This is my first time posting on the site and really need some advice as I am feeling really overwhelmed and not sure what to do. So I was diagnosed with Graves disease in 2018 and have been taking propylthiouracil. In June my endocrim told me to stop the medication to see whether my thyroid had gone back to normal but by August when I had a blood test for surgery for another issue, it was flagged that my thyroid was not functioning. My endocrim put me back on propylthiouracil 200mg daily to help my thyroid until I can have my surgery rescheduled. I last spoke to him in October when he told me that and he is happy with my thyroid function but my antibodies are too high, and that there is nothing I can do to lower this and that I need to start thinking about whether to have radio-iodine treatment or surgery.
These were the readings I got back for my blood test:
How do you feel with those results? I think they are in range but are they right for you? For example when I had my blood test back in February my TSH was 0.38 my T4 was about 22.7 so top of the range and my T3 was 4.46. I feel really well at the moment and I am taking nothing which shows how different we all are. My Thyroglobulin antibodies are 4000 and my peroxidase antibodies are 600 these have been that high for several years but I feel well. I haven't had my TSH receptor antibodies tested since I was diagnosed 10 years ago. I would ask Elaine Moore's advice and see what she says if I was you. My Endo suggested I had my thyroid either removed or RAI at the beginning and I glad I decided it against it because I still have my multinodular goiter which does sometimes affect my levels. You can read my story on my profile page if you are interested. All I will say is some people struggle to get the correct treatment after they either have RAI or their thyroid removed so I intend to keep mine as long as is possible. I do have regular ultraounds to check my nodules etc. but luckily it has got any bigger but that could change in the future.
Thanks Lora7again I will definitely read your story. In regards to my results I compared my October results with my June ones where the endocrim took me off my medication and the results were very similar. I feel fine in myself and have for a couple of weeks now I did feel the effects of my Graves in September as I was struggling with exhaustion, fatigue, headaches and constant pain in my right eye for weeks. Eventually found out in October that it was thyroid eye disease. It is starting to settle down now. I've started taking liquid B12 and selenium capsules (before I was having 6 Brazil nuts a day) but I feel that the B12 has really helped with my fatigue.
It was interesting reading your results and your not on anything and feeling well which is excellent. My peroxidase antibiotics is 41. I am really intrigued Have you changed anything like diet or exercise more?
I'm so sorry you have been made to feel as though you have failed and now face the drastic action proposed by your endocrinologist.
It seems to me the NHS has a 15/18 month window in which to try and treat your symptoms by blocking your own thyroid hormone production and then if your symptoms do not fit in with their guidelines you face loosing your thyroid gland to either surgery or RAI ablation.
Considering we are looking at an autoimmune disease, removing or destroying the thyroid does not solve the issue of an autoimmune disease, but takes you off their outpatient books, with a discharge back out into primary care, where you may or may not find an understanding doctor with an understanding of Graves and treating primary hypothyroidism.
There is a third option which is to stay on the AT drugs until you feel ready to come off them, if you ever do.
Graves is said to be a stress and anxiety driven AI disease so just simply being put in this situation will have upset you - take a breath, and try and calm down and get some space.
The NHS do not know how to calm down/reduce the antibody component of this AI disease and have probably, unintentionally, caused you to become more unwell than necessary. If you do not know of the Elaine Moore Graves Disease Foundation website you might like to dip in.
Elaine has Graves and went through RAI around 20 years ago and finding no help nor understanding with her continued symptoms, and being a medical researcher, started researching this poorly understood and badly treated AI disease herself.
There are now several books, and an open forum much like this amazing forum where you can ask questions of the members, and of Elaine herself, who has become a leading researcher and pioneer of Graves Disease treatments paying particular attention to the AI component of the disease for which current mainstream medical do not have any answers.
Play for time, read up all you can, as there is no need to jump until, if you are ready.
I'm with Graves post RAI in 2005 and if I had known then, what I do now, I certainly wouldn't have been compliant but it's a big step to say, No, when reliant on the system for medication.
I now manage lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism becoming very ill in around 2014 due to this treatment. I now self medicate with full spectrum thyroid hormone replacement which I was not able to acquire through the NHS though it is widely available in other countries as an option if T4 - Levothyroxine doesn't work well for you.
There is an article written by an eminent endocrinologist Professor Anthony Toft which is on this website in full somewhere : entitled Thyroid Hormone Replacement - A Counterblast to Guidelines 2017 - in which he states, 3rd page a 1/3rd of the way down:
" 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 recurrences of hyperthyroidism ".
I'm sure he has seen and knows a lot more than all of us put together as a NHS leading consultant and physician to the Queen when she is in Scotland - just check out his medical career - interesting that he wrote his as he retired from the NHS.
Sorry, my cut and paste required scissors and glue !!!!
P.S. Your thyroid is the victim in all this and not the cause as the cause is your immune system attacking your body.
Thank you so much for taking the time out to respond to my post. I'm sorry to hear that it's been challenging for you since having the treatment.. I do feel like they want me off their books aswell as from the beginning when I was diagnosed all they kept mentioning was surgery and radio iodine treatment. I think they were trying to prepare me but it was just too much trying to process that I had graves and then on top of that trying to prepare myself that there would be a high chance it would need to be removed or destroyed.
