Stopping Block and Replace

[asiatic]

Been on B&R many years for Graves/TED and now considering if it's time to stop and check for remission. I am in no rush but would welcome comments to help with deciding my next move.

2013-15 Some hypo symptoms but as TSH top of range told I was ok.

2016 Hyper. Started 20mg.Carbimazole ( TRAb 16. TPO/ TG negative)

2016-17 Carbimazole titrated 20/15/10/5/stop/5 . TSH varied between negligible and 39. ft4 between over and under range. TRAb 16.

2018 started B&R 20mg.C/50mcg Levo. fT3 23% in range and hypo symptoms.

2018-19 Various adjustments but settled for 10/50. (fT3 57 % in range and feel well

2020 Stress ( death of husband ) fT3 27 % in range. Increase Levo 10/75.

2021 fT3 63% in range reduce Carb to 7.5/75. Then Covid jag Reaction ?? Periocular Dermatitis/ CRP and Ferritin increase. fT3 reduces to 37 % in range.

2022 TSH 0.38 (,35-5) fT4 56% fT3 23%

I have recently reduced to 5mg C/75mcg L and will test/ adjust in Dec. All bits and minerals optimal

So knowledgeable people, do you think my tendency towards hypo and rising TSH might indicate I now have more Blocking than Stimulating Antibodies ? I know on Carbimazole alone a rising TSH on a low dose might suggest nearing remission but what is the story on Block and Replace ? All comments and suggestions VERY gratefully received .

[PurpleNails Administrator]

Most feel well with mid range thyroid levels when on carbimazole.

  Doctors often like to see FT4 & FT3 as low as possible or more to the point a TSH in range.  With your fluctuating / unpredictable level as you describe, having levels on the lower side gives doctors lots of room to notice rising levels before the reach over range.  

How do you currently feel? Do you have hypo symptoms with FT3 being quite low of do you feel good? 

It think your right about blocking antibodies bring levels down with stimulators antibodies causing a rise.  

Trab measures blocking, stimulating & neutral type antibodies in 1 total measure.

  TSI will measure stimulating only so favoured by some doctors as a Graves marker.

Blocking alone isn’t something tested outside research setting.  

Note if you have TED - TRab is the preferred marker.  Although I have hyper (nodule) no positive thyroid antibodies of any sort - many specialist have diagnosed me with TED.  Other doctors insist I don’t as I don’t have autoimmune - so not TED.  So while I’m passed between all the departments no one confirm or treat what ever my eye issue might be. 

I think given your case I’d stay on the 5mg carbimazole and increase the LT4.  

I might do it more gradually than standard and try a 12.5 increase at first.  

Hopefully raising FT4 will give a lift to FT3 which is on the low side.  

Sorry to read about the loss of your husband.

[asiatic in reply to PurpleNails]

After recent reduction I feel ok, no different from before which is perhaps a LITTLE hypo. I agree with you that my next step should be a small increase in Levo ( after I see blood results in Dec. ) After 5 GP'S telling me they know little about AITD and always passing a message via Receptionist that my blood results are good, I now adjust without telling them. OK as I have been reducing. To increase my Levo prescription will involve an explanation. I quite look forward to seeing how that goes !

Thanks for your input and hope you get answers for your TED. I was fortunate mine confirmed with an MRI.

[ling]

Sorry to hear about your husband

[asiatic in reply to ling]

tthanks

[ling]

I don't know enough to comment with regards to B&R. However, I do think that trying to come off carbimazole, is a good idea if your condition allows you, since long term carbimazole, though rare, can potentially cause vasculitis.

Btw what is the range for your TRAb results?

Best wishes.

[asiatic in reply to ling]

doc just wrote 16u/l for

[ling in reply to asiatic]

Wonder if that's high or low? TRAb has huge significance for me. A slight increase, even if in range, signals a return of symptoms and TED.

You might be onto something about the blocking and stimulating antibodies though.

[pennyannie]

Hey there - I have no idea but just wanted to send a hug or two.

Have you been tracking antibodies at all and can see a pattern evolving ?

You have been dealing with this for some considerable time, how are you feeling on a day to day basis ?

[asiatic in reply to pennyannie]

Thanks pennyannie. I feel well. If hypo symptoms start appearing I adjust, similar to a Diabetic with their insulin but on a slower time scale. It would have been interesting to track my antibodies. TRAb rather than TSI is the choice of my endo who has measured it twice. If as I suspect, I now have blocking antibodies dominating, TRAb would remain high and I am uncertain what that means regards Remission. Perhaps I will post this question on Elaine Moore's forum after results of my next blood test.

