Help please!: Please, please could anyone give me... - Thyroid UK

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Help please!

Quave
Quave

Please, please could anyone give me advice! I am new to this site. I was diagnosed with Graves’ disease and hyperthyroidism in September 2019, 13 months ago. My endocrinologist has now told me my condition will not reverse / stabilize on carbimazole as I couldnt get down to 5mg a day without my levels rising. She is now pushing me to have RAI or partial thyroidectomy which I am not happy with yet - especially reading some of the comments on this site. Have I been given enough time do you think?

When first diagnosed my TSH was <0.02, T3 was 18.7 and T4 was 59.7. I was started on 30mg of carbimazole - also propanalol, whilst continuing to take 100mg of sertraline for depression. The next month it was reduced to 10mg but levels rose so it went back up to 30mg. By April I had moved hypothyroid (?) TSH was0.98, T4 was 15.8 and T3 was 4.6 - I also developed mild TED then, which I still have. After that I stabilized on alternating 5 and 10mg of carbimazole but levels changed again when I went to 5mg so I am back alternating 5 and 10 again but feeling ok.

Is mine a hopeless case and should I opt for more radical treatment or do you think I should push to stay on carbimazole for longer? Will they do RAI or partial thyroidectomy when I still have active TED?

Can I also say your information has been a lifeline for me - I am learning so much. GP’s have been pretty hopeless!

57 Replies
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SlowDragon
SlowDragonAdministrator

Hopefully others who have Graves’ disease will pop along

Meanwhile you might also find Elaine Moore’s website helpful too - she had Graves

Not a decision to be rushed

Important to regularly retest vitamin D, folate, ferritin and B12

Have these been tested

Are you on or tried strictly gluten free diet?

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

Hello Quave and welcome to the forum :

Graves is an auto immune disease that attacks your body and more importantly when Graves attacks your thyroid it is considered by some to be " life threatening " because the thyroid is a major gland.

Your thyroid is the victim in all this and not the cause as the cause is your immune system attacking your body.

Sadly, currently, the medical profession do not know how to control or reduce the auto immune component of this disease so allocate around a 15/18 month window in outpatients and prescribe anti thyroid drugs to block your own thyroid hormone production.

The hope is that during this period your immune system " calms down " and you may find "remission " and the medical team consider their " job done " .

There is no reason why, if you are well on the AT drugs that this " time window " isn't extended : it is an option and should be offered : you must not have RAI as this may well exacerbate your TED, thyroid eye symptoms : and loosing your thyroid to an AI disease is a pretty drastic measure and actually, may probably compound your health issues.

The Elaine Moore Graves Disease Foundation website is an excellent adjunct to this amazing forum and Elaine has now spent many years researching, exploring and writing on alternative and more holistic options on understanding the AI component of this disease for which mainstream medical haven't the answers.

Graves does tend to be a stress and anxiety driven AI disease and would suggest that you look to yourself to become more able to understand your own " triggers " .

I too have Graves and unfortunately had to learn of my situation back to front. I was diagnosed in 2003 and had RAI in 2005 and became very unwell some 8 years later when, I ended up on the Thyroid uk website looking for help and then finding this wonderful forum.

I now manage lingering Graves, thyroid eye disease - caused by the RAI and hypothyroidism and am self medicating and having to buy my own medication as currently the NHS do not prescribe full thyroid hormone replacement which I need, having no thyroid production of my own.

There is an article on this website somewhere by a leading endocrinologist Professor A Toft entitled Thyroid Hormone Replacement - A Counterblast to Guidelines and published in 2017 as he was retiring from the NHS and I quote :

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease irrespective of age or number of recurrences of hyperthyroidism. "

P.S. Sorry but my ability to cut and paste revolves around scissors and glue !!!!

Quave
Quave in reply to pennyannie

Thank you both so much for getting back to me.

I have just got 2 of Elaine Moore’s books and have started reading. I read somewhere before that you shouldn’t have RAI with active TED but does the same apply to thyroidectomy?

Is 18 months the usual timescale the NHS allocate to taking carbimazole and do you think many people stay on it longer?

pennyannie
pennyannie in reply to Quave

Hey there

I found Elaine's books heavy going, but then, I am dyslexic and my cognitive functions were badly compromised when I became very unwell some 8 years post RAI.

I guess since I had already taken the toxic option of RAI, and reading of the potential consequences that I was actually dealing with very upsetting as I was getting no help through the NHS and referred to as a conundrum by my doctor. I did buy a second copy of Elaine's first book, for my doctor, but she declined it. Sorry - I've digressed.

