Is my only answer RAI or a thyroidectomy?

[HannahStevenson]

Hello everyone.

I am a 32 year old female and have been on Carbimazole for the last 9 months for Graves’ disease. For the last 5 months or so I have been struggling to get the thyroid under control and have had my dosage yo-yo from 20mg to 15 to 30 to 20 to 40 to 20...!

My latest bloods showed my Trab level (which hadn’t been tested since September when it was 15.45) is now off the chart at 40+.

Whilst my thyroid hormone levels look much better, on paper-

T3 4.4 (3.1-6.8 pmol/L)

T4 5.3 (10-23 pmol/L)

TSH 0.23

The consultant has said that I am seriously thyrotoxic and doesn’t believe that the Carbimazole will ultimately work for me.

I asked about PTU (as I am also very keen to start a family when I can). He said that PTU is not as strong as Carbimazole so is unlikely to help and also there were higher risks with liver disease with this drug...

He is now pushing for the only remaining options; RAI or a thyroidectomy.

I feel pretty upset and helpless. I have really tried to do everything right from taking all the recommended supplements (selenium, Mg, Zinc, vit D, L-carnitine...) to major dietary changes (no gluten, cow dairy, sugar, alcohol, limiting fish...)

I have even started seeing a cranial osteopath who has given me a remedy called Burdock Intrinsic.

I’ve taken chunks of time off work to help limit stress levels.

Clearly none of it is working...

I don’t know what to do anymore.

I have mild TED, goitre, muscle pain in one leg, feeling the cold more, mild anxiety, heart rate up (and down depending on where my levels are at)...

I really don’t want to take invasive action - especially as it leaves me in the very unsatisfactory position of ultimately ending up becoming hypothyroid and all that that then entails...?!!

Any help, advice, comments much appreciated x

[Lalatoot]

RAI is not recommended when you have TED as RAI treatment can result in a worsening of the TED. A thyroidectomy is the recommended procedure. If you do a google search you will find evidence to back this up.

We believe that the study by Bartalena et al3 has important implications for clinical practice. Firstly, since radioiodine treatment carries a substantial risk of exacerbating pre-existing thyroid eye disease it should be avoided as far as possible in patients with active or severe ophthalmopathy, in whom medical therapy with a thionamide drug such as carbimazole is preferable. Radioiodine may be used in patients with mild eye disease but adjuvant corticosteroids should be prescribed.

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

[HannahStevenson in reply to Lalatoot]

Thanks Lalatoot! This is very good to know. I have mild signs of TED with puffiness, headachey behind eyes, sometimes strained feeling that is often exacerbated with screens and driving. I have lubricant drops to help with dryness.. so RAI does sound very risky for me then. Thanks again

[Buddy195 Administrator in reply to HannahStevenson]

It may be worth getting a second opinion; consultants can jump to conclusions & may get things wrong .... I was diagnosed Graves but am actually Hashimotos with TED.

Just double checking you are taking selenium; really important in early stages of TED. TEDct are a really helpful organisation & have a new Facebook group & hold informative zoom meets.Best wishes to you Hannah

[Valarian in reply to Buddy195]

She says Graves’ was confirmed with TRAb test

[SlowDragon Administrator]

T3 4.4 (3.1-6.8 pmol/L)

T4 5.3 (10-23 pmol/L)

TSH 0.23

These results suggest you are hypothyroid

Ft4 is below range

TSH is extremely unreliable with Graves’ disease

Suggest you read ElaineMoor website- specifically for Graves patients

[Jazzw in reply to SlowDragon]

Must admit, I read the words “consultant thinks I’m severely thyrotoxic” and thought “Whhhattt?!”

Thyrotoxic would mean you have too much thyroid hormone sloshing about, Hannah. You have the opposite problem at the moment—not enough. Your thyroid’s being suppressed too much—you’re on too big a dosage of carbimazole

Does your consultant actually have qualifications in medicine...?

