I should explain that my son has graves he’s 21 and was diagnosed during lockdown two years ago. I have Hypothyroidism/hashimotos & so understand some of this.
He has never seen an endo and has indeed been under 3/4 different ones who ask for bloods and dish out pills. The Gp was good but after getting an endo to take over left it to them. His meds carbimazole & propranolol were eventually reduced and stopped about 6 mths ago. T4 & t 3 came in to range and symptoms stopped. Until 2 weeks ago- his heart rate went sky high and symptoms came back. He tried to get through to the endo( now changed again!) to no avail. On Monday he nearly fainted at work. He’s an ODP, so they put him in recovery and wired him up… his heart rate was 140bpm and other stats not good, they looked after him and made him rest. I went to pick him up and immediately saw his throat was swollen.
Coincidentally the endo had left a message for him to pick up a prescription when we got back home & to repeat bloods in 4 weeks. Still no sign of an appointment. He then went to see his GP who again took bloods, but she told him he would have to have RAI and then wouldn’t be able to have kids for 5 years. & would then have to have His thyroid removed. His T4 was 68(range12-22)
So questions are:
Does he have a chance of remission after the throat swelling?
Does he/or will he have to have RAI? & what are the subsequent positive/negatives to this?
Does this lead to thyroid removal?& what would be the consequences of this?
What tests should we be asking for.
Thank you all for reading, it’s very much appreciated x
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Rennixon
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hello there, I was diagnosed with graves disease in 2018.My t4 levels were in the high 60's like your son.I was put on proprananol 10mg 3x a day to help with symptoms until I saw an NHS endo.It was about a 3 month wait.I was then started on carbimazole 40mg per day.This helped to bring my t4 levels down.He will need regular blood tests (every 6-8 weeks) to make sure levels don't go too low.I weaned slowly off proprananol as my levels came down.Unfortunately for me I was left too long between blood tests and kept swinging from too high to too low.I also have thyroid eye disease and the constant swinging from high to low wasn't ideal.I then started a treatment called block and replace where the carbimazole stays at a constant high dose and as t4 starts to get too low then thyroxine is introduced to replace your own t4 which is being blocked by the carbimazole.This has been better for me and my eyes but it still needs regular blood tests to keep an eye on levels.I have come off all tablets once to see if I was in remission but within 2 weeks my t4 was back up in the high 60's.I am back on block and replace and also proprananol to lower my fast heartrate and stop migraines which I had been getting.I cannot ever have radioactive iodine treatment as it can worsen thyroid eye disease.I have given everything a good try and am now awaiting a thyroidectomy.Your son is very early on in his diagnosis and has other options to try and time to try them before even having to consider radioactive iodine treatment.My best advice is to learn as much as you can by asking questions on here.People are very helpful and have alot of personal experience as to how to navigate things like blood tests, endocrinologists, keeping your own personal records etc.You can even do it on your son's behalf if it's too much for him at the moment( I have a son who has health problems and I feel like his PA as sometimes things are too much for him.)Also remember that every persons experience ìs different and just because something hasn't worked for one person doesn't mean it won't work for someone else.Just because I haven't managed remission doesn't mean your son won't.I'm a 57 year old woman, he's a young man.If you ever feel like reading my story I keep it updated.Just click on the picture at the side of my name.I'm sure more people will come along with better and more thorough information.The main thing is to learn as much as you can so you can make informed choices.Best wishes to you and your son.Hope I've helped in some way.
Hi, thank you for your reply. It’s a little overwhelming at the moment for both of us. But he’s now been on the meds since Monday and already feels so much better. He’s goi g back to work today, so we’ll see how that goes. Im trying to read as much as I can in order to enable him to get the treatment he deserves and needs. We need to be more prepared this time around and see what the endo says.
hello, yes it is very overwhelming and mostly information is not given unless you ask.one thing I found helpful is to get the endos secretary's phone number and email.When I had had a blood test I could ring her and she could print them off and pass them to the endo to look at.It saved a bit of time but sometimes it was still 2-3 weeks until I heard from him .I have taken private blood tests which I found helpful but haven't paid for a private endo( a bit out of my price range atm).I'm glad your son is feeling better and hope things continue to improve for him.Best wishes.
Medics are expected to limit carbimazole to around 18 months. They say after that time permanent solutions should be given.
Although from the sound of it your son has not been well monitored and treated.
Many can stay well on carbimazole long term.
What are his blood test results.