I wasn't even given an option on treatment and believe my age at 56 decided my fate.

I believe it all comes down to " costs " :

Endocrinologists work to guidelines encouraging movement through the O/P department, and conclusions and discharges encouraged as O/P waiting times are always a " hot potato ' politically.

RAI is the cheapest most widely promoted treatment option as it's a quick O/P appointment and a discharge back out into primary care.

A thyroidectomy is cleaner and more precise but of course surgery, a hospital bed and then a discharge out into primary care.

Long term AT medication is even more expensive in terms of O/P appointments and medication.

Sadly I don't believe the care, knowledge, or ability is there, in primary care to treat primary hypothyroidism as can be seen by the ever growing numbers of people ( over 112 thousand last time I looked who are joining Thyroid uk ) and using this forum to find help. advice and answers.

A thyroidectomy should not affect TED - but why go there, if doing ok on the AT drugs.

It is an awful situation, very much like being between a rock and a hard place - the options are harsh, drink down a poison that burns out your thyroid in situ - or have your throat slit open - and either way destroy / disable a major, an important, major organ for an AI disease - it's not great really is it ??

I was told I wasn't allowed to stay on the AT medication as although I was well on Carbimazole, told it was dangerous and not in my best interests.

I read of people on here who have been on AT medication for years and now Professor Toft's most recent article, as previously detailed, actively encourages long term AT medication for Graves patients as currently he considers the other options may not have as successful an outcome, and I'm sure he knows and has seen a lot more than most people in this specialisation.

Quave
Quave in reply to pennyannie

Hi pennyannie,

Thank you for sharing all your experience with this - it’s both helpful and reassuring! I’m just dreading the telephone appointment I’ve got with my endocrinologist next week - but I’m glad I’m getting more informed!!!

pennyannie
pennyannie in reply to Quave

Hey there ;

Just explain that you haven't yet made up you mind, and you would like to keep your options open longer so you can become better informed :

Discuss your findings with the endo and explain that you have read RAI is not an option. as you already have signs and symptoms of thyroid eye disease, and can s/he furnish you with any further information to help in your decision making.

Just tell the truth, in that you need more time, and can s/he please continue your AT medication - you are allowed to change your mind, and they can't refuse to treat you :

Take good care - I know the nature of Graves can mean that you prefer to comply and not be seen as " difficult " but this is just a simply conversation and a tick box exercise on the endo's part. S/he probably will never see you again, as in my experience I never saw the same person more than once or twice, as they were all on rotation, just doing 6-12 months stints in endocrinology as part of their medical training.

Quave
Quave in reply to pennyannie

Will do - thank you

pennyannie
pennyannie in reply to Quave

Take a breath - you have had a lot of information and advice to process - but guess that's why you came on here in the first place, as you felt unsure of your next step and in all honesty, you don't need to take any steps you are not totally happy with.

here it is;

rcpe.ac.uk/sites/default/fi...

A Counterblaste To Guidelines by Prof Toft, (who was i believe, Her Majesty the Queen's Doctor when she was in Scotland , so that's good enuf for me)

Show off !!!!

I'm so glad you're here pennyannie , mostly cos you're lovely and helpful and kind ,but also because it's reassuring to know there's at least one person on the planet that's less competent than me on a 'puter...... (i haven't got anything else to show off about. I don't know how to open a file...... or put anything in it....... so i have a list of bookmarks that's about 4000 items long, and therefore useless :)

I'm laughing now - thank you - yes, I've also no idea about these virtual bookmarks, mine is real and I can hold it. Though I have to say, I'm still really hugging my nearest and dearest otherwise, living alone, as I do, I couldn't bare to see them and get it virtually - but I think they are in my real bubble though I can't see it !!!!!

My 'bubbles' are getting very confusing, my daughter lives in a 'flat' upstairs , but she has to go through my front door to get there and i still have to go in her car so she can drive to work 'cos her driving test was postponed, and my son lives in a house on the other side of the alley , but it hasn't got a kitchen , so he uses mine.... Umm.

And his cat is taking no notice at all, and still thinks all the beds in everyone's house belong to him.

I've had to settle for wiping the kettle and door handles with a bleachy dishcloth and not licking my fingers anymore.

It must be tough living on your own at the moment, i sometimes wish i did , but i'm sure they keep me sane(ish)

Quave
Quave in reply to tattybogle

Thanks for this!

Just to stress as pennyannie has said you have THREE treatment options. RAI, Thyroidectomy and drug treatment. All have pros and cons . The RAI and TT are irreversible but there is no rush to stop your Carbimazole while you consider your options. Docs see the first two as easier.... for them !

