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Autoimmune disease

Graves disease back again…what next?

45 replies

LoveItOrListIt · 27/04/2022 21:36

I’ve had Graves’ disease twice in the past, both times treated successfully with carbimazole. I came off carbimazole just over a year ago and felt great. Blood tests at 3 and 6 months were both within limits. I had a horribly stressful time in autumn and winter which I think was the trigger for my latest bout. I’ve been feeling edgy and am struggling with my running so I took a medichecks kit and I’m through the floor in TSH with accompanying high t3 :(
I was told it would likely reoccur so not shocked but the last time, the consultant said next step was radioactive iodine or surgery, neither of which are appealing. I’m not sure why I just can’t take carbimazole constantly and why being hypo on thyroxine seems to be preferable to being hyper on carbimazole?
has anyone experienced radioactive iodine or removal surgery or indeed on a permanent maintenance dose of carbimazole? If you had the treatment are you now hypo and is that easier to deal with? Please share your experience

OP posts:
ACatCalledLola · 27/04/2022 21:44

I’m interested in any responses because I also have Graves Disease and I’ve relapsed once so my consultant has been talking about either surgery or radioactive iodine. I’ve refused so far. I’m on a very low dose of carbimazole (5mg) which I’m happy with. From what I understand, the thyroid is the victim. Removing or destroying the thyroid doesn’t make it go away so I’m very reluctant to go for such a permanent solution. I think after covid there will be a lot more research into autoimmune disease so I’m holding out for a better solution. In the meantime I’ll continue with the carbimazole. I’ve been told that there aren’t any long term implications, the only issue is that the graves can break through the drugs eventually. I’m willing to sit it out and deal with that if and when it does actually happen.

LoveItOrListIt · 28/04/2022 06:31

I’ve never heard the thyroid being described as the “ “victim” before but it is spot on and has really helped my thinking. The iodine and surgery options are treating the symptoms and not the root cause (I guess same with carbimazole but at least it is not permanently damaging a vital organ!).

OP posts:
Ilikecheeseontoast · 01/05/2022 21:20

I’m also interested in the answer as I also have Graves’ disease and am on a low dose of carbimazole (5mg) at the moment. Am terrified of relapsing as it was just such a horrible scary episode the first time round. I feel like I’m a different person to who I was before graves. It’s awful. Sending you strength and get well wishes xx

Bellybootcut · 01/05/2022 21:29

I had two bouts of Graves and took Carbz. 3rd go I was told it wasn't safe to continue with carbz. Can't remember why. I had the radio iodine therapy which was fine in itself. Had to travel to Christie's in Manchester as not many hospitals do it. It did mean I now have to be permanently on Levothyroxine but that's not a problem really. A much safer option.

KatharinaRosalie · 01/05/2022 21:33

I read all the studies I could get my hands on and the relapse rate is just so high I didn't want to wait to see when it happens, not if. Had surgery more than 10 years ago and haven't had any issues.

LoveItOrListIt · 02/05/2022 06:18

Thanks for the replies…I’m just not clear on why thyroxine is better than carbimazole?

@Bellybootcut, did the iodine treatment completely kill off your thyroid or just partially? I’m more inclined to go for this option (if not allowed to stay on carbimazole) because it feels less invasive that surgery and removal.

@KatharinaRosalie How did you find the surgery? Do you also take daily thyroxine? Are there any other complications?

My mother had her thyroid removed (she had thyroid cancer sadly) and had complications in surgery which ultimately killed her a couple of years later, so I’m not keen to start down that path although I know it is unlikely to happen the same for me.

OP posts:
INeedtobealone · 02/05/2022 06:37

I have Graves' disease and had my thyroid removed with surgery after a third relapse after I gave birth. Couldn't have the radioactive treatment as I had a small baby.

Op was fine, did have it done privately but went very well with easy recovery and I have small scar which I don't think you'd notice if you didn't know I'd had my thyroid out. Op was in 2017, aged 30, after first being diagnosed in 2011. It did take a while to get my thyroxine levels right, but of trial and error but been on a stable dose know for the last 3 years.