[pennyannie in reply to asiatic]

Good idea - looking back at my own situation I've been hypo from a child - but not diagnosed and just accepted a level of unwellness that was ' normal ' for me.

As a child very slow to develop, left handed, undiagnosed dyslexia, and alopecia and urticaria at 11 plus and GCE time, and growing up very overweight.

So, as I understand things there is a Graves/hypo where you're TSH never rises enough and guess if antibodies are not run and blocking antibodies not identified you carry on trying to sort things out for yourself which I now see was what I did throughout my 20's /40's.

Mid 30's diagnosed with Iritis and had emergency laser treatment in both eyes at Moorfields Hospital.

In my mid 50's diagnosed Graves - my only symptoms were insomnia, dry gritty eyes and the exhaustion that I just lived with - I had been attacked 3 months previously and think this must have triggered my thyroid readings that caused the alarm - during Carbimazole treatment, which suited me very well,

When on the Carbimazole my originaI symptoms were relieved and I felt quite normal but for a couple of big unpleasant short lived surges and I had a period of a couple of months around a year into At drug treatment when I found I could eat for England and loose weight, had energy and felt invincible and this lasted for around 2 months and then I plateaued to ' my normal ' again .

After RAI thyroid ablation T4 worked well for several years but then I became very unwell - details on my profile page - I now self medicate with Natural Desiccated Thyroid and am much improved and managing lingering Graves, thyroid eye disease and hypothyroidism.

I don't know if this brief recap of my Graves journey makes any sense or of any interest but just know the TSH seen in isolation is a waste of time and once a Graves patient always a Graves patient, as Graves antibodies can attach themselves to TSH receptor sites and read no one knows when or if, this situation is resolved.

Graves is known to burn itself out, given enough time, I think it all a question of the degree of incapacity being tolerated and your dose adjustments, like as you say ' a diabetic ' makes perfect sense to me and long term believe you will need thyroid hormone replacement as I guess there's only ' so much ' the gland can contend with.

[ling in reply to asiatic]

Good idea to run it by Elaine. I would love to know if its a good idea to try stopping. Logically, if there are more blocking than stimulating TRAb, then your chances of relapsing should be lesser. But as this is still a TRAb antibody, what are the implications if the level is maybe high or out of range?

[asiatic in reply to ling]

yes I would like more info on this. Interesting that we can both look back to being possibly hypo before an event tipped us into hyper Graves. I suspect the trigger for me was an " overload" of 3 vaccinations prior to a holiday in Asia. Do you have TPO/ TG antibodies ? Because I test negative for them it leads me to lay the blame for my hypo squarely on those pesky Blocking antibodies which I think need more investigating to understand their role.

[ling in reply to asiatic]

My problem is not with becoming hypo. For me, its always an excess of stimulating antibodies, even after 8 years of carbimazole.

I was tested for TPO when diagnosed but it was negative. Have never been tested for TG.

What was the reason Levo was added to carbimazole and you started trying B&R?

[asiatic in reply to ling]

you will see from my post that in 2016 my results were all over the place. I responded quickly to Carbimazole becoming hypo even on low dose but as TRAb was high it was thought I would relapse if it was stopped. Band R kept me more stable.

[ling in reply to asiatic]

How low was that low dose of carbimazole that made you hypo?

[asiatic]

on 5mg. Carbimazole - TSH 14.5/fT4 below range. Stopped for 4 weeks but TSH dropped to 0.08 and fT4 had climbed to top of range so was put back on 5mg before starting B&R

[ling in reply to asiatic]

Becoming upset reading this.

Was the dose ever lowered below 5mg?

Your Graves trajectory sounds kinda like mine - high TRAb, respond quickly to initial dose of carbimazole

Also sounds like NICE Graves protocol not adhered to??

[asiatic in reply to ling]

if I had known then what I know now I would have tried 2.5 mg. Carbimazole. Unfortunately the endo was a diabetes specialist. Although my knowledge then was scant, his was too. He said I had relapsed based solely on my high pulse. I have white coat syndrome and also could feel myself getting angrier and angrier at his obvious lack of knowledge. Pulse returned to normal 5 mins after getting away from him and his lecture in front of a student how he would treat me if I was pregnant. I'm in my 70's 🤣

[ling in reply to asiatic]

Feel really sorry you had to meet with a psycho right in the crucial beginning

The thing to have done in the beginning, was basically to titrate the carbimazole till it takes the minimum dose to keep thyroid levels in range. A minimum dose could be something as little as 1.25mg a day or even lower the longer you are on the carbimazole.