You might do better on a block and replace regime where some levothyroxine is added in to stop you going hypo which can worsen your eyes. I have been on this for 5 years.

Quave
Quave in reply to asiatic

Thank you both so much for getting back to me.

I have just got 2 of Elaine Moore’s books and have started reading. I read somewhere before that you shouldn’t have RAI with active TED but does the same apply to thyroidectomy?

Is 18 months the usual timescale the NHS allocate to taking carbimazole and do you think many people stay on it longer?

Quave
Quave in reply to asiatic

Thank you asiatic - I’ll remember that when I talk to the endocrinologist!

A lot of people can stay on Carbimazole for years and as long as they have regular blood tests they are ok. One of the first things my NHS Endocrinologist said to me was I could have my thyroid removed or RAI. I am glad I ignored his advice because here I am 10 years later still with my thyroid which is a multinodular goiter. I have seen how some people struggle afterwards because the NHS don't always give people without a thyroid the right treatment. Some people can go into remission with Graves' and have many years with taking nothing. At the moment I am taking nothing but I know this won't last forever. I find that trying to avoid stressful situations helps me which is hard at the moment. I do suffer with a bad temper which I never really had before I became ill so I usually try to walk away before I say something I might regret. I also try to avoid drinking too much coffee and alcohol which can affect me a lot. Don't let your doctor put you under pressure to have a procedure you don't want. Doctors are here to advise us and we can listen to their advice but it is up to us if we decide to take it.

Quave
Quave in reply to Lora7again

Too true - thank you!

TED although assosciated with Graves runs it's own independent course. From my own experience I know going hypo worsens it which begs the question what would happen if I had a TT which would probably give a period of hypo ? I am sceptical when I read TT would help my TED.

18 months is the usual time on meds. chosen with little scientific backup. My endo said he would not take me off meds while my TRab was still high as I would probably relapse which sounded reasonable. We worked together to find the LOWEST EFFECTIVE DOSE of Block and Replace At the moment 5mg Carbimazole and 50mcg. Levothyroxine which I would happily stay on longterm if necessary. Things do change with Graves and I think I may be heading towards remission. I have read that the longer you stay on meds the more chance you don't relapse. We are all unique and I am lucky I respond well to meds as not all do.

I

Quave
Quave in reply to asiatic

Forgive my ignorance here - is the TRab the antibody count? How often should that be tested?

asiatic
asiatic in reply to Quave

Yes TRab is a measure of Stimulating and Blocking Antibodies. TSI is a measure of stimulating antibodies. Both or either are used to diagnose Graves so you should have had this measured. TRab is the one most commonly used. It is also used to check if your antibodies are decreasing and you are going into remission which is unlikely if level is still high. I have had it done three times in the last 5 years

Hi Quave, don't despair. It took me a long time to get to 5 mg. About 2 years. First time I tried to take 5mg after a year, my levels overshot and I had to move back to 7.5 mg. I have titrated down gradually. You can take 6.25 mg for example (alternate 5 mg and 7.5 mg). I'm still taking carbimazole nowadays on 5 mg per week. At some point I will try to stop completely.

Hi Elderflower - thank you so much for that. It’s too easy to feel a failure at the moment with all of this ,give up hope and give in to what the endocrinologist is telling me to do!!

It's natural to feel worried and pressured when they start talking about definitive treatments. I must have had that conversation at least 3 times in the past 4 years. You must not feel pressured. It's relatively early days for you and you may still go into remission. If you have mild TED, you should definitely not have RAI as it may make it worse.

The NICE guidelines (see below) say that it can take 12-18 months for the titration approach to antithyroid treatment (where the dose is reduced over time) to take full effect, so I would push for this before making any decisions, and possibly for 18 months duration after your relapse. This will buy you a bit more time to research and consider your options. Do you know what the ranges were for your thyroid tests, and have you had antibody tests (specifically TRAb or TSI).

Sadly, if your Gravesdoesn’t go into remission after this time, there isn’t really a good option or a full cure, it’s a matter of picking which of the three options would work best for you.

If you refuse RAI or thyroidectomy, they will have to continue to prescribe carbimazole, which is accepted as a valid long-term option within the NICE guidelines. However, it’s one thing to be on 5mg/day of carbimazole for the foreseeable future, with thyroid levels that remain stable, and another to need a higher dose of carbimazole, and still have thyroid levels shooting up at regular intervals. The risks of the worst side-effects of carbimazole, while rare, never disappear entirely, nor would the risk of thyroid storm if your thyroid levels cannot consistently be maintained within range.