TSH
FT4
FT3
TPO antibodies
TG antibodies
TSI & or Trab must be tested to confirm Graves
Also important to test
Folate
Ferritin
Vitamin
B12
How much carbimazole does he currently take? How often are his levels checked. EG 6 weekly until stable then every 3 months?
From what you have said the medication should not have been stopped after 6 months, that’s too soon to expect remission. A low dose should have been maintained much longer. Doctors are rushing the steps here. EDIT I read that wrong he was treated for longer but stopped 6 months ago. Were his levels & dose low at time? Was he monitored after this time?
If & when your son is ready for permanent solutions both RAI OR Surgery should be an option. Either / or - It’s exceptional that both treatments are ultimately required.
Fathering a children is not recommended for 4 months after RAI treatment. (It’s 6 months for mothers) I’m not sure why 5 years is suggested. GP do not usually manage this treatment, their facts may be wrong.
I’ll include link to a leaflet many hospitals hand out about the procedure.
A single treatment is usually sufficient but 10% go on to have repeated treatment/s. (The time applies after each treatment)
RAI is hospital’s preferred option as it’s very quickly & easily administered treatment In out patient appointments whereas Surgery requires hospital admission.
Both treatments are highly likely result in hypothyroidism which doctor view as easily managed in primary care.
Come back with test results and we can advise further. I suspect the levels are not being monitored sufficient enough and medication levels are not adjusted appropriately.
I refused RAI early on - the specialist said she did not want to manage & monitor me any more - the GP will have to do it. She stated “Unless I have treatment soon, I couldn’t be kept on her books”
Doctors do seem to be rushing to the end of treatment options, it seems to be they are under immense pressure the manage waiting lists.
Thanks for all the info. I’ll check what test they did. I think they only did T4 though. I’m going to tell him to ring the Endo’s secretary and ask for full panel of tests, but I do t hold out much hope. My thinking is if we’ve asked and they refuse then I’ll pay for private testing and they’ll have to go with it. Any idea who does the tests??
Hi. I have Graves also. However, located in the US. Not sure how your health system works but he needs a Endo not a GP. It is all a balancing act with methamazol our version of carbimazole. When first diagnosed with all your sons symptoms I was told that the RAI was last resort. He explained that getting monthly blood checks would give them info they needed to raise or lower the meds. I did take proponol for about a month weaning off and as the thyroid balanced I needed it less. After about 6 months of monthly checks it started to settle down. The Endo told me that almost all Graves can be put in remission as long as meds are taken about same time daily and blood work checked about every 6 months unless symptoms start sooner. It has now been 5 years and little adjusting. The reason they do RAI is because it is easier to prescribe a certain amount of thyroid replacement versus trying to take away too much production. With that said with a Endo willing to work with your son this should be solvable with some testing and care. Mine was almost as high as his. Now pretty stable and tge methamazole is cheap.
Good luck, I hope you find a good Endo to help him. It can be done.
Thank you. We are hopi g this endo will stick around that long. As for taking meds, he works different shifts and in an environment where he won’t be able to take meds, so this will be difficult to plan.
Hi Rennixon, the problem I’m seeing here is that your son isn’t being tested often enough or monitored closely enough. In the early days, I got tests every 4-6 weeks at a point because my body was incredibly sensitive to modest levels of Carbimazole and I kept swinging hypothyroid very quickly. I have Graves’ Disease by the way.
For the last year or so, I’ve only needed to test every three months as we’ve found a dose that works for me. What’s the longest period your son has consistently been on Carbimazole for? If it hasn’t been up to 2 years, then I think it’s ridiculous to already be discussing RAI, but that’s lazy doctors for you.
I’ll be 2 years on Carbimazole in a few months, and I’ve discussed staying on a low maintenance dose on a longer term basis with my endo - until my antibodies have been significantly decreased. There’s some interesting research on low dose Carbimazole that a lovely person share on here a while ago: mdedge.com/clinicianreviews...
I’m by no means here to demonise RAI, but it’s always good to know that there are other options. I also don’t think getting RAI is a decision that should be rushed, or that your son should be pressured into because it’s irreversible. Also, RAI can worsen TED, although there’s no mention of your son showing signs of eye disease.
Regarding Propranolol, I found it to be a very effective treatment for me, but I had to taper off it after 2 weeks due to the side effects. You can read some of my earlier posts on my experience with Propranolol. I was taking 40mg, twice daily. It’s not something I’d recommend staying on for too long if possible as it’s a bit of a harsh drug, at least it was for me. Also, once on the right dose of Carbimazole consistently, a normal heart rate will be maintained.
