Coming off block and replace

[Cavapoochonowner]

Hi,I've just come off block and replace.I took my last tablets, 40mg carbimazol and 100mcg levothyroxine on 30th September.I have graves disease and thyroid eye disease.I'm supposed to have a blood test at the end of November to check my levels but my endo said I could test earlier if I thought my symptoms had come back.I do feel as if they have.I feel shaky, hot, have badly aching muscles and joints and my neck feels tender.I'm wondering if it too soon to be experiencing this, whether I could be imagining it.How long would it take for the drugs to have left my system?Also I had a flu jab on Friday, could my symptoms be the result of that?I would be grateful for any advice.Thankyou.

[asiatic]

I am amazed you have been told to stop and not titrated down. I have Graves and TED and have been titrating down the last couple of years and now at 5mg. Carb and 50mcg Levo. Were your antibody levels checked before you were told to stop ? I will be interested to see what other replies you receive as personally I would worry about just stopping especially if your TED is still active.

[Cavapoochonowner in reply to asiatic]

Hi, thankyou for your reply.In my letter from the endo he says that my blood tests show that my thyroid is well controlled and after stopping my tablets I should have a blood test either if I feel my symptoms have come back or towards the end of November so he can check and make sure I'm euthyroid.Due to covid my last consultation in July was done over the phone and I did feel well.I will also be interested to see what anyone else says.Thanks again.

[asiatic in reply to Cavapoochonowner]

Perhaps it is the drugs that are keeping your thyroid well controlled and stopping them could make you very unwell. Can you share your latest blood tests. How long have you been on B and R. Did they measure TRab ? My endo told me he would not take me off meds until TRab was under 5 . Is your TED still active. I worry that a relapse could worsen it.

[Cavapoochonowner in reply to asiatic]

Hi again.I've been on block and replace since Dec 2019.Before that they tried me on titration.I tried that from Sept 2018 but struggled to get the right levels because I couldn't get my endo appointments close enough together.My free t4 went as low as 9 range 10 to 18.7. And as high as 29.7 range 10 to 18.7. As far as I know my Trab haven't been tested again.My eyes are fairly stable but I have days when they are dry, gritty and bloodshot.I haven't got my latest bloods as they go to the hospital.I will ring my endos secretary to see if she can post them to me.I used to ask him during the appointment but the last one was over the phone.I'm online at my GPs but I don't think I can see hospital requested bloods.I think I've taken my eye off the ball a bit as it seemed to be going well.Thankyou for the information.

[asiatic in reply to Cavapoochonowner]

It took many changes and blood tests to find my lowest effective dose. The endo set up a system whereby GP did the blood test and then I emailed the results along with symptoms to the endo who would change the dose. I felt this was an efficient method and didn't take up much of his time. I have been medicated for 5 years. First on Carb alone then B and R about 3 years. I have read that being on a low dose longterm gives the best chance of staying in remission and the fact my TSH is now rising may indicate my antibodies are falling. I do consult Elaine Moore before any major changes. According to her those with TED are likely to have blocking TRAb antibodies and I may need to keep taking a little levo.

[Cavapoochonowner in reply to asiatic]

Hello again, I've spoken to my endos secretary and she says she will ask him for permission to send me my blood test results for this year.Ive decided not to wait and have booked a blood test for tomorrow.My doctors have stopped doing 3rd party blood tests so I have to go to hospital.Luckily my husband is off work tomorrow.I think I'll have to really keep my eye on everything again.My blood form only says to check TSH so I have cheekily added T4.My endo did add it for me on a previous occasion when I said how could we try and get my T4 near 18 if we didn't test for it?I think I'll have to take a leaf out of your book and be a bit more proactive.Thanks for your advice.

[asiatic in reply to Cavapoochonowner]

Yes it is scandalous we need to read up and be proactive otherwise we are abandoned and not optimally treated. Hope things work out for you.

[Cavapoochonowner in reply to asiatic]

Hi again.The endo rang me this morning and my ft4 is 63.It should be around 18.I think he was surprised as I've only been off my tablets for 2 weeks.Ive to start carbimozole again 40mg per day and blood test at end of. November.Hopefully I can try titration again.Could I also ask if youve ever had an ultrasound of your thyroid as ive never had one?