[HannahStevenson in reply to Jazzw]

Oh god I know. It’s a worry isn’t it?!

I’ve been so up and down...but yes the last 2 weeks have show I am in under active territory. Yet I’m still advised to stick with 20mg. Because I’m not really responding well with Carbimazole I think if they did lower me to 10 or even 15mg my levels would shoot up again. My body does seem pretty sensitive when they try to lower the dose...

[Jazzw in reply to HannahStevenson]

I don’t know... (that’s a “thinking” I don’t know... ).

I can’t see that they gave 30mg carbimazole a long enough go??

40mg is clearly too much. 20mg not enough. So that took me back to 30...

[HannahStevenson in reply to Jazzw]

Yes I'm with you Jazzw... I don't think with hindsight I was on the right dosages and now my system is confused about what to be on...

[HannahStevenson in reply to SlowDragon]

Thanks SlowDragon. 6 weeks ago I was

T3 14.8 (3.1-6.8)

T4 37.7 (10-23)

TSH fully suppressed

So the Endo doc put me on 40mg carb for 4 weeks (was previously on 20mg) and then been on 20mg again for the last few weeks...

[Valarian in reply to SlowDragon]

But she is taking Carbimazole. It seems as if her dose has been up and down like a yo-yo, but with high antibody levels, it will be difficult to keep thyroid levels under control.

[Hennerton]

Hello Hannah, I had galloping Graves and was on carbimazole. I was hopelessly up and down and could not get a level on which I felt well. With hindsight I think I should have been taking lots of supplements to support my ravaged body but nobody suggested anything. Neither was PTU mentioned - just thyroidectomy and in great ignorance of living without a thyroid I had a thyroidectomy. My biggest regret ever is this, I do know someone who has been on PTU for a decade and only now is it affecting her liver. Meanwhile she has had three healthy children.

If I were you I would definitely ask to try it and at least then you will have tried everything possible. Who knows? It may be the answer to stable levels. Doctors do not care about your future. They just want you off their list. You have nothing to lose by trying it. If it fails then you can think again but ensure your iron levels are good first, plus magnesium, Vit D B12, folate and probably more that others will recommend. Good luck and I hope it works.

[HannahStevenson in reply to Hennerton]

Oh thank you Hennerton for your reply. I’m so sorry to hear that you regret your thyroidectomy. I think your advice is great and will certainly look into trying the PTU. Amazing to hear the story about your friend too having 3 children on it! All the best to you x

[pennyannie]

Hey there again Hannah :

Well your results, on paper now show you very hypothyroid and you must be feeling confused with all these conflicting symptoms.

Has there been any suggestion of block and replace ?

This is when some T4 Levothyroxine is taken to offset the AT drug blocking your own thyroid hormone production and thereby giving you back a controlled level of T4 to " cushion " you and not let your T3 and T4 fall too low giving your symptoms of hypothyroidism.

Since you have mild TED - RAI is off the table and I'm concerned it's even being suggested.

It's only around 9 months from when you were first diagnosed and generally the NHS allocate a 15-18 month window for treatment with AT drugs and during this period all AT drugs should be considered as should all treatment options.

It does take a skilled and an experienced endocrinologist to monitor and adjust levels of AT drugs and it reads to me as though this specialist has decided the result long before time.

Have you been referred to a TED clinic or ophthalmology for your eyes ?

Your antibodies may well drop in a few months time, or even next year, and it should be possible to medicate you during this phase of the disease, as it is a phase and not permanent.

Is there an option to see a different endo who will work with you, try PTU, and try and not leave you on too much AT drug causing you very low and under range T3 and T4 numbers ?

[HannahStevenson in reply to pennyannie]

Hi Pennyannie. Thank you for replying as always x He didn’t mention block and replace at all.

I saw an eye specialist 2 months ago and they are following up with me again in another 2 months time. They just prescribed me drops as not severe enough to go down any other path..

I am currently trying to seek a private Endo appt for a much needed second opinion.