I was told it is safer to be on thyroxine for life, it's a hormone, than carbimozole which can cause long term side effects, I can't remember for sure what they were.

KatharinaRosalie · 02/05/2022 06:42

I'm not a medical expert but carbimazole is not recommended to be taken for more than 18 months, while levothyroxine is just a hormone replacement and can be taken lifelong. In my case, we were also TTC and carbimazole is not recommended during that or pregnancy. Plus, recurrence of Graves during pregnancy would not have been great.

I was quite tired for a couple of weeks after surgery as my doctor wanted me to wait for my body to clear out the natural hormones before I started with thyroxine, not sure if this is still the standard. Otherwise haven't had any issues except when they forgot to lower my dose after pregnancy and I went hyper, but that was easy to adjust. After pregnancies my dose has been stable and I don't have any side effects.

TooManyPJs · 04/05/2022 22:47

From the NHS website:

"Yes, it's safe to take carbimazole for a long time, even many years.
It's important to have regular blood tests during treatment, to make sure your dose is not too high or too low. Your doctor will make sure you are on the lowest dose that works for you.
Your doctor will be able to explain the risks and benefits of taking carbimazole, compared with the risks of not having treatment for your overactive thyroid."

www.nhs.uk/medicines/carbimazole/

TooManyPJs · 04/05/2022 23:32

Don't be bullied into RAI or surgery. Both are a hammer to crack a nut imo and as you say, damaging or removing a perfectly healthy organ!

I think my GD has literally just reoccurred tonight 😩😩😩😩 Like you had really really stressful period last week (bloody neighbour issues!) and had a stress urticaria reaction and was dreading that it would cause a GD flare up. Starting having racing heart this evening....😭

I have a rare form of GD where I produce both blocking and stimulating antibodies (but no hashis). So I fluctuate from over to underactive. I've had two overactive episodes followed by months and years of titration. I have literally just been feeling well having started a T4/T3 combo about 2/3 months ago. That's taken 2 years since my last period of overactivity. So so frustrating. Dreading another long period of being underactive.

Anyhow I know my endo will also be pushing RSI or surgery now. I don't want either.

RAI I definitely don't want. It's been shown to increase thyroid antibodies for about a year after treatment and increase the risk of worsening or developing thyroid eye disease.

I am also nervous of a thyroidectomy. It's surgery so of course carries risks as does all surgery, plus there is a risk of damage to your parathyroid glands which could have very serious health consequences which could be difficult to manage. Plus obviously there is the scarring. All in all it's not something to be undertaken lightly.

There is at least one pharmaceutical company researching an immunotherapy for GD which could effectively be a cure. Phase 1 trials were completed a couple of years ago and were very successful but I believe (I am guessing here!) that progress has been delayed by covid plus the company has now been bought out by another one but they appear to be committed at the moment to be continuing the research. I expect it's a few years out yet though and of course may come to nothing. I believe there is other research going on into possibly curative therapies but I've been unable to find the details.

There is also the very real risk of being hypothyroid and not being adequately treated for it and feeling very unwell for the rest of your life. I had this problem and have had to go private and am on my second private endo before I found someone who would treat me adequately so that I didn't feel unwell. Not everyone has that luxury and if you are at the mercy of NHS endos or GPs it really is pot luck.

I really want to try to hold out I think (although the lure of not having to worry about a GD flare is very tempting). My hyper phases seem to peter out quite quickly in their own (both times it was only a few months - I had carbi with first one but I was on and off it within weeks as I rapidly went hypo so I think that one petered out on its own too). So I think I'm going to try to supplement selenium (it's been shown to help calm a flare, plus it helps reduce TED if that's an issue for you - 200mcg a day). Plus studies have found that acetyl L carnitine inhibits thyroid hormone entering cell nuclei. It therefore alleviates symptoms including having a beneficial effect on bone mineralisation.

I then want to get back up to my current T3/T4 dose as quickly as possible.

Just need to persuade my endo that this is a course of action he can support!

TooManyPJs · 05/05/2022 00:11

NB you can overdo selenium, so keep an eye on your levels if you do supplement for a long period.

