Hi all, this post is regarding my daughter (18 yrs old). She had a relapse with her Graves condition. Just came out of a&e, she was admitted with high resting HR of 130. The t4 was so high, the computer only registered until 100 (ref range 11 - 22) and t3 was 39.4 (ref range 3 - 7). She was put on carbimazole 40mg once a day and propranolol 40mg 3 times per day.Waiting to see endocrinologist now to discuss next steps. I am worried they will suggest to take the gland out, since this is second time she is getting the condition (we finished the last treatment last year in October. The last blood test was on 16 Feb and her results were normal and TRab was negative, previously positive). Could I please get any advise if anyone has any ideas, especially around what options do we have now and is there anything we can do to help calm the thyroid. Many thanks.
Graves - relapse : Hi all, this post is regarding... - Thyroid UK
Graves - relapse
my daughter was diagnosed with Graves around 16 but treatment with Carbimazole /propranolol failed twice as did mine (diagnosed late 20s after many years being dismissed) I had radioiodine and apart from a wobble after RAI when arrogant young doc missed a blood test and another in my 70s have been on Thyroxine 40 odd years. My daughter (now 52) followed same pattern but weren’t really given the option of an operation. Not sure how many times they try using meds these days. Good luck but it’ll be up to your daughter now she’s 18 which treatment to go with. It’s a big decision and good she’s got your support.
Thank you for taking the time to respond catseyes235, much appreciated.
Welcome to forum
Sorry your daughter has had a relapse.
She has extremely high FT4 & FT3. 40mg Carbimazole is quite a high dose & can safely be taken in 1 daily dose, but it may be beneficial to split & take 2 or 3 doses. As consistently & spaced out as possible. This will reduced the gap between doses, longer gaps will allow hormone to start producing again.
Propranolol will help with symptoms, often it’s intended to be temporary. Reducing slowly when ready to stop. I still take low dose to prevent migraines (which were worsen when stopped abruptly by specialist)
How long was her previous length of treatment? Generally 18 months is suggested, and there is a great deal of research saying the longer the best / better outcome, but doctors often stop it as soon a levels look improved or rush it.
As this is a relapse they are likely to suggest Radioactove iodine treatment or surgery, they may imply definitive treatment is her only option but take they time to research all options & don’t be pushed into a decision.
I was informed my hyper nodule was to be treated with RAI but I didn’t agree & now take carbimazole long term.
Push for careful monitoring of thyroid function & carbimazole adjustment - at least 6 weekly at first. The aim is to get FT4 & FT3 into range, the TSH can linger behind & can be unreliable. Sometimes doctors just look at TSH & doing this can allow the FT4 & FT3 to drop too low. GP can arrange thyroid function, and waiting for specialist appointment to arrive & arrange further tests may take longer than this.
Testing folate ferritin B12 & vitamin D important as can be affected when thyroid abnormal.If Doctor can’t test everything there are private options.
Gluten can also be an issue with thyroid autoimmune. Worth testing for coeliac then even if negative (intolerance won’t be detected) trialing a strictly gluten free diet.
Thank you purplenails. We have been in and out of the hospital last few weeks. She is better now and settling ok. Numbers are improving. Saying that, we still have not seen endocrinologist and been told its bit of a wait. Thinking if we should take her private. I have just now ordered medicheck full thyroid test + vit d, b12, folate & Ferritin. Planning to have it done next week as it would be almost 4 weeks after the treatment start. She has started GF diet 3 weeks ago to see if this helps. Many thanks for the useful information.
Look into "Block and Replace (B&R)".
The patient is given an anti-thyroid drug (carbimazole or PTU) and they take a high enough dose to stop their thyroid from producing hormones at all, then they are prescribed Levothyroxine to give them enough T4 to live.
Some people do better on this than anti-thyroid drugs alone, and you can take it for much longer than anti-thyroid drugs alone.
It turns out that the longer people have their thyroid blocked the longer they might stave off relapse. If B&R goes on for long enough the thyroid may stay "normal" permanently.
Fruitandnutcase went on B&R and has now been in remission for years. You can see her profile here :
healthunlocked.com/user/Fru...