It is so emotionally draining but I am so glad that I have reached out to you lovely ladies on the forum which has given me the boost to keep my chin up and try my best to see whether I can heal my thyroid even just a little bit.
I will definitely have a look for Professor Anthony Toft article and Elaine Moore.
Graves is an auto immune disease and it is because your thyroid is such a major important gland that you end up in the hospital, as in some people Graves, left untreated, is considered life threatening.
If you can consider what might have made your immune system go haywire, you will be more than half way to being able to calm down your body's immune system response.
Read up on Elaine's website, as Graves is said to be stress and anxiety driven, and you may well find through life style and diet changes, relaxation techniques and quite honestly putting yourself first, for once, you can turn round some of this for yourself.
Knowledge is power, and you will need to be your own best advocate and you do not need to have your thyroid surgically removed or drink a toxic substance that is known to also taken up to a lesser extent, by other glands and organs within the body.
Just to add there are currently over 113 K members registered on Thyroid uk website who are the charity who support this amazing forum and whom tirelessly work at trying to improve thyroid knowledge and treatment for everybody.
I don't think this many people can all be wrong when it comes to thyroid hormone replacement treatment and the current guidelines and rules that doctors seem to find themselves constrained by in the medical mainstream.
Just read other comments and notice you have eye issues ;
On no account should you be considered as a suitable candidate for RAI as it is known to exacerbate or cause thyroid eye disease - considering you already have these issues RAI should not even be on the table as a treatment option to be suggested for you.
Many do chose to remain on anti thyroid medication long term. Medically there’s no theoretical reason against it although the very low risk of serious side affects never disappears (ie drop in white cells)
You will still need your thyroid levels regular monitored and be vigilant for side affects. The NHS doesn’t routinely monitor blood count.
It’s considered easier to treat hypothyroidism and this is left to primary care rather than frequent monitoring under specialist clinicians.
Often it’s made out you only have this option but allow yourself time to do your own research and make an informed choice. Factors such as if you have Graves eye disease or if you have contact with young children should be taken into account as to wether you should be a candidate for RAI. Thyroidectomy should also be an option open to you to.
Antibodies are the result of the thyroid damage not the cause. It’s not known how to manage or treat them. Often antibodies are only tested once for diagnostic purposes and not repeated, although It can sometimes be useful in term of indicating if you may be close to remission.
I’m in remission from Graves and I reduced my antibodies by going totally gluten free. It could have been that it was time for them the come down anyway but I think it was being GF.I started GF to see if it would work, not sure what to expect and next time I did a home finger prick blood test - three months later my antibodies had reduced - so I kept going and every time I tested and checked they had come down even more.
Like I say it could have been their time to come down but after that there was no way I would go back to eating gluten. You have to stick with being totally gluten free though, you can’t be ‘almost’ gluten free. I joined Coeliac.co.uk and got a lot of help, online website, magazine plus a dictionary with every gluten free food / ingredient known that man.
I had been treated with block and replace and my thyroid was back the where it should have been before I started on gluten free though so I don’t know what would happen if your thyroid is untreated.
I would definitely avoid radio active iodine if you can - especially if you are having problems with your eyes. We’re you treated with block and replace - carbimazole and thyroxine at the same time or by carbimazole alone? I was told my back and replace was the ‘quick way’ and it took exactly a year. I assume that means that titrations carbimazole alone would take longer to get the desired result. How long were you treated for?
Thank you for responding to my post, I am only on Propylthiouracil and have never had anything else with it. I've been on propylthiouracil for 18 months before my endocrim took me off but then he has put me back on PTU 200mg daily while I am waiting for an operation for another problem I have, but he has told me to start thinking about whether I want surgery or radio-iodine treatment. I wasn't made aware of the block and replace. I have started cutting down on gluten 2 weeks ago but I will try cutting it out completely and see whether that helps.
Hi, I have graves disease and have just started my 2nd lot of block and replace.I was only off medication for 2 weeks and my t4 shot up even higher than when I was 1st diadnosed.I also have thyroid eye disease and my endo ssid I wouldn't be able to have Rai because of this.He hasn't yet suggested removal of my thyroid but I do wonder how long he will give me on block and replace and how many times I can have it.Maybe because of covid they have suspended operations.After reading helpful advice on here I will try and push to keep my thyroid if at all possible.I do not know what my antibody levels are at the moment as my endo said it didn't matter as I would always have them.He has always been amenable to anything I have requested.My son was diagnosed with hodgkins lymphoma in 2014 and has been left with ulcerative colitis and I think the stress of this has led to my graves.This site has been very helpful in understanding graves and I've tried to be proactive, writing down my levels and medication and symptoms so I remember how I felt at particular stages.This has been helpful.Also taking selenium is recommended when you have ted.Hope this helps.
Good that your endo has taken your thyroid eye disease into consideration- good too that he hasn’t pushed you to have your thyroid removed.I’ve heard of people taking antithyroid meds for long periods at a time - that’s what I would want to do if I relapse. If you post on here and ask you might find people who are doing that.