I

LoveItOrListIt · 05/05/2022 05:31

@TooManyPJs thank you! I think I will push to continue medication for now. It’s interesting it seems to come on so quickly for you…I (so far, all three times) usually have a mega stressful period and then 6 months later, get the palpitations and hyper-caffeinated feelings. I almost knew it was coming this time because I had such a terrible time in October-December and I said to my husband that I’m sure this will ring my graves back on….and hey presto, here it is.
I guess the other option is just to avoid all stress for the rest of my life….that would be lovely 😊

OP posts:
ACatCalledLola · 05/05/2022 11:08

@TooManyPJs thanks for all of that. That’s really useful for me too as I’m also refusing thyroid removal or destruction so far. My consultant said there wasn’t an issue with carbimazole long term except that the graves may break through it eventually. I get the impression that an under active thyroid is cheaper and easier to treat and we can be handed back the the GP to manage so it’s the easy option for consultants to destroy the thyroid and hand us back over. Maybe I’m being cynical but they really do seem to push for this from the beginning. When my meds have been off I’ve noticed that I definitely feel better in myself when I’m slightly overactive rather than even slightly under active. The parameters of normal thyroid levels are going to be different for everyone and I don’t want to go under active and be stuck there because I’m being told my levels are fine.

TooManyPJs · 05/05/2022 11:26

ACatCalledLola · 05/05/2022 11:08

@TooManyPJs thanks for all of that. That’s really useful for me too as I’m also refusing thyroid removal or destruction so far. My consultant said there wasn’t an issue with carbimazole long term except that the graves may break through it eventually. I get the impression that an under active thyroid is cheaper and easier to treat and we can be handed back the the GP to manage so it’s the easy option for consultants to destroy the thyroid and hand us back over. Maybe I’m being cynical but they really do seem to push for this from the beginning. When my meds have been off I’ve noticed that I definitely feel better in myself when I’m slightly overactive rather than even slightly under active. The parameters of normal thyroid levels are going to be different for everyone and I don’t want to go under active and be stuck there because I’m being told my levels are fine.

Your fear is exactly the same as mine. I completely agree I much prefer being overactive than underactive - I start to feel rapidly very unwell if my FT4 and FT3 aren’t towards the top of their ranges. So it takes a long time of feeling increasingly ill before my bloods show I am underactive. Very frustrating. I just hope that if I am experiencing a Graves flare my endo is supportive in my suggested course of treatment AND also swiftly getting back up to my current level of T4/T3 as soon as my levels start to fall again.

I don’t think you are probably right to be cynical. I think many doctors think under activity is easy to treat. Then blame any problems when people are under medicated on “something else”, “patient non-compliance” or simply tell patients to go away as their bloods are “normal”, perhaps with a prescription for ADs!

They also seem to play down the risks of RAI and thyroidectomy especially as there is no going back if there are problems. That’s it, it’s done they can’t unnuke you or put your thyroid back!

And I really don’t understand why they are so against long term carbi as an option. There are lots of people who opt for this with no issues (obviously some people can’t tolerate it or it doesn’t work which is of course a different matter), and even the NHS website says it’s safe long term! As you say this incongruence makes you cynical!

if you can afford it and you are finding you are undertreated when hypo I know a great private GP and endo who will work with you to increase your meds. Both will prescribe T3 if needed. I can PM you. Let me know.


KatharinaRosalie · 05/05/2022 19:00

I completely agree I much prefer being overactive than underactive

this is of course individual, I would have agreed the 2 first times - full of energy, losing weight as well, what's not to like? But the third time I literally thought I was dying.

LoveItOrListIt · 06/05/2022 05:52

I get the impression that an under active thyroid is cheaper and easier to treat and we can be handed back the the GP to manage so it’s the easy option for consultants to destroy the thyroid and hand us back over

I don’t think you are being cynical at all…sadly, I think this is right.