Agreed another 4 weeks on 20mg Carbimazole with my current levels can’t be the right thing....! X

[pennyannie in reply to HannahStevenson]

Yes, I think a second opinion a sensible first option.

Please ensure you keep your ferritin, folate, B12 and vitamin D up at optimal levels :

When either hyper or hypo with a metabolism that is too fast or too slow, as in your situation, there's a very good chance that despite how well you eat you will not be able to extract essential nutrients from your food and you must keep your core strength strong and solid throughout this treatment.

AT drugs have side effects, and the stronger you are, the better able you will be to work through this phase.

It is a mind field and totally get you too might feel like throwing in the towel, but not yet. It's too early so let's find someone who wants to work with you to keep your thyroid and not give up before all avenues have been explored.

[HannahStevenson in reply to pennyannie]

Thanks Pennyannie! I needed to read that xx

[tattybogle]

I think i remember reading on here a week or so ago about a study which showed that graves antibodies can still reduce in some people up to a few YEARS later, making a mockery of the idea that you only get allowed 18 months to see if you go into remission on Carbimazole /PTU before being pressured into loosing your thyroid for ever.I Can't remember if it was 4 /5 years.

Hopefully this reply will prompt somebody else to remember the discussion and link to it , as my eyes and brain have reached their limit of usefulness tonight. If no one comes to the rescue i'll have a look for it in the morning x

Like pennyannie , i think it's extremely concerning that they have even suggested Radio Active Iodine for someone with TED.

I'm afraid i've come to the conclusion it's promoted as the "preferred treatment" because of the "preferred economics" over the costs of surgery or ongoing monitoring of antithyroid drugs... i don't think it's got anything to do with it being the "preferred option for patient health outcomes"

[PurpleNails Administrator in reply to tattybogle]

Perhaps this post?

healthunlocked.com/thyroidu...

[tattybogle in reply to PurpleNails]

yes, that's the one . thankyou vey much x

[HannahStevenson in reply to tattybogle]

Thanks tattybogie I’ll take a read x

[HannahStevenson in reply to PurpleNails]

Thank you x

[NIKEGIRL]

Hi Hannah. Don’t give up. I am one year in with a Graves diagnosis and my blood is not 100%. I take PTU. I have had no side effects on this drug. I started this drug on 25 January. 200mg one month, then 10mg then 150mg and now back to 200mg. I go and do liver blood testing every week. So far so good. I can’t offer any more help than that. I am like you. I have mild TED. I was offered treatment in this order RAI with steroids first for the TED, surgery, carbimazole and PTU last. I chose the PTU. So far so good. Good luck. How I got the PTU is by not taking the carbimazole for 6 months due to the side effects. No one was listening to me and my blood went in a terrible place. Only when T4 was over 100 and T3 at 49 did I get the drug change. Sad that it took that.

[HannahStevenson in reply to NIKEGIRL]

Thanks Nikegirl. Really good to read your experience. What a battle this is! X

[NIKEGIRL in reply to HannahStevenson]

Hang on in there.

[humanbean]

I'm slightly confused about your results sheet. When you give a dose and a set of results, is the dose what you've been on for a month before the test results were produced, or was the dose what you were put on as a result of the test results.

For example, on the 2-Dec you were on 5mg of Carbimazole and your test results show that your T3 was 16.4.

Was your 5mg dose prescribed as a result of your T3 being 16.4, or was your 5mg dose what you'd already been prescribed in the weeks before the test?

[HannahStevenson in reply to humanbean]

Hi Humanbean. Sorry yes that is confusing. The dose is what I’ve been on prior to the results that you see. So on the 2-Dec when I had my blood taken I had been on 5mg for the previous 6 weeks.

[helvella]

I have just posted an abstract of a paper which appears to support longer term use of anti-thyroid medicines.

healthunlocked.com/thyroidu...

Use of block-and-replace was introduced very largely because in some patients it is difficult to achieve an exact anti-thyroid medicine dosage which works.