I found my eyes were bad when my Graves was at its worst - incredibly dry, my muscles were weak and I couldn’t read for very long, my vision was blurred and I got vertical double vision. I found ‘overdosing’ throughout the day with preservative free eye drops (HycoSan / Theolose Duo / Hyabak) best thing to keep them comfortable. I’ve also since discovered that the Omega 3 Algae oil capsules I take for something else 250 mcg DHA make a big difference to my eyes as well.
You’re probably right about the shock and stress from your son’s illness probably contributed to your Graves - that must have been just awful. I hope he is keeping ok in spite of his ulcerative colitis which is pretty awful too.
Doctors generally don’t want to retest antibodies once they’ve found them - I pay for that myself - but somehow or another I feel happier knowing that they are now really, really low rather than what they were when I was first diagnosed. I suppose it’s because by going totally GF I feel as if I’ve managed to have some control over them when I felt so helpless and out of control when my Graves was at its worst. Good luck with your Graves.
Thanks for your reply.I too use hycosan drops and will look into the algae oil capsules.I hope I can stay on medication as I feel ok once they get the dose right.I've now had to start again on just 25mcg of levo which isn't enough and have to take time to get back up to 100mcg that I was on before.I can normally have an increase every 6 weeks.It's a slow and steady thing isn't it?
It is and the first time I needed an increase I felt as if I was becoming hyper again - someone on here correctly suggested I was needing more levo. My GP prescribed something I cant remember that used to be prescribed for stress but is also used as a painkiller these days. My endo scoffed when I told her and increased my levo. Same thing happened the next time I needed an increase but I was able to persuade my GP to give me an increase in levo - I imagine by that time it was only shared notes.
Hopefully you will be able to get back onto block and replace. I know I felt very well on it. I suspect they don’t like it because it means you are still on the endos books whereas once you have no thyroid you are at the mercy of your GP.
Do they think your eyes will settle down again? I know mine have done - it took a while but they did.
My eyes aren't too bad at the moment.They are a little dry , ritty and puffy.I hope they go back to normal but saying that I can't remember what they used to look like.I do know I never suffered with eye bags before.They are a little what I would call starey especially my right one.They do settle when my medication is right.I'm on 40mg carbimazole for the block and just last week started back on the levo as my t4 had come down low enough.I will have to work back up to the 100 levo I was on before.I have also heard that one of the reasons they push for either rai or thyroid removal is so you can then just be treated by a GP.My GP isn't allowed to prescribe carbimazole but can prescribe levothyroxine.Before I had this I never believed how ill thyroid problems can make you feel and didn't know how important the thyroid is for the whole body.
Sounds good for your eyes then. I was on the same - 40mcg carbimazole + levo until I was taking 100 / 125.When I was diagnosed I saw my GP on a Wednesday, has blood tests on the Thursday and came in on the Friday afternoon to find a message on the phone to say I had a very overactive thyroid with antibodies, she had left a prescription for 20 mcg carbimazole me on reception, made an endo appointment for me and told me to come back for another blood test after four weeks. I did that and got a letter from my endo telling me to get more carb from my GP and double the dose.
I imagine my GP was able to prescribe the carbimazole because my surgery file share with our local teaching hospital. She certainly wasn’t keen to increase my levo the first time.
Your thyroid really does affect every part of your body. Keep an eye on your bones - I am now discovering that my overactive thyroid was a marker for osteoporosis- unfortunately I wasn’t warned and didn’t take the care of my bones I could have so now I’ve got osteoporosis.
Thankyou for the advice about bone health.I will look up prevention of osteoporosis.My grandma had it.Also my son who had hodgkins and now has colitis was prescribed high loading doses of vitamin D by a consultant endo as his levels were extremely low.He takes it daily and as he's been classed as extremely clinically vulnerable under shielding he can get 3 months free supply by his GP .I'll definately check it out for myself thankyou.
Your poor son, ulcerative colitis is hard to live with. My son’s piano teacher had it as did the husband of someone I worked with years ago. If your son is taking steroids for it then they can affect bones too.
It might be worth having a browse through this site then theros.org.uk there is loads of advice on foods to eat and exercise that helps - they also have a free phone line staffed by nurses.
Tell your son to look into taking vitamin K2- Mk7 as well as his vitamin D - that is supposed to direct the vitamin D to your bones. I’m not sure if it tells you on the ROS site - my fracture nurse hadn’t heard of it - but if you look on the Bone Health part of HU you will see it gets lots of mention.
Don’t know if I’ve said here but I also take Magnesium citrate for my bones - I take other stuff too but I won’t bore you with that. 😊
Welcome AnnabelM,I would also recommend TEDct for good information. They also offer telephone advice & helped me find a specialist ophthalmologist my area. I use HycoSan Extra all the time to alleviate dryness & supplement with Selenium & Lutein & Zeazanthin (Eye Complex 7 from Amazon). I also wear reactive glasses/ sunglasses as my eyes are very sensitive to light.
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