Hi all,
Following is my thyroid bloodwork over the course of 2 months with 3 different tests, without Carbimazole.
One specialist is advising titration while another is advocating block & replace.
While I'm sure there isn't a silver bullet, do any of you have experiences or expertise that you could share?
Thanks,
Z
Ideally a Graves patient given Carbimazole will quickly see their high thyroid levels reduce and the dose will be titrated down to a low level which they will stay on for about 18 months by this time their TRAb will have reduced enough for them to go into remission. For many it's not this simple. I quickly became hypo which caused TED. My TRAb was still high at 15 and I was unlikely to go into remission. Block and Replace was therefore a good option to keep my levels from fluctuating. I have been on it for about 4 years. Currently 5mg Carbimazole and 50mcg Levothyroxine which I will happily stay on longterm although still hoping I will eventually achieve remission. I don't see your test levels or dose of Carbimazole to comment further
Fruitandnutcase was prescribed Block and Replace. She is now in remission and is no longer on thyroid meds of any kind as far as I know.
Hey there Zudukk
I don't think my answer is of any help to you as I was told at my very first hospital appointment that I was to have RAI the following year - and my only symptoms were exhaustion, dry gritty eyes and insomnia.
I think my age at 56 decided my treatment as I wasn't given any options, was totally compliant, and well on the AT medication.
All you can do is research for yourself - maybe your initial blood test and antibody levels need to be considered - I don't know why some endocrinologists offer different options - could be all down their knowledge and experience in this specialist field.
From memory I don't think I saw the same endo more than twice, as when I asked this question was told they generally rotate throughout various hospital departments, so looking back, not an ideal situation, for either party as there was no follow through to learn from.
I don't know if I've mentioned the Elaine Moore Graves Disease Foundation website to you before. Elaine has Graves and runs an open forum much like this amazing platform and she also answers people on a one to one basis if she is around.
Block and Replace didn't work for me, it was impossible to keep my levels stable but that doesn't mean it won't work for you, can only try it and see.
My assumption about the block & replace is that I can move to titration if it doesn't work, whereas, with titration, I feel like it's irreversible if I go into hypo.
Is the above assumption correct?
From my own experience and what I read about others, both regimen often require careful monitoring and frequent changes. You have to become aware of what symptoms you have when hypo or hyper to get an early intervention and adjustment to dose. What has been the course of your disease so far. Is Carbimazole working for you ? I am interested to know what reasons the 2 endos gave to support their preferred choice of treatment.
Titration endo - "...levels are high... we need to bring them down in the first instance... as a priority... titration is the preferred method..."
Block & replace endo - "...better mechanism to prevent slipping into hypo... less frequent bloodwork and consultation required..."
The gist of the rationale ^
So have you not started on Carbimazole ?
Personally I would start on titration and hope it suited me changing to B and R if problems arose. Both will need lots of monitoring especially at first and until you learn to read the signs of hypo and hyper to your body. Keep careful notes of dose/ blood results and symptoms as an aid.
I would have thought the other way around would have been more true... I.e. start with B&R and then go on to bomb it via titration?
This is only my personal opinion based on my own experience. Many do well on titration and it was of concern to me when I was changed to Band R that I would have to increase my Carbimazole dose to 20 or even 40 mg. to sufficiently block my thyroid and I had read doses over 10mg. were more likely to have side effects. Luckily I had a good endo prepared to experiment to find my lowest effective dose and lucky it was below 10. This would not be the same for everyone and that is why I would try titration first. You need patience and observation and trial and error to learn about what suits you best. You won't " bomb " it more it will gradually fizzle out !
I have started Carbimazole, 4 weeks ago now, and am due a blood test with the "titration endo" tomorrow, so I need to pick a path ASAP, because seeing two doctors has already crippled me financially
I was prescribed the titration method (block and replace wasn’t mentioned). It worked for me and was off medication totally at around 14 months. It sounds like both options can be successful. Good luck!
I was given a choice of having my thyroid removed, RAI, block and replace or Carbimazole. I chose Carbimazole after reading Elaine Moore's site. I came out in a nasty rash so I then changed to PTU.
Elaine's site is full of useful information and here is a link to it.
What is PTU?
It is an older trusted drug and it suited me better until my Endocrinologist over-dosed me on it. Always insist on regular blood tests to check your levels and if it is affecting your white blood cells or even your liver.
Carbimazole can cause a drop in your white blood cells, which fight infection – a condition is called neutropenia. This can put you at increased risk of getting infections.
I had got my wires confused so thought I'd update the thread.
According to the BLOCK & REPLACE endo it's EITHER titration OR block & replace but not typically both.
So now I'm REALLY confused about which method to opt for.
Any further sentiment?
Someone I know was on block and replace the same time I did tritration she could not keep her levels stable and unfortunately had to have her thyroid removed. I am not saying you should follow what I advise but over the last 10 years of researching this disease I don't believe block and replace to be the best option. No doubt someone will disagree with me but I am just speaking from my own experience.
Thanks Lora. There isn't a silver bullet I suppose. Interesting nonetheless. Let's continue probing the forum to see what others think.
Anyone else have anything to add on their understanding and/or experience with BLOCK & REPLACE versus TITRATION methods?
Have you read this?
elaine-moore.com/Articles/G...
Unfortunately not..
The link isn't working, but it may be something wrong on my side
It works for me
elaine-moore.com/Articles/G...
It does go to a further link which you accept by clicking on it.
Hi Lora - got it to work now it's an insightful article, but I can't see anything favouring titration over block and replace. Can you maybe extract the excerpt here by any chance?
Also, the floor remains open for any other opinions on the matter x
I believe that there is more chance of remission if you take just Carbimazole but I cannot remember where I read it now because it has been several years.
This is an interesting link.
Advice for block and replace please
Block and replace 
Block and replace - Any experience
Coming off block and replace
