Carbimazole and weight!

[debbiejayn]

I was diagnosed with Graves around 4yrs ago, I was put on Carbimazole and after about 18 months went into remission.. I was off the tablets for about 6months,and I relapsed .I have been on 10mg of Carb since,and recently had symptoms of being underactive. My lastTSH was 3.66 and T4 16.6. Carb reduced to 5mg.Endo is keen for me to have Radio iodine.. I have struggled with weight,and have read that Radio iodine, causes further weight gain. I have early onset Osteoarthritis, and am awaiting knee replacements. I'm currently on a very strict diet (and sugar free since Christmas!) and have managed to lose some weight , This is recommended with arthritis..How long can I continue on 5mg Carb?Thankyou.x

[PurpleNails Administrator]

Doctors imply there’s a time limit to carbimazole use but there is no scientific basis for that. It’s the standard practice set as best approach for most.

Monitoring hyper is considered trickier & more expensive than treating hypo.

If your well & stable on carbimazole “delay” RAI (indefinitely if necessary) say it’s not convenient right now.

last TSH was 3.66 and T4 16.6. Do you have lab range?

TSH is likely too high. FT4 looks in range by most ranges but no FT3 tested. If that’s low it will cause hypo symptoms including weight gain.

[PurpleNails Administrator]

this post may be of interest

healthunlocked.com/thyroidu...

[debbiejayn in reply to PurpleNails]

Thankyou....That Post is certainly interesting, and if I'm honest, the conclusion I was hoping for!...I will definitely stick to my guns and refuse the RAI.....D.x

[pennyannie]

Hey there again :

When metabolism is running too fast you will have a faster than ' normal ' - metabolism - and likely an out of range T3/T4 and a suppressed TSH at 0.01 and considered hyperthyroid :

What we have never had confirmed is which antibodies were found over range and positive at diagnosis as there is more then one reason for why you have become so called ' hyper ' :

But we are likely looking at an auto immune disease and something has triggered your immune system to turn and attack your body rather than defend it, and currently mainstream medical have no answers nor cure for either Graves or Hashimoto's - both AI diseases that start off the same way and tend to attack the thyroid and eyes .

The Anti Thyroid drug semi-blocks your new daily production of thyroid hormones and generally speaking a slowed metabolism can happen and you may put on weight though some people loose weight, while others have no weight differential and can eat for England.

The level of the AT should be regularly monitored through blood tests every 6-8 weeks and adjusted down as the T3 and T4 fall back down into their ranges as otherwise you risk your T3 and T4 falling too far through the ranges with you experiencing the equally disabling symptoms of hypothyroidism.

All the AT drug does is ' buy you time ' much like a plane going around in a circle above while waiting for a landing slot and the hope is the Carbimazole alleviates the worst of the symptoms being tolerated so one's ' life can go on ' - while we wait for your immune system to calm down and hopefully your thyroid return to normal function without the need for any drugs.

I think I've sent you these before ;

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

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

I deeply regret having had RAI treatment back in 2004 but knew no different and wasn't made aware of the potential dangers in drinking this toxic substance that I read about later is also taken up - to a lesser extent - by other glands and organs in the body and which slowly burns out and disables your thyroid in situ.

Ultimately after RAI treatment you will become primary hypothyroid and totally reliant on thyroid hormone replacement for the rest of your life and the ' weight issue ' is very common with very many forum members whether they have a thyroid or not.

Loosing your thyroid is not just a weight issue - the thyroid is a major gland responsible for full body synchronisation from your physicality through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Currently the NHS primary care treatment is just T4 thyroid hormone replacement and if this does not restore your health and well being - other than anti depressants - your doctor can't prescribe any of the other treatment options that were widely available in primary care 20 years ago -

and currently NICE guidelines mean you will either be referred and be assessed by the NHS as needing T3 or NDT - or most likely need to go private - or if you can't afford to go private - self medicate as I have done in order to restore health and well being.

With the current research there is no reason not to stay on the AT medication:

Maybe your dose of the AT medication needs titrating down further -

do you have any T3 and T4 readings and ranges you can share with forum members ?

If you do have Graves your body is in a ' heightened state ' and I do not think it wise to be working out and stressing your body more than it already is.