Thank you humanbean. I have researched B&R and will ask for that treatment when we see Endo as many people have reported positive results with this approach. Thank you
Not wanting to put a spanner in the works but be aware that block and replace can be difficult to manage with frequent juggling of doses. I tried it after yet another relapse in my 30 years of Graves and it just didn’t work as I could never get to a stable dose and ok levels.
But that’s just me, you may have better luck.
It is quite common for carbimazole doses to be split. The reason is that carbimazole doesn't last many hours in the body. As a single dose, the level can drop a huge amount in 24 hours - allowing the thyroid to "escape" and produce more thyroid hormone.
Not suggesting you change anything, but do discuss at the next opportunity.
In time, as the dose is reduced, single dosing can be fine. It is when the thyroid hormone levels are still high or very high that is makes sense.
Hi Helvella, we had to go to the hospital few more times for a follow up and blood tests, so I asked the doctor if we can split the dose, and was told to have it as prescribed by the a& endocrinologist. As the ambulatory doc's are not endocrinologist, they seemed uncomfortable to change the approach.
Her numbers are getting better, but will ask the endo for advice once we are seen.
Thank you
Hello BeeVel and welcome to the forum :
Sorry to read of this but we are looking at an auto immune disease and the most recent research is suggesting the longer the patient stays on the Anti Thyroid medication the better the long term outcome for the patient.
pubmed.ncbi.nlm.nih.gov/pub...
Managing a patient on AT drugs takes skill, regular monitoring and an experienced endo who understands the complexities of this poorly understood and badly treated autoimmune disease.
When Graves is raging, at any one time, you can have either stimulating ( TSI ) or blocking (TRab ) antibodies fighting for control and playing football with the thyroid - and then there can be times when you feel relatively normal for you - as these 2 extremes can also burn each other out - either way you'll likely end up totally exhausted by it all as it can be a bit of roller coaster of symptoms and doctors treat blood test results which tend to run behind the symptoms being experienced.
The issue is one of the immune system having been triggered to turn and attack rather than defend the body - so playing for time, on the AT drug longer term seems a sensible way forward.
Allowing her immune system to calm down will take as long as it takes - and one needs to try and consider the - why and what - has triggered the immune system :
Graves is a stress and anxiety driven AU disease - life/puberty/work/studies - as potential triggers come to mind - and you may like to read around further on the most well rounded of all the websites I ever found and check out the holistic more alternative treatments options and suggestions on Elaine Moore's Graves Disease & Autoimmune Disease Education Foundation website :
I was well on the AT drug but told it was too dangerous to stay on long term so told I was to have RAI thyroid ablation at my very first endo appointment - I knew no different back in 2004 and so drank this toxic waste and have deep regrets.
ncbi.nlm.nih.gov/pubmed/306...
I now self medicate as I became very unwell around 8 years later in around 2014/5 and found no help no understanding within the mainstream NHS service and fighting the system simply exacerbated my symptoms and so I have put myself back together again and take full spectrum thyroid hormone replacement and am much improved.
P.S. How was your daughter on the Carbimazole - there is an alternative to - PTU for short - Propylthiouracil - sometimes not readily offered ?
Hi Pennyannie,Thank you for the useful information. The elaine-more website has wealth of info, thank you for this.
Sorry to hear about what happened to you. This is exactly what I'm worried about. It's such a big decision and I feel doctors sometimes rush you into agreeing without fully considering the long term consequences.
My daughter seems OK on carbimazole for now, but we are yet to be seen by endocrinologist. Hopefully it's not long wait.
Many thanks again.
I was treated with block and replace back in 2012. I started on 20mg and when I was tested after four weeks nothing had changed so my dose was doubled to 40mg for another two months until my appointment time came up. At that point levothyroxine was added in as well as the 40mg carbimazole. The levo was gradually increased until I was taking the 40mg carb and 125 mg levo by which time my levels were back to normal. I’ve got asthma so I couldn’t take beta blockers.
I was told that my hospital treated with block and replace and that my treatment would last for a year which it did. I was also told that should I relapse it was RAI for me! Each time that was mentioned I said I was not going to have it. In the end I saw my GP and asked if I could be forced to have it and the answer was no and could the hospital refuse to treat me and the answer was again no so that lifted a lot of stress, stress not being very good for Graves.