However, I'd also point out that your carbimazole dosing is not entirely clear.

Carbimazole is a fast-acting medicine which only lasts a few hours in our bodies. If you were on a dose of 40 milligrams, and took it in one dose, by the time you reached your next dose, your thyroid could well have restarted making thyroid hormone.

In early treatment especially, divided doses, two or three a day, can make a substantial difference. Dosing like that can keep thyroid hormone production down for the full 24 hours a day.

Many find they can reduce to one dose a day in time especially if they are doing well as they reduce their dose.

[Cavapoochonowner in reply to helvella]

Hello, I too am on block and replace after titration was unsuccessful.I find your advice about splitting doses of carbimazole really interesting.I want to know as much as possible about my condition and any possible treatments in case they try to push me towards a thyroidectomy.It hasn't come to that so far but I am aware that on the NHS they really only give you a certain amount of time for treatments to work.I was going to ask about titration again for me if they try to take me off block and replace again.The information on this site is invaluable.Thankyou.

[pennyannie in reply to Cavapoochonowner]

Hey there ;

Just another thought to put into your thinking cap :

Please check out on the Thyroid uk website:

Professor A Toft's 2017 article published during his retirement year from the NHS :

Thyroid Hormone Replacement - A Counterblast To Guidelines - in which he states ;-

" 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 " .

This is just a snippet from page 3 but the whole article is so relevant to all of us on this forum.

This man's credentials go before him, and I think it's just as interesting as to what he hasn't actually said with regards to how Graves disease is seen and treated by the NHS.

Sorry - my cut and paste needs scissors and glue - please don't try and help or explain - it's just my Achilles' Heel but I will learn how to, one day !!!

[Cavapoochonowner in reply to pennyannie]

I will certainly check that out.Knowledge is certainly power regarding treatment for the thyroid.

[Valarian in reply to Cavapoochonowner]

I was told to split my initial dose of carbimazole (40 mg/day) in two, but the endo emphasised that taking the full dose was more important than splitting it. When Graves’ is at it’s worst it’s easy to collapse into deep sleep and miss the second dose. PTU however, has an even shorter half life, so timing is more critical.

[Cavapoochonowner in reply to Valarian]

Thankyou for the information.It is certainly difficult to keep track of tablets when you take a few different ones.Sometimes I have to think "Did I take my tablets" as you end up doing it without thinking.

[pennyannie in reply to helvella]

Thank you so much :

I just hope this article makes it's way into the decision making of the rules and guidelines currently held by medical establishment.

[Stourie in reply to pennyannie]

Maybe in 50 years time. Jo xx

[pennyannie in reply to Stourie]

I'm glad to see you are optimistic !!

Though speaking with Elaine Moore a couple of years ago she did say RAI was very slowly being phased out in the States, despite there being no change in guidelines, and nothing in writing, :

I've just become a very cynical, disappointed and disillusioned person.

I found no help with any of my symptoms post RAI :

If no one listens and records the side effects being suffered, and they don't " appear " within the allocated time frame, you're struck out and disqualified for raising the question and asking for help.

if it wasn't for my dentist and this amazing forum I don't quite know where I'd be now.

[HannahStevenson in reply to helvella]

Thanks Helvella. When I was taking 40mg, I was taking 20 in the am and 20 in the pm. Now just taking 20 in the am... Perhaps i should try 10mg -am and 10mg -pm. I shall take a read of that abstract. Thank you v much!

