Well we're back to the Endo to be told we're trying Stop and Block again.

[Billyboy2u]

some may remember my thyroid story as it's been a while since I've posted, but I'm still a regular reader of posts. Tuesday the day all meds are being stopped.

I refused the op to remove my thyroid and have it burned out through the great advice in here plus I wasn't keen on having a op at my age either. I retire in April so looking forward to the good life.

I've been a lucky one. I've an over active thyroid but I'm not suffering like some. Now and then I have a day where I can't be bothered to do anything. That's all I have. Although at the start, because no one knew what was wrong with me I went way off the charts.

well I'll keep you all informed of my journey without any meds. As there's new reports coming out saying the longer you just keep going without having it removed the better it is and there's hope your thyroid will start working again on its own. As let's face it. If I still go hyper again they can just slow it down with Levothyroxine. Or is it Carbimazole. Well one of the two any way. lol.

Take care everyone and hope all hyperactive one's and underactive ones have a good a time as I am.

[pennyannie]

Hey there again :

So - just looked back and your first post/question on this forum was around 4 years ago -

asking what is Carbimazole used for ?

So, you are now relinquishing your relationship with Carbimazole - and hoping your thyroid will reset itself.

What dose of this AT drug are you coming off from and just interested as to if your antibodies have been rerun at this point in time.

Your metabolism has been somewhat controlled by the AT drug so - go slow - record any symptoms that pop up - and ensure you maintain core strength vitamins and minerals as these stand you in good stead whatever comes your way.

Good luck and keep us in the loop :

[Sparklingsunshine]

Good luck, wishing you health and happiness in your forthcoming retirement 😁 keep us updated.

[Billyboy2u]

thanks guys.. really appreciated. Yeh my levels have been controlled well on the 150 mg Levo and the the 2 30mg Carbimazole tablets. I also get B12 injections throughout the year to keep those levels up too.

I have regular blood tests ever 3 months which include B12, Feritin and Folate. (I'm a bit surprised that so many people pay for those tests to be done when your GP can arrange them. Or does that all change if you have the op, it burnt out ? ).

Thanks Pennyannie. Yes been a long time 4 years.... still going well. So hoping this time the old thyroid kicks into action itself. lol

[helvella Administrator Thyroid UK in reply to Billyboy2u]

In the Pernicious Anaemia Society forum, it is often quoted that there is no point in doing B12 blood tests once you are getting injections.

It would be quite wrong to wait until your B12 was at the bottom before giving you another injection. And an injection makes your B12 incredibly high.

It reveals absolutely nothing.

[Sparklingsunshine in reply to helvella]

I've been on injections for years, every 2 months in my case but the GP still orders B12 as part of the whole blood test malarkey whenever I've presented with a new symptom.

They always get reprimanded by the lab 😆. A total waste of time and resources. Mine is off the charts, literally.

[Sparklingsunshine in reply to Billyboy2u]

Most hypos get an annual blood test that tests TSH and nothing else, unless you have a condition that can cause low folate, ferritin or B12, you wont be offered regular testing for those. Hence why many forum members have to test privately.

[Billyboy2u in reply to Sparklingsunshine]

I repeat I get tested every 3 months. Feritin and folate too.

[Sparklingsunshine in reply to Billyboy2u]

But unfortunately the rest of us don't. Perhaps its because you are on block and replace.

[Billyboy2u in reply to Sparklingsunshine]

May well be. Thanks I just wondered why people pay for tests. I thought they may be more thorough. Or something like that.

[Sparklingsunshine in reply to Billyboy2u]

No its sadly lack of availability. Its why many have to pay for private thyroid tests as the NHS often only tests TSH, which is useless.

[asiatic]

Well I'm speechless. Have I understood correctly. You are on 60mg. of Carbimazole (a hefty dose) plus 150mcg. Levothyroxine and the plan is to stop completely in spite of a history of relapsing ? I don't have a problem with stopping to check for remission but a big concern over how you proceed. Personally I would want my TRAb measured first and then only if this had reduced would very very slowly titrate down perhaps starting by halving Carbimazole.