[asiatic in reply to Cavapoochonowner]

If he were my endo I wouldn't have much confidence in him. What were your levels when he stopped meds. ?? He told you they were perfect so why not go back to the dose you were taking then in the hope you return to that and then slowly very slowly you could reduce to the lowest effective dose. I would worry that the Carb alone would make you hypo. That's probably why he changed you to B and R so why has he gone back to Carb alone. He isn't being consistent. Ultrasound is a good step. I did have one which showed a small diffuse goitre in keeping with Graves. A TRab test confirmed this. It also showed a nodule which disappeared after I started Carbimazole.

[Cavapoochonowner in reply to asiatic]

Thanks for your reply.I actually asked if I could try carbimazol only again as I thought this would be best if I need to stay on it long term.I'm hoping that now we've got the blood testing and phoning his secterary in place it'll be easier to find the best dose.In your experience is carbimazol only not a good option?

[asiatic in reply to Cavapoochonowner]

We are all different so it might be fine for you. Carbimazole very quickly brought my levels down and I became hypo which worsened my TED. Because my TRAb was still high I would have relapsed if meds were stopped so Levo was added. Perhaps if you collect together all your blood results and note what dose you were on a clearer picture might emerge on how to go forward

[Lora7again in reply to Cavapoochonowner]

She doesn't have to ask permission and he should know this because it is the law. I recently asked the hospital where my rubbish Endocrinologist gave me my treatment 10 years ago. They sent me a form which I filled in via email and sent them a copy of my passport and I received all my records including a disc of an ultrasound of my goiter. Don't let them tell you that you are not entitled to see all your records and results because you are.

nhs.uk/using-the-nhs/about-...

[Cavapoochonowner in reply to Lora7again]

Thankyou for the reply.I'll give them time to send them but if they don't arrive I'll get back in touch.It would be so much easier if I could see them myself but if they are not GP requested bloods only the GP can access them so the receptionist said . If I have any problems I'll just have a phone consultation with my GP and they can tell me over the phone.Thanks again

[Lora7again in reply to Cavapoochonowner]

Does your surgery have Patients Access? Mine does so I can just log in and read my results and I don't even have to get the receptionist or GP involved.

[Cavapoochonowner in reply to Lora7again]

Hi, yes it does have patient access and I can see anything done at my GP surgery but not blood tests requested by the hospital.It's so frustrating having to jump through all these hoops when it could be so simple.I'm having a blood test tomorrow as I feel so awful.Hopefully now I have a bit more information things will move a bit quicker.Thanks for the reply.

[Lora7again in reply to Cavapoochonowner]

I just filled in a form and I was given a login number and I was then able to view all my records for the last 10 years. It was not pleasant to read some of the personal remarks made about me when I had untreated thyroid disease. One GP had written"delusional" about me which I have asked to be removed but that hasn't happened yet. I think this is one of the reasons they don't want us to read our records because years ago they would make remarks about us. Now they don't because they know we can read them.

[Cavapoochonowner in reply to Lora7again]

I'll try again when I speak to the surgery.Covid is making things more difficult as well you can't get to see anyone.

[Minnskimoo in reply to Lora7again]

Abysmal, isn’t it? How appalling and uncaring- ‘delusional’ .

I’ve got ‘hypochondriasis’ on my records before being diagnosed with stage 4 endometriosis! And it is still on there now - after 22 years!

It is about time those sort of derogatory comments were put where they belong - in the medical file labelled Th3 B1N . 😏

[Valarian in reply to Cavapoochonowner]

You really need FT3 as well, as this could go up ahead of FT4.

Obviously it will vary from one lab/thyroid clinic to another, but I’ve always had TSH, FT3 and FT4 tested. That said, my TSH has remained rock bottom, so FT4 at least would probably have been tested anyway. My test forms usually say TFTs and Carbimazole.

[Valarian in reply to Cavapoochonowner]

I really don’t see how they can monitor your Graves’ without routinely testing TSH, FT4 and FT3.

[Valarian in reply to asiatic]

Although most people here with Graves’ seem to be on the titration approach, ‘block and replace’ is also common. Outcomes appear to be similar.

The main advantage of B&R appears to be that because the thyroid is suppressed and natural thyroid hormone replaced with levothyroxine, patients are unlikely to see their thyroid levels dip below the range, or swing between high and low if there are problems adjusting the dose to reflect the (changing) impact of Graves’ on thyroid levels.

The downside is that when you come off medication, you will have less idea whether your Graves’ is likely to be in remission or not. However, in both cases it is in effect a case of ‘wait and see’. Usually the overall dose of carbimazole over the period will be greater with B&R than titration.

btf-thyroid.org/antithyroid...

[asiatic in reply to Valarian]

Although I understand the rationale of giving a high dose of Carbimazole in B and R

imperialendo.com/for-doctor...