[pennyannie in reply to helvella]

Quave

[Cavapoochonowner]

Hello, I have graves disease and have been receiving treatment since 2018.First it was carbimazole only like you.Like you it yo-yod up and down.My T4 levels were too high then too low.I also have TED and my opthamologist said block and replace would be much better as once you are stabilised there are fewer fluctuations in thyroid levels.This is where you take a consistantly high dose of carbimazole, in my case 40 mg, then slowly add in thyroxine to get up to a good level.My level is 100mcg.Iwas on this for about 7 months then came off to see if I was in remission.My T4 levels rocketed in only 2 weeks and I am now back on it.The brilliant advice on this site suggests I wasn't on it long enough.They say 12 to 18 months.This may be a problem for you though as I don't believe you csn take carbimazole if you are trying for a baby.I think they prescribe something else.It is true also that you should not have RAI if you have TED as it can make it worse.I have decided that if I get to the end of the road with block and replace and they try to push me towards surgery I will ask for a second opinion.I believe you are entitled to do this without things being awkward.Many people on here say you have to take treatment slowly with graves to be successful.My problem at the beginning was hospital appointments too far apart and increasing /decreasing the carbimazole dose too sharply.I am even considering a private consultation if necessary and I am by no means well off.I just want to make sure I have covered all my bases because once you thyroid is gone it's gone.Hope some of this may help.I realise I'm at a different stage of my life to you(55) so your treatment options may be different.Many people on this site have alot of expertise so you arein the right place .Best wishes to you.

[HannahStevenson in reply to Cavapoochonowner]

Thank you Cavapoochonowner. I so relate to what you're saying about hospital appts being too far apart and dosage changes too extreme. I'm sure that's partly the reason for the yo-yoing. I'm also annoyed that my Trab level wasn't checked for 7 months. It's really interesting to hear from you and others re the block and replace.

I am definitely inspired to seek a second opinion.

All the best to you too x

[helvella in reply to HannahStevenson]

And I entirely endorse that.

Patients should be handed pre-filled/authorised blood test forms (or whatever technical equivalent exists for online systems) so they can go and get a test when they feel something has changed.

It is particularly ludicrous when the patient sees a doctor (whether GP or specialist) and about all that happens is they get told to get a test and come back for another appointment.

[Valarian in reply to helvella]

Yes, i’ve been given a new blood test form at every endo appointment, sometimes more than one depending on the gap between appointments. I’ve only needed to use the envelopes early once (and was right, my dose needed changing) but i was very glad to have the form available, so no arguments required.) My prescription was changed straightaway and i was sent a new form to use a few weeks later, just before my next appointment was due. It can be managed efficiently but often isnt.

[Cavapoochonowner in reply to HannahStevenson]

I'm glad I've been of some help.It's so good to be able to talk to others in the same situation isn't it.I have only had my antibodies tested at the beginning when I was first diagnosed.I did ask my endo if they could be checked again to see if there was any improvement but he said it wasn't necessary as I would still have them.I now know it is an indication as to how active graves still is so next time I'll try to be firmer.He's a nice man but I know he's bound by rules and regulations.Also I think you're at your weakest when ill and it's difficult to ask those questions and stick to your guns.I should perhaps take someone with me to my next appointment( if covid allows)for moral support.Wishing you luck for the future.

[HannahStevenson in reply to Cavapoochonowner]

It is such a comfort to read other people's stories and share info. Thank goodness for this forum. I took my husband along with me yesterday - reason = I am dyslexic and he needed to make notes for me! Staff seemed satisfied that this qualified! It's so important to have someone with you to listen and ask questions too! And most importantly for moral support and be there if it doesn't quite go how you'd like it to...as often it doesn't!

[Valarian in reply to Cavapoochonowner]

They wont keep repeating TRAb on the NHS, the time to really push for a repeat is when they are thinking of stopping carbimazole. I think it can be done privately but it may be expensive and may also require a full blood draw.

[HannahStevenson in reply to Valarian]

Good to know

[Hidden]

Hi. I had a unique experience. My thyroid got better with the help of a naturopathic doctor and supplements. Maybe that could help you?

[HannahStevenson in reply to Hidden]

Hi Goodhairday. That would be the dream!!! A holistic natural approach would be ideal. Any advice starting out with this? I've already been on a therapeutic diet with a nutritionist for 6 months and taking various supplements... but not really noticing any success

[Hidden in reply to HannahStevenson]

I messaged you.