Graves - blood test

[nooneimportant]

I bit the bullet and have messaged the GP this morning and requested a blood test ... I'll wait and see if they'll allow it.

I realised whilst crying AGAIN in the shower this morning that something was very wrong, as I was struggling to get up again this morning, unable to go for my usual walk and crying several times a day (even whilst I was away:() along with other stuff there has to be something a miss somewhere.

I did however do a sensible check when my mind came back to me briefly and looked closely at NICE guidance specifically related to Graves Disease - there are different recommendations for other types of thyroid conditions - nice.org.uk/guidance/ng145/... :

There were fewer relapses to hyperthyroidism with block and replace treatment compared with titration. The committee noted that block and replace treatment could theoretically provide greater stability and require fewer medical appointments than titration regimens. Therefore they recommended a choice of either regimen for adults with Graves' disease....Short-term combined testing with TSH, FT4 and FT3 is needed to inform decisions about the need for additional courses of treatment or dose changes with antithyroid drugs.

[Fruitandnutcase]

I was treated with block and replace and I found it very good. I took a high dose of carbimazole 40 mcg - I started on 20mcg but after 4 weeks it hadn’t really changed anything and I got a letter from my endo ( I hadn’t met her but my GP surgery and my hospital file share) telling me to get more from my GP and increase the dose. I stayed on 40 mcg for another two months until I finally saw my endo. By the time my first endo appointment came round I was pretty hypo but apart from that the treatment went well.i had regular blood tests, the carbimazole level stayed the same and my levothyroxine was increased after each hospital visit. I always feel it is very controlled, there didn’t seem to be any ‘guesswork’ I was prescribed a certain amount, a month later I had bloods taken and a week after that I saw a consultant and my levo was increased until my bloods were where they wanted them to be at which point everything stopped the day after the final visit.

My treatment took exactly a year but if it hadn’t worked I would have wanted to stay on B&R for as long as it took - I was always being told that if it didn’t work etc then I could have rai instead.

I can remember feeling really weepy at the beginning before I started on the levo - or I’d say it was more that I was extremely volatile bordering hysterical if things didn’t go well.

Once I added in levo things got a lot better although I always knew when I was needing an increase in levo - I used to get symptoms similar to being hyper but someone on here said I was probably needing an increase of my levo and not surprisingly they were correct.

Definitely worth asking about B&R - not sure every hospital treats Graves that way - according to the consultant who gave me a run down on how to trespat hyperthyroidism on my first visit , he finished by saying ‘we use the quick way which is block and replace, your treatment will take a year’. I didn’t think it that was particularly fast. I’ve also just realised that was why I started taking high strength slow release vitamin C and I’m sure there was a touch of zinc added with that.

Good luck with it Ali, it’s a nasty condition to have but keep going. I kept a daily diary with bullet points on how I was feeling with each increase etc. just a quick note but it was very helpful.

Sorry to go on, hope you can find something useful in that essay!

[nooneimportant in reply to Fruitandnutcase]

Don’t apologise this information is useful however B&R is considerably more expensive and for that reason I doubt it’d be considered here although does seem a better line of treatment. I think I’m also too far along to ask about swapping now but if I ever see him again I might if things haven’t changed for the better - he has mentioned in every letter that it’s just for 18 months at which point I think he’s deluded himself to think he can force me to have RAI. Which I won’t consider for a second so hoping that he’s relying on that as an option.

I think my graves has flared up hence my symptoms but until bloods are tested I just don’t know. All I know is I feel horrific and struggling now with normal daily activities 😔

Of course I will update whenever I can x

Thank you xxx

[Billycasper]

hi, I was on B&R for 18 months. I gradually increased Levo as I needed it. My Endo suggested I should do this myself as I started to feel symptoms. There was one instance where I increased from 75 to 100 which took me over and palpitations came back (I had palpitations when I was too low and too high). Towards the end of the 18 months I struggled getting the right combination and so I decided to stop completely. It took me a while for my thyroid levels to improve and TSH to drop. I’m now at 2.35tsh (stopped meds in Nov ‘22). On the whole I feel much better but that might also be because I started HRT and testosterone part way through my treatment (I’m 62 now). I asked about taking Levothyroxine after stopping carbimazole but my endo refused (TSH was at 4.60) so I know they’ll refuse any levo at a level of 2.35. I just try and make sure everything else is running at good levels (Vit d, ferritin, b12, b vits, folate). I’m glad I was treated with B&R because the majority of the time I felt well and I do think it gave my thyroid a good rest. Good luck with your treatment.