I do think there is a case to be made in trying to find the lowest dose of Carbimazole to keep a Graves patient euthyroid. In my case why would I take 40 mg. when 5 mg. works just as well and with less risk of side effects.

I read a paper ( sorry can't find reference ) that TED was better controlled on a long term (10 years ) low dose B and R. Am I wrong to be cynical that docs haven't the time to spend adjusting each patient's dose and just give 40mg. knowing it will work for the majority. Luckily I had an endo who understood I could stay on this low dose until my antibodies reduced. I think this is happening as my TSH is now in range. My next step is to reduce to 2.5mg then eventually stop Carb but will probably need to keep taking 50 mcg Levo. I know some will need the higher dose but I suspect many don't. We should be able to experiment under an doctor's guidance to find our unique sweet spot.

[Cavapoochonowner in reply to asiatic]

Thanks for your reply and for the history of your treatment.I will look further into this and try to find the best treatment for me.Hopefully the high dose of carbimazol will only be fir a shirt time until my levels come down a bit.Actually my treatment during the covid epidemic has been better.I have better contact with my endo and hopefully this will be an advantage while I try to get my levels right.Obviously I my graves is still very active after more than 2 years so I have a long way to go.Thanks again.

[asiatic in reply to Cavapoochonowner]

I wish you all the best on your journey

[Lora7again]

I stopped PTU abruptly because I felt like my thyroid levels were too low and I walked out on my Endocrinologist but that was because he was incompetent. You can read my story on my profile page if you are interested. I have heard of this being done if you are on block and replace and you then have a blood test in a few weeks to see what your levels are like to see if you are going into remission. I would have a look at Elaine Moore's site and ask her about it on her forum. She is very knowledgeable about Graves' and has helped me a lot over the years.

Here is a link to her site.

elaine-moore.com/

[Cavapoochonowner in reply to Lora7again]

Hi again, had a blood test Tuesday.Called endos secretary today and he called me back within an hour.My ft4 is 63 and it should be around 18.Got to start back on carbimazol 40mg per day and do another blood test in 6 weeks.Asked to try titration again instead of block and replace.My ft4 was only 57 when I started all this in 2018.Glad I didn't wait for my blood test.Also I've never had an ultrasound of my thyroid, should I ask for one?Sitting here sweating cobs at the moment hopefully tablets shouldn't take too long to work.Thanks in advance

[Lora7again in reply to Cavapoochonowner]

You should have an ultrasound of your thyroid to check if you have a goiter or nodules. Hopefully you will start to feel better once the Carbimazole takes affect. Try not to worry because some people have been on Carbimazole for years and as long as they have regular blood tests etc. they are fine.

[humanbean]

Fruitandnutcase has experience of being on Block and Replace. Perhaps she might be able to help you.

[Valarian]

The half life of carbimazole is only approx 5.3 hours, but it may nevertheless be a a bit soon to retest, especially as you’ve just had the flu jab.

If your symptoms are from your vaccination, they should clear up within 2-3 days. Since you are beyond this, if your symptoms are no better, perhaps you could call your endo’s secretary and ask for a phone consultation. If they can’t organise this soon, I would just go for the blood test. Best case (fingers crossed) your thyroid levels will be fine, but you will have had an extra test. Worst case, the test will show your Graves’ has relapsed, but at least you’ll get treatment straightaway.

[Cavapoochonowner in reply to Valarian]

Hi, it wasn't the flu jab. My blood test results show my ft4 is 63.My endo rang me within an hour of my phone call to his secretary.I think he was shocked.My ft4 should be around 18.It was 57 when I was first diagnosed 2 years ago.He has put me on 40mg of carbimazol again and I am to retest in 6 weeks.I knew my symptoms had come back but I was shocked myself at the high levels. Thanks for your reply.

[Valarian in reply to Cavapoochonowner]

Sorry to hear your Graves’ has relapsed

[Cavapoochonowner in reply to Valarian]

Thankyou

[ZoBo]

Oooh flu jab, that's one reason why I don't fancy it!

[Cavapoochonowner in reply to ZoBo]

Hi, all my family have had the flu jab every year since my eldest son was diagnosed with hodgkins lymphoma.I do normally feel a bit off it every year after having it , but I'd rather that than have the real thing.However it wasn't the flu jab that was causing me to feel rotten.My blood results showed my ft4 was 63 instead of around 18.I'm now back on 40mg of carbimazol and have to retest in 6 weeks.I'm glad I listened to my body and checked.