With RAI and thyroidectomy, you would almost certainly become hypo and need thyroid replacement hormones for the rest of your life, which may seem like swapping one daily tablet for another. However, levothyroxine is a synthetic version of a hormone your body would be making itself, so quite different from a medication like carbimazole.

RAI may not be the best option anyway, given that you have TED, and may not fit your lifestyle if you have young kids (or work with them), or are planning pregnancy. There are people on this forum who have had a very bad time after having had RAI, also others who are happy with their decision to go ahead with this treatment.. Bear in mind that if people had RAI some time ago and have been happy with both the RAI itself and their treatment since, they are unlikely to seek out forums such as this.

Thyroidectomy is obviously surgery, so carries all the usual risks of that. It would be important to choose a surgeon who regularly performs this procedure, as there could also be temporary or permanent damage to the parathyroids or vocal chords.

That said, the biggest risk of RAI or TT may be the treatment (or lack of adequate treatment) afterwards. If you do consider either of these treatments, it would be worth discussing with your consultant how they will help you if you endup feeling worse after treatment than before.

People here can tell you about their own experience, but they can’t tell you what would be the best option for you.

cks.nice.org.uk/topics/hype...

Quave
Quave in reply to Valarian

Thank you Valarian - that all makes sense.

Quave
Quave in reply to Valarian

Apologies- just re-read your post & found the questions! TRAb was only tested a year ago when I was first diagnosed with Graves - then it was 6.6. I’m pretty sure it hasn’t been tested since.

Re range of thyroid levels - I put the headline ones on my first post. Would it be helpful to list all of them?

Valarian
Valarian in reply to Quave

To make sense of the test results, you need the ranges - typically in brackets after the test result. They differ from one lab to the next.

Hi quaver I to have graves and Ted's I'm on 5mg of camizone the endo at the Ted's clinic in Leeds has said they will keep me on this dose because of covid 19 and he will never do RAI on any one with Ted's ask her about block and replace

I’m in Bradford and haven’t heard of the Leeds TED clinic. Please tell me more.

It is at St James Hospital every Friday you see two eye or three different eye doctors and profeser adjan he is an endo I've had ct scans iv steroids if you need prisms they'll do them for you now I'm out of the active stage I'm on the waiting list for stabismus surgery time 2 then upper eye lid surgery you can ask your gp to refer you to them it taken 18 months to get to this stage

Thanks for the info. I will speak to my endo to see if we can set up a referral.

If you google St James Hospital then on there site look up thyroid eye disease clinic it gives you information on what they do I don't live in Leeds I'm from Huddersfield have you been to any doctor for your Ted's

Quave
Quave in reply to Oldbar

Will do- thanks

Oh my! My heart sinks when I read posts like yours. I was diagnosed with Graves Disease in 2015. I was being treated initially by an endo who was quite good (although occasionally we disagreed - we where working together to hit the right doses of carbimozole.) I was also initially taking propranolol. Another endo joined the hospital team and I found I was sometimes seeing him instead of my first endo and I can’t tell you the madness that ensued. New endo was obsessed with reducing my carbimozole rapidly, kept spouting about NHS guidelines and saying I could only be on it for 18 months max etc and he spent half of every consultation trying to push a thyroidectomy - as he clearly thought this was a fabulous option and would solve all issues (he literally said this!!) Despite my bringing him in evidence both of studies done, info from various thyroid associations and anecdotal evidence from other thyroid disease sufferers (which I have no doubt he binned after I left room) he remained adamant that removal was best thing. I eventually had to tell him I felt he knew nothing about thyroid care and I refused to ever see him again (or words to that effect! 😂) I contacted first endo and she agreed to see me exclusively. I did not have RAI or thyroidectomy and five years later I no longer take propranolol but I am on 15mg and 20mg carb on alternative days. We are slowly trying to get to 15mg per day as a permanent dose. I am feeling well on this. For my TED, which started just after diagnosis when my hormones were out of control, I was referred to Moorfields Eye hospital and there I was given once weekly infusions of a steroid to reduce inflammation. This worked quite well and my eyes are much more settled and not inflamed anymore.

I honestly would say I wouldn’t recommend removing the thyroid if you have other options and there is no evidence that being on carbimozole (provided you are regularly monitored) for long periods is necessarily detrimental to you.

They are trying hard to force me into RAI. I have TED for Christ sake.

I just don’t understand why so many endos push patients towards removal or killing the thyroid. They seem to see it as the solution when in fact it’s anything but. Manually taking over the function of the thyroid with hormone replacement is tricky to say the least and finding the correct dosages (when needs change all the time) is even trickier. I would always rather be hyper than hypo permanently.