[Billyboy2u in reply to asiatic]

Sorry it's 2 20mg of Carbimazole. Just checked it myself.

[asiatic in reply to Billyboy2u]

40mg. Carbimazole is still quite a high dose. Just so you can compare a different approach..... I have been on Block and Replace for 8years and am now considering if I should stop to check for remission. Currently taking a lot less than you - 5mg. Carb and 75 mcg. Levo. No way would I consider it safe even at this dose to just stop. I would fist cut back to 2.5 mg Carb. and check in a couple of months to see what to reduce next. I don't see the need to rush things. Slow and steady always safer.

[Billyboy2u in reply to asiatic]

It's the Endo that has suggested it after I refused surgery or having it burnt out. The idea behind it is to shock your thyroid into working again. If I relapse again I'll try and try again. As the op is out for me.

[Billyboy2u in reply to asiatic]

I don't have a history of relapsing as it were. The meds have kept me really stable. We tried stopping block n replace 2 years ago and I relapsed so they wanted to operate or burn it out. I thought that was way too soon to take drastic action. So we tried again. As said I've been really stable. We'll try again and if I fail or relapse. I'll suggest just going on one drug to slow my hypo down a bit.

[asiatic]

Like you I refused surgery and RAI and think I will achieve remission. We diverge in our approach to stopping BR. Me- slow and steady, you - shock the Thyroid . My approach is influenced by :-

Benefits of Long-Term Continuation of Low-Dose Methimazole

10.1155/2022/1705740. eCollection 2022.

And because I believe I am now “HYPO GRAVES”, Tania Smith in Thyroid patients Canada who says:-

You may be able to wean off thyroid therapy (cautiously and gradually). TBAb antibody simply disappears in most people,

Do you have evidence to back up your approach. We know stress, illness etc. can raise antibodies levels and I worry any “ shock” would have the same effect. As a minority group, I will following your approach with interest. I see no Blood / TSI / TRAb) results. It would be useful if these were recorded in your Bio especially 2 years ago when you stopped meds and relapsed. I wish you all the best.

[Billyboy2u in reply to asiatic]

See my latest reply below ...

[asiatic in reply to Billyboy2u]

I do understand that while feeling well you don't see the need to record blood test results. Without them it is difficult to comment. "within range" is meaningless. Where in range gives the clues and you learn where your sweetspot is and can adjust meds accordingly. I am suspicious they have lost your last few results. It is trusting of you to believe they are reducing....by how much ? If you relapse they now think Carbim alone rather than B R. Why ? What has changed or is it just easier for them ! I noticed your reply to another poster about feeling cold - usually a hypo symptom.

[Billyboy2u in reply to asiatic]

Again see other posting, and yes, sometimes I feel freezing. Not often but yes.

[pennyannie]

Hey there again Billy Boy -

Just catching up and rereading your post -

and just presumed you were on a very small dose of AT - wrong of me - apologies - I should have spent more time reading your past posts and asking questions - sorry -

I know stopping Block and Replace can be dramatic - and just a bit concerned as to the doses of the medications s you are currently taking :

anyway - so now I tend to agree with Asiatic :

I think it is pointless even considering stopping the medication if your Graves antibodies are positive and still raging - please tell me the antibodies are now negative having been recently rerun :

[Billyboy2u in reply to pennyannie]

I attended the Endos appointment yesterday and was told.

Since your antibodies have been gradually reducing, but for some reason we can't see your last few results. We'll take some bloods today and if there the same we'll go ahead with stopping your block and replace. Or if they are still just above or after we stop your meds, you relapse again. We'll set you a course of just Carbinazole.

I pusume my antibodies have been alright on the meds I'm taking. I don't keep records as I'm a lucky one that doesn't feel any different just the odd day where I can't be bothered to do anything.

It's not me that's pushing to stop the block and replace. I was only telling it as per my endo. Who still tried to persuade me to have it burn out, asking why I wanted to keep it. I told him what I've been told from you. Which I think was brilliant advice by the way plus I wasn't keen on the op in any case.