Rest, relaxation and healing your body are recommended and suggest you read around on Elaine Moore with regard to the immune system and trying to work out your own stress and anxiety triggers - elaine-moore.com

[debbiejayn in reply to pennyannie]

..thankyou pennieannie...It was your post regarding Radioiodine,that stuck in my mind..I remember you saying that you regret having it done and I really don't want it either.. I currently can't Work Out..I have Osteoporosis, and need new knees!..I do practice Mindfulness and relaxation, and eat well..My stresses are difficult..My husband has recurrent Prostate Cancer, and I have a daughter who is Autistic, and struggles.. but I think I cope well considering. I am currently seeing an Endo privately, but can't do this indefinitely as the Health insurance ended when my husband stopped working. I will look at Elaine Moores book..I definately don't want RI...Thankyou so much.D.x

[pennyannie in reply to debbiejayn]

Oh - I 'm sorry, I don't remember writing to you before - mind you I have written to quite a few people !!

So sorry to learn of all this - you have a lot going on - so just try and cut yourself some slack - as you know ' with your sensible head on ' you can't control everything - and I feel your worry and stress :

Why can't you switch to an NHS endo and whilst they may suggest the same ' resolution ' you are not obliged to say ' yes ' and they can't stop the AT drug -

though will probably suggest once stable that your doctor manage your thyroid levels so as to free up the O/P waiting list.

There are people on this forum who have some AT medication in the medicine cupboard and when they sense their thyroid playing up again, simply restart the Carbimazole to help get them ' through / over ' whatever has triggered and upset their immune system response.

[debbiejayn in reply to pennyannie]

..Yes I think that's the best idea..I will definitely resist the RAI.. I feel like it's being suggested for convenience of the medical profession, not me!. I think I could manage my condition... I definately felt that my TSH was too high, which is why I got it checked.. Thankyou!.D..

[pennyannie in reply to debbiejayn]

Just a little confused - with Graves or an overactive thyroid the TSH is low and generally under the range at around 0.01 - and never a high TSH ??

What do you consider a high TSH and were you taking any medication then - as with a TSH over 3 you are likely suffering symptoms of hypothyroidism - and not hyperthyroidism.

You may have had a TSH over 3 when on the AT medication which is then suggesting the dose of the AT drug too high and needing titrating down as it's blocking too much of your own new daily thyroid hormone production.

So I'm back asking if you ever had proof of which antibodies were over range at diagnosis - Graves antibodies are generally written as a TR ab or TSI and words to the effect of a TSH Thyroid Receptor and a number :

It can become very confusing as some symptoms can be experienced and sit in both hyper and hypo list of symptoms.

Yes it is suggested as a means of convenience and to move you through the system - maybe take copies of the 3 research papers and ask your doctor for an honest opinion.

[debbiejayn in reply to pennyannie]

Hi..Yes when I was originally diagnosed 4 years ago my TSH was very low..Graves antibodies were found(Very experienced Endo in a well respected Private hospital). I started on 20mg Carb,which was gradually reduced and I went into remission... Unfortunately, following my husbands recurrence of cancer I went hyper again,and have been on 10mg for at least a year...Its due to me feeling symptoms of hypo that made me go back, and after a TSH of 3.66, I'm down to 5mg..It still seems that the preferred route of doctors is via RAI and I don't want it!.D.x

[pennyannie in reply to debbiejayn]

OK understand - yes a ' high ' TSH of 3.66 is in hypo territory and the AT drug needs reducing further - can you chop in half and try 2.50 mcg daily there by increasing just a little more of your own thyroid hormones to alleviate symptoms of hypothyroidism being tolerated ?

[debbiejayn in reply to pennyannie]

Hi..My tablets are tiny,and don't chop!.I've got to take 5mg for a couple of months,then back to the Endo...I think I will stop private appts..(costing me a small fortune...!) and get my tests done at my GPs surgery..its free...I will then know results,and how my levels are...

[pennyannie in reply to debbiejayn]

Ok - maybe try 5 mcg every other day if the tablets too small to chop :

Good idea ;

[debbiejayn in reply to pennyannie]

That is a good idea...Thankyou...