Quave
Quave in reply to Millea

Thank you for sharing all your information! Because of Covid I’ve only had one face to face appointment with the Endo & on 2 subsequent Telephone conversations it didn’t sound like she remembered my case too well. My TED was diagnosed by Phone pictures during lockdown but thankfully is mild (at the moment) and manageable with shed loads of eye ointments!

pennyannie
pennyannie in reply to Quave

Please make sure all your lotions, potions and drops are " preservative free " :

I think a referral to a TED clinic is an excellent suggestion as is the monitoring of your antibodies as these are paramount to your recovery, and it does seem that these TED clinics are well up with current thinking.

Quave
Quave in reply to pennyannie

Thank you - yes, they are preservative free. Apparently I’m on the waiting list for the eye clinic!

Hi Quave, if you haven't already read it , you may find this post an interesting read. Its from someone who's been on Carbimazole for many years and is well.

healthunlocked.com/thyroidu...

Quave
Quave in reply to tattybogle

Thank you!

Push to stay on treatment !!! If you have TED you should not be having RAI. If they remove the thyroid , it doesn’t make the Trab antibodies go away. You’ll still feel crap AND now you’re hypothyroid instead. They honestly push these options so we are taken off their books and discharged back to primary care. I have Graves btw. Please sign the petition to add hyperthyroidism to the medical exemption list so we can get our prescriptions for free

Got it - thanks - and will do!

petition.parliament.uk/peti...

I was diagnosed with Graves 8 years ago and I was very ill with it. I stuck to my guns and mine once under control I have managed to not have carbimazole for the last 6 years. I’m glad I didn’t give in to their advice ie having my thyroid removed or RAI. I now have blood tests twice a year. The trouble is most endos are only interested in diabetes and with Graves they like a quick fix which isn’t always the right thing for us

Fully agree. The waiting rooms are full of diabetes posters.

This has all been a real eye opener for me.

2 more questions please - whenever anyone has time.

Which is the best place online for private blood tests for vitamin D, folate etc? My GP wasn’t playing ball with me even when I said I would pay for them - and I’ve heard one or two agencies have become less reliable with Covid.

What are your thoughts on the use of L-carnitine? Can you get a blood test for your level?

Never bothered with doing a test for l-carnitine, but I do take a daily acetyl-l-carnitine supplement. I would also recommend you look into a selenium supplement for your mild TED if you are not taking it already.

Ok thanks. Already taking selenium - wondered if carnitine could make a difference.

pennyannie
pennyannie in reply to Quave

Good morning to you :

There are private blood test companies listed on the Thyroid uk website :

Post the results and ranges back on here, in a new post, and you will be advised if anything looks amiss : we generally suggest a TSH, T3 T4 plus antibodies and ferritin, folate, B12 and vitamin D and is packaged a basic thyroid bundle containing about 11 key factors.

I have read that selenium is suggested for the Graves ophthalmology and have read of L-carnitine but never used it. You could start a post with just L - carnitine as the heading - and see what comes back from forum members as this question is far down your post, not everybody reads through everything to pick up the odd hidden questions.

Quave
Quave in reply to pennyannie

Good morning!

That’s great - thanks for all your tips and advice, I will investigate.

I have Graves’ disease I take 10 mg of carbimazole a day and seems to keep it under control! I think the doctors go for RAI or an operation because it takes the problem away from them and you end under the GP which I found very unhelpful! My advice would be to stick with the carbimazole as it can take up to 2 years!

Quave
Quave in reply to Th-cat

Yes - that makes sense - thank you!

My sister was diagnosed Hyper 15yrs ago. I was diagnosed Hypo 13yrs ago. It took 11yrs for me to understand my condition and get optimal treatment. My sister doesn’t fully understand her condition but as a medical professional herself she understood enough to refuse RAI and surgery. She stayed with block and replace but now presents as Hypo although because her bloods (TSH and FT4 only) were in range so she hasn’t pursued more answers (she’s also a typical medical professional who doesn’t take her latest condition seriously and ‘copes’)

Did your consultant tell you you were ‘hypothyroid’ when your results were in range? Did you feel hypo?

TSH 0.98

FT4 15.8

T3 4.6

Depending on the ranges with those results I might feel hypo and would need them higher in range but I’m thinking they might have felt good after having such high blood results?

pennyannie
pennyannie in reply to NWA6

Hey there

I think part of the overall problem is that when you become hypothyroid whilst still on the AT drugs your become even more reliant on the " medic professional " as your own mental processes have not been restored but down regulated.

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