Since the hospital has taken over the blood tests all my records show is "within range". and not as per my GP ones that give the ranges and readings.

[pennyannie in reply to Billyboy2u]

Hey there again :

Did you give your endo copies of the 2 most recent research papers :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

as surely this content alone would cause some concern if he was genuinely concerned for your long term health and well being ?

Did he try and defend his stance and throw statistics at you ?

Interesting that they will run the antibodies again as routinely I believe it's just the once at diagnosis :

Seems to me it's all a question of reducing O/P waiting list times and moving patients through the system as quickly and as cheaply as possible.

As for the blood test ranges - I would think unless you are out of your area the laboratory is likely the same one as that used by your surgery - so the ranges likely the same :

I suggest you plot on the actual readings of your Free T3 and Free T4 -

Do you know if your TSH is on the floor at 0.01 or has this bounced back at all ?

They are forum members who have refused definitive treatment and have a back up supply of the AT drug in the cupboard - and when they sense their life stressors - restart the medication themselves - to help them over whatever is going on in their lives.

Graves can wax and wane throughout one's life and if you know your ' triggers ' the logical solution is to try and just your lifestyle accordingly.

I can't remember now what your initial symptoms were, or if you were able to even understand the reason why, but it seems your Graves is not much of a bother for you and the condition reads worse than the actual -

So they can't see your last couple of sets of results - but as you seem stable on

Block & Replace @ 150 mcg T4 + 40 mcg Carbimazole - daily -

let's stop both these medications and see what happens next -

have I understood this right ?

Thanks for the ' nod ' :

[Billyboy2u in reply to pennyannie]

Yes that seems to be the current situation. lol.

My original condition was my swollen feet and lower legs. Nothing would reduce them. My GP tried everything then I stopped eating and drinking and talked about childhood while discussing my legs. Later that day after a blood test I was rushed to hospital.

The endo did argue his case that much more people are having a more normal life with the thyroid removed than those who persist with medication.

Reguardless of which route we take now it seems I will be under my GP rather than the endo that changes on every visit. I will be receiving a letter explains what's to happen but it seems if stopping all meds or just been given Carbinazole. I'll be having blood tests each 6 weeks to monitor me then if alls well I'll be handed over to my GP.

I've only had 1 relapse and even that happened after my legs and feet swelled again and I felt as if I couldn't be bothered most days on my meds I'm lucky you could say as I'm very well with 4 or 6 days a year when I can't be bothered

Thanks for all the help

[pennyannie in reply to Billyboy2u]

No worries - so let's wait and see -

I don't know how the endo knows lives are better without a thyroid -

In my experience there is no hospital care post RAI - just a discharge note out to ill prepared doctors in primary care.

and true to form my ill health started some 8 years post RAI thyroid ablation much like the research paper time line and after 11 years I was met with denial and delay when I dare suggest my health issues were those of RAI thyroid ablation.

I started self medicating in 2018 after being refused both Natural Desiccated Thyroid and T3 - Liothyronine by the hospital in 2018 -

I found the RAI research paper in Thyroid UKs magazine Harmony dated 2019 and the Korean research paper is dated April 2021.

P.S. and yes as you say - endo's change with each appointment so there is no continuity of care nor interest in the patient as a person but as a mathematical equation that they choose to play with and aren't even there to follow through to the end.

[Billyboy2u in reply to pennyannie]

Agree 100%. After 6 appointments I'm about due to be handed over to my GP. lol.

I did mention about the care aspect after RAI and everything but the thyroid being blamed for illness after it's removed but was told not to believe everything I read on the net. I did state it's V on Thyroid U.K. but he didn't add anything.

If I were in pain, having bad days often or even Cancer related. I would look further into it but for the time being it's like having a runny nose to me.

I'll wait and see what happens now and take more care recording each bad day or anything else that goes wrong so the endos not free of me yet. I think he's of the opinion, since I'm not taking his advice, someone else can deal with me, with the restraints too on NHS and numbers awaiting.

As ever thanks for the advice and info to all.