I did go totally gluten free a year or so later when I developed inflammatory arthritis and have been GF ever since. I’ve checked my vitamin and mineral levels regularly ever since using home finger prick tests. I also eat a good diet, fish, eggs, meat but not too much, lots of green leafy veg, more veg than fruit and I try to get a decent amount of weight bearing exercise.
At this stage your daughter I imagine will be feeling dreadful and will need a lot of rest I would imagine - I was exhausted and felt absolutely awful for a long time - I was 64 so not in the first flush of youth.
I’ve read articles - but unfortunately can’t find them - about it being possible to stay on carbimazole for longer periods of time which is what I would have wanted to do and also there was research being done about a vaccine for Graves but it was very early days back then - when I first found it it was being carried out by Atipope but it has now moved on and has been trialed. It may be worth looking into that given that your daughter is so young.
btf-thyroid.org/research-ne...
If the worst comes to the worst then I’d maybe push for a thyroidectomy or that was my plan back then.
My sister in law had thyroid cancer 50 years ago when she was in her very early twenties, she was left for a year before she was treated because they assumed that in someone so young the lump she found was a cyst and because she was breast feeding at the time they left her until she had stopped.
She had her thyroid removed and also had radioactive iodine. As well as having two children under three she went on to finish her OU degree then trained to teach science. She has been all around the world since and her hobbies are mountaineering, sailing, mountain biking, hill walking, camping, all very energetic. Losing her thyroid has not held her back in any way. So although it must be very upsetting for you (and your daughter) that your daughter has relapsed so there is life after losing your thyroid and it can be a very good life.
Thank you fruitandnutcase. Your response brought tears to my eyes. It is so stressful and I feel lost, especially not wanting to make the wrong decision.Yes, my daughter is exhausted and she is also having her A level exams now. Not ideal but we have to manage it.
Its good to know that people actually do manage to have a good life even after thyroidectomy.
Thank you for the positive response. Much appreciated.
hi. I myself have graves and at levels close to and higher than your daughter. I don’t say this brag but rather I have a good understanding of how levels feel and the toll it takes mentally and physically.
I started on carbimazole but did not tolerate this so went on to PTU. I did PTU for 16 months and I was found to be t3 dominant meaning when my t3 got into range my t4 went under the range. So I then tried block and replace to try and find balance in my numbers.
I was very unwell. And I decided to go to surgery.
I had been severely thyrotoxic for 3 years when I went to surgery.
I would not do the RAI. I only wanted surgery.
So I am 4 months lost surgery and on NDT and doing amazing.
There are lots of choices.
I wanted to know I had exhausted every avenue before I went to surgery and I did.
I did try levothyroxine after surgery but I didn’t convert very well. So I went on to NDT and haven’t looked back.
This forum has been amazing. It has been a lifesaver. The knowledge here is the best I will find and the people here so kind and helpful.
Only you will know what to do. Everyone is different.
Hi Nike girl, glad to hear the surgery option worked for you and you are doing well on ndt. I have had some other positive responses on this forum regarding surgery. It seems there are ways to manage the condition, and some people end up doing well.Agree regarding the forum here, I've had some extremely good advice and information, which is great as it can be very stressful when dealing with this alone.
Many thanks
you’re welcome. Each of us has to make our own decision that is right for us. I waited 3 years before committing to surgery and asked every question I could about treatment after surgery and then held the drs to account about the treatment options because for me levothyroxine did not restore me and so I asked for NDT 11 weeks post surgery. In New Zealand 10,000 people are on NDT and luckily for us here it is a legal avenue of treatment whereby my gp can write the prescription. I pay for the medication myself as it is not govt funded. For me the NDT has been life changing. But like I said I found out all my options before surgery and then held the drs to account based on the advice they gave me. It’s such a hard road to travel. But u r not alone. There are very good knowledge people here who are here to help you along the way. I am forever grateful to this site
Hello there, I was diagnosed with graves in 2018.I tried carbimazole only, then block and replace.Due to my own personal circumstances I chose to have a thyroidectomy last June.I feel much better but am going through a dose change at the moment.I have kept my profile up to date, so if you would like to read it just click on the picture at the side of my name and there it is.I will say that in a perfect world where I had an endocrinologist on speed dial and blood tests were done on time I might not have ended up where I am.However I made my decision based on the current situation in the NHS and I have no regrets.Wishing you and your daughter the best of luck with everything, things will get better for her.
Thank you
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