Hi, he was on Carbimazole for 18 mths, & then it just stopped and bloods weren’t taken until 8 weeks after and then nothing. He was promised a consultation but it never came through- we now know because the endo had left and passed on his case… it’s been very frustrating to say the least. We’ve no idea if they have tested antibodies & I’m looking into private testing atm. He off work this week so he’s going to hassle the Endo’s secretary for more bloods to be taken, so we can monitor what is happening. Beyond this he does now have an appointment to see the endo in 6wks time & hopefully get some answers to the many questions we have.
Hi, I have had Graves since 2012. I have had several episodes of hyperthyroidism and prescribed carbimazole but responded better to ptu. I found that getting bloods to check mineral levels was useful so I could use targeted supplements. Going gluten and dairy free completely changed the game for me, so I'd recommend giving that a go and seeing if it helps.
My condition is under control now and I havent had a hyper episode for nearly 2 years. The last one was triggered by pregnancy and was mild.
If you are able to, I would recommend seeing a functional medicine practitioner. In my experience most endos are useless and a lot of gps uninformed and dont know a lot about graves.
Thank you - can you tell me what ptu is please. I’ll advise over diet, I know it can help, but I think this may come later for him.No idea where to start with a functional medicine practitioner 🙃
propylthiouracil (PTU) is 2nd option type of antithyroid.
It’s actually older than carbimazole but is known to induce slightly greater incidences of liver issues.
It’s used during pregnancy. Or is used if side affects severe with carbimazole.
Lots of reports that specialists often say they same - & if reactions develop with carbimazole they will also have it with PTU, but that’s not accurate - chemically very different. PTU has a affect on lowering conversion as well as the reduction in hormone reduction.
I had awful side effects from carbimazole so was prescribed ptu - as described above - when I was pregnant that was my only option, but I had it before then too. In my experience, it had a better effect and quicker than carbimazole, but everyone's different.
If you're UK based have a look on Institute for Functional Medicine website. Ifm.org and you can search for practitioners near you. Its expensive but I got to the point of absolute despair and was willing to spend some money on it. My practitioner gave me lots of really useful advice and ran tests I wouldn't get through my gp or endocrinologist and it was worth every penny.
I also found the wahls protocol and the autoimmune protocol regime useful, have a google or doctor Wahls and check out autoimmune wellness.com.
I'm sorry you're son isnt feeling well. It cam feel hopeless, but he can recover xx
Just to add, my experience is that managing stress, diet and getting enough sleep has helped me maintain a stable status. Needed all the meds first, but alongside that I mean.For me, RAI or surgery isnt a solution. It wont solve my immune imbalance, it will just give me a different set of symptoms to manage and lifelong medication.
I have Graves Disease diagnosed in 2003/4 and had RAI thyroid ablation in 2005 and deeply regret this treatment and wasn't even given an option, and didn't know there was one, and have learnt of my own situation back to front, when finding this forum in around 2015 when very unwell.
I now manage lingering Graves, thyroid eye disease - caused by the RAI and hypothyroidism and to have any QOL am self medicating as the NHS only offered me T4 - Levothyroxine and have refused to prescribe me the addition of T3 - Liothyronine nor Natural Desiccated Thyroid.
Graves is an auto immune disease, there is no cure, and the thyroid the victim in all this and not the cause as the cause is one of the immune system being triggered and mistakenly attacking the body.
Graves tends to be stress and anxiety driven and there is likely a genetic predisposition, maybe a generation away with someone in the family with a thyroid health issue.
RAI is a toxic substance and slowly burns out the thyroid in situ rendering the gland disabled and the patient primary hypothyroid.
RAI is also taken up, to a lesser extent by other organs and glands within the body and there appears to be a risk of cancer though doubt you have ben told of these consequences.
When hyperthyroid it is considered life threatening and requiring specialist hospital management.
When hypothyroid, irrespective of how you got there, you are considered better served in primary care and discharged by the specialist at the hospital.
If I had my time again I would stay on the AT medication long term :
If this wasn't an option for me I would have a thyroidectomy :
I would certainly not have drink a toxic substance with unknown consequences.
You might like to read around Graves Disease and the most well rounded of everything I researched is the Elaine Moore Graves Disease Foundation website :
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