[nooneimportant in reply to Billycasper]

Thank you - B&R has never been offered to me and I think it's unlikely now but I'm glad you had good treatment and it worked for you. I am really struggling on the titration regime personally.

[asiatic]

B&R worked for me too. AITD is a unique journey for us all. Some need a higher dose of Carbimazole whereas I was aware early on that I had a tendency towards hypo and wanted to be on the lowest effective dose which was found to be 10mg. which I took for about 7 years adjusting the Levothyroxine slightly to keep fT3 half way in range where I felt well. I would argue that B&R is expensive or it is too late for you to change. Where do you live that you feel it would not be considered an option ?

[nooneimportant in reply to asiatic]

Thank you - I'm in Lincolnshire and B&R has never been mentioned or given as an option thus far - I haven't gelled well with the titration method nor my consultant tbh

[asiatic in reply to nooneimportant]

When I found myself in this position ( my endo was a diabetes specialist whom I suspected knew little about thyroid ) I asked my GP for a second opinion and luckily the second endo was someone I could work with. He said my treatment had fallen far short of what I could reasonably expect. You might want to be more proactive and put together a concise report of your treatment up to now stating your expectations and how they aren't being met. Hopefully you can start over with a new endo familiar with B&R

[nooneimportant in reply to asiatic]

He’s my second endo already 😔 last was very misogynistic I actually had to file a complaint which was ignored and then I moved out of the area and was given this one. He’s nice and I know he’s trying but again a diabetes specialist - I struggle to attend f2f appointments although I’ve only been offered one of late the rest has been telephone but I’ve never felt well during treatment at best a couple of weeks in total in the last year on a titration method and the thought of having to live like this going forward … I just won’t. 😕 I’ll wait for blood tests and see where I’m left after that.

[Fruitandnutcase in reply to nooneimportant]

If you could get a train down to Addenbrooke’s that’s where I was treated, it might be worth changing hospitals.

PS - have you thought about changing your name to ‘I’m someone very important’ because you are? I hate to think that you see yourself as no one important.

[asiatic]

Yes let us know what the blood tests say. Hopefully you can then say to him look nothing else is working and my results show.......can we not try a new approach ie. B&R. Meanwhile swot up all you can on it to present your case to him.

[nooneimportant in reply to asiatic]

Test is on 24th June so I’ll report back then - after some more naps though 😴

[pennyannie]

Hey there -

I wasn't offered Block & Replace and back in 2004 didn't know anything anyway and trusted what I was being told - and though very well on the Carbimazole I was told at my very first hospital appointment the it was too dangerous a drug to stay on long term and that RAI was a safer option.

Looking back I never saw the same endo more than twice - and back then I had regular 2 monthly face to face appointments and when I questioned this it seemed that everybody was training and ' simply on rotation ' -

so I do wonder if it is also about the skill set within the endocrinology unit ?

I think your last results suggested that you were now hypo and needing a dose reduction in the AT drug but it seems your symptoms are jumping around from hypo to hyper -

so it's worth asking about Block and Replace since as I understand things the NHS can't refuse to treat you if you decline the RAI definitive treatment.

[nooneimportant in reply to pennyannie]

Thank you - wasn’t quite hypo but bottom of the t4 reference range in April and just a smidge below reference range for TSH but I think I’ve gone back up on T4 or down on TSH or something isn’t right 😔 I shouldn’t wake up wishing I hadn’t I know that’s not right - just trying to get through a sandwich (making me feel sick) before a nap then back to work 😴

[asiatic]

My interest is in HYPO Graves which may be affecting you too. The following are references to papers I found of interest that may be useful in presenting your case to your endo for B& R

pubmed.ncbi.nlm.nih.gov/809...

pubmed.ncbi.nlm.nih.gov/247...

ncbi.nlm.nih.gov/pmc/articl....

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/790...

and Remission from Hypo Graves by Tania Smith in Thyroid Patients Canada