And NO stopping of the carbimazole owing to the high TRAb.

My experience is a case in point. Within the first 6 months of starting carbimazole in 2015, my dose went from 30mg to 2.5mg and stayed there till 2020 when it was cut to 1.25mg. The dose titration was guided by TSH and FT4 levels.

High TRAb. I started with very high TRAb 8.9(0.0-1.0) which persisted till 2017 when it finally came down to 5.6. Fortunately for me, i had read somewhere (probably NICE guidelines, a godsend when u don't have a doc who knows the intricacies of Graves), that carbimazole should not be stopped when TRAb was high, and that carbimazole taken over the longer or long term, can bring down high TRAb, which it did in my case, and continued to drop till Dec 2019 when it was less than 0.3. I feel best when my TRAb is negligible.

In your case. Going forward, whether u intend to try and come off carbi or maybe try carbi alone, ONE VERY IMPORTANT THING you need to first confirm, is to check your TRAb level. If this is still high, i think it should not be surprising since taking carbi with Levo likely blunts the effect of the carbimazole. If u want to try carbi alone, make sure to test frequently, say every 3 weeks, till you get to a dose that doesn't cause you to go hypo. It would be best if you could do the titrations with the guidance of a doctor who knows something about managing Graves.

At this point, after learning the details of your case, i don't know if its that important to know if your TRAb are stimulating or blocking ones. The fact is, the TRAb level has to come down into range before you have a good chance of going into remission without carbimazole.

Best wishes.

[asiatic in reply to ling]

I find it all very confusing. Have you read the following two papers

thyroidpatients.ca/2018/12/...

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

From these if I am interpreting them correctly I am now hypo and my thyroid possibly atrophied so would assume Carbimazole is having little or no effect so I could stop it and just treat my hypothyroidism. As I said I am very confused. Thank you for taking the time to discuss this with me. I have posted on Elaine Moore’s forum and will let you know her answer.

[ling in reply to asiatic]

Yes, read these papers a long time ago. Will take a look again. The second paper's ABs gave me a big fat headache : ) Yes please let me know what Elaine says.

I hope things are not as complicated as you think. Atrophic Thyroiditis is a very serious condition. I definitely hope you don't have it. Our resident AT expert is TSH110 

Maybe she can shed some light.

Lastly, to confirm any current thyroid condition, you'll need to have antibodies tested. I hope you can do that before making a final decision.

You are a lovely lady asiatic, and I wish you well.

With best wishes.

[tattybogle in reply to asiatic]

hi asiatic , just been reading the second paper you linked to ,, very interesting read thankyou , i'd not seen that one before. ( ncbi.nlm.nih.gov/pmc/articl... )

i note you have only TRab results but not TSI.

it occurs to me that if you could get someone to test TSI and they were relatively (?) low , then presumably that would be an indicator that a high TRab result was actually caused by blocking antibodies ??

The patient (in figure 4) who went from hypo to hypo , continues to have high TBII ( equivalent to TRab, ie measures both stimulating and blocking)... but her initially high stimulating antibodies have now been replaced by blocking ones.

see figure 4b ..... TBII still high at 30 months onwards.

but as shown by figure 4a , her TSI (stimulating) remain low from 10 months onwards .

probably not much practical help re "deciding what to do "...just thinking out loud , as the subject of 'blocking TRab and atrophic thyroiditis' interests me (and gives me a headache in equal measure lol)

[asiatic in reply to tattybogle]

Getting TSI would be nigh on impossible. Currently “ preparing my case” just to have Levo increased a little. As you say, not sure it would help in deciding my next step. I alternate between periods of acceptance of where I am on my journey,( it helps I feel well) and times of obsessively reading ( yes headache inducing ) to consider my next step. At those times it is so helpful to have this forum to turn to. Many of your replies to other posters have made me smile. Thank you for your reply

[Trying2saveThyroid24]

My sincere and deepest condolences on the loss of your husband so sorry, my own thyroid crisis I feel was triggered in hindsight by the sudden shock of losing my beloved dad, Im learning about adrenal stress and thyroid sensitivity, my palpatations I thought were grief! Sending you love x