OP posts:
BatshitCrazyWoman · 06/05/2022 16:59

I'm watching this thread with interest. I was diagnosed with GD last month. Doing ok on carbimazole - although I do have some nausea/light headedness. I certainly feel better than when I was hyper, when I felt awful and it really affected my mental state. I'm not overly thrilled at the thought of RAI or surgery.

Thatsajokeright · 06/05/2022 18:39

OP - it's cheaper to be on thyroxine for sure. Underactive Thyroid is also considered something a GP can deal with so they can get you off the books.

Don't forget to consider that you may not do well on thyroxine. I didn't. There are alternative hormone replacements you can take but not readily available on the NHS. My CCG has just stopped all T3 prescriptions and the NHS won't prescribe NDT (unless you're married to Michael Gove). So you may find yourself in the same situation I am; £100 a pop for a private consultant and £250 a quarter on a private prescription.

Push hard to stay on carbimazole if you still feel good on it. There's no reason why you can't.

Also recommend having a look at the thyroid forum on healthunlocked.com

Thatsajokeright · 06/05/2022 18:41

@BatshitCrazyWoman

Hypothyroidism can start with a hyper phase. Graves disease can be confirmed by checking for the associated antibodies. They are not the same as the hypo ones.

Worth checking to make sure you're on the correct meds.

FairyPolkadot · 06/05/2022 18:46

Exactly the same as you OP, my (wonderful) endocrinologist informed me I was a ‘perpetual relapser’ after a few years on Carbimozole and referred me for radioactive iodine treatment. I was 25 then. It’s not an exact science but it fixed the problem. I had 2 dc after that and was monitored throughout both pregnancies when my thyroid levels did alter a little. I’m 50 now and have taken to same dose of Levothyroxine every day since being discharged. I now just have an annual blood test to check my thyroid function levels. The radioactive iodine treatment changed my life (for the better!).

TooManyPJs · 06/05/2022 18:54

Thatsajokeright · 06/05/2022 18:39

OP - it's cheaper to be on thyroxine for sure. Underactive Thyroid is also considered something a GP can deal with so they can get you off the books.

Don't forget to consider that you may not do well on thyroxine. I didn't. There are alternative hormone replacements you can take but not readily available on the NHS. My CCG has just stopped all T3 prescriptions and the NHS won't prescribe NDT (unless you're married to Michael Gove). So you may find yourself in the same situation I am; £100 a pop for a private consultant and £250 a quarter on a private prescription.

Push hard to stay on carbimazole if you still feel good on it. There's no reason why you can't.

Also recommend having a look at the thyroid forum on healthunlocked.com

Why is your prescription costing you £250 a quarter?!? Is that for NDT?

I pay £125 for a follow up consultation. No fee for writing the prescription. And the T3 20mcg tablets cost 50p a tablet. I only take 10mcg a day so cut with a pill cutter.

Kevinthesnipe · 06/05/2022 18:54

I had a total thyroidectomy just over 5 years ago after a few relapses of my graves. It was explained to me that thyroxine is a natural substitute chemical so easier for the body to process. My levels have been up and down over the last 5 years with my thyroxine dosage being changed at least once a year so it hasn’t solved all issues for me.
However I am quick to spot my changes and find I don’t feel as poorly as I did with my graves. My scar is tiny and my pregnancy on thyroxine was a lot easier to manage than with graves on carbimazole.
I also used to be positive for antibodies possibly causing multiple miscarriages. Not been positive since removal.

KatharinaRosalie · 06/05/2022 19:33

Oh if the scar is a concern, you literally cannot see mine. I was careful with sunscreen and wore scarves when it was healing, and it's invisible.

Thatsajokeright · 06/05/2022 20:24

TooManyPJs · 06/05/2022 18:54

Why is your prescription costing you £250 a quarter?!? Is that for NDT?

I pay £125 for a follow up consultation. No fee for writing the prescription. And the T3 20mcg tablets cost 50p a tablet. I only take 10mcg a day so cut with a pill cutter.

Yeah, it's for NDT. I've been tempted to ask to switch to T3 but I'm doing well on NDT.

KatnissNeverseen · 06/05/2022 20:28

I would have a look at this site it is full of lots of information

www.elaine-moore.com/

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