb and 50 mcg Levo. We wouldn’t know unless we experimented and surely the lowest effective dose was the best way forward. Fortunately for me he thought my request reasonable and was prepared to monitor me. I did need a few adjustments over the next 7 years but felt well and hopefully now am in a lasting remission. With AITD one size doesn’t fit all
You don’t have to change GP Practice to request a second opinion from another GP in the practice.
They may ‘stick together’ but there’s a real possibility that ‘fresh eyes’ could be a great help.
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.
There's only two in Woodhall Spa and the other one doesn't look much better - I've not had any luck with clinical professionals but GPs have been nothing short of negligent (I have the evidence unfortunately). It's definitely something to do with me as a person I just can't quite understand what it is :/ 
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