I’ve been taking 40 mg of carbimazol and 100mg of levotheroxin as my bock and replace therapy for Grave’s disease for about 4 years. My levels kind of stable and “in range”. But the endo is constantly bringing the question that I had to stop all meds.
I don’t agree with that as I know it will end up back to the square one.
I had Graves eye disease 2 years ago. It is stabilised but I still have double vision and everything what goes with that.
My question is: is it possible to stay on meds for a long periods of time? If the new endo will ask to get off the meds I want to try to reduce it first gradually.
I want to avoid RAI as it will affect my eyes and I don’t want to go back into that nightmare. But I know that taking meds long time can afferir liver and kidney. So, it looks like a dead end in any direction. (((
Thank you.
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Healthylife21
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Hi Healthylife, your story is similar to mine but there is one thing different that stands out. I am on the lowest effective dose which for me is 5mg. Carb and 50mcg Levo. As there are many papers showing this is safe myself and my endo are happy for me to stay on it long term. I do not know your history but wonder if you have ever experimented with lowering your dose. My TED was assosciated with going hypo which can happen on the wrong dose of meds. Perhaps if you could give a history of your blood test results people could comment further.
Thank you! Good to know that some doctors can agree with lowering dose. I think I would go this direction and try to low the dose and find the optimal for the long term.
Haven’t seen the doctor for a year. But for the last 2 years was always told that my levels are in range and stable.
Can I just interject there - as I too heard words such as " in range and stable " - but the medications should be titrated and adjusted and it's a fine line within the ranges, as to where you will feel at your best :
Do they ever read or log your antibody levels as this area seems to be " lost " in the current treatment plans but is so important to understand and try and reduce.
I read Graves is stress and anxiety driven AI disease and it's very much up to the individual to look at ways of reducing elements in one's life that " don't sit right " with you and also to look at diet for any potential, other triggers
I would be concerned if my endo told me my results were in range and I was on the high dose you are on ! While Graves is active your TSH will be low or suppressed. Do you have any results we can look at ? If your TSH has risen into range it may be your Antibodies have decreased and you are heading for remission. Or it could have risen because your fT4 is too low for your needs. Going even slightly hypo affects my TED. Your blood results need closer scrutiny. You don't want to be on such a high dose of Carbimazole any longer than you need to.
Being on a high dose of meds - that’s what worry me also. I feel like lowering the dose gradually is my way to deal with it. My last December blood test results ( as it was given via phone call ) :
T4 -24,5
T3 - 4,4
TSH - 0,34
How in range that?
I will find other results for previous years. As this one the only blood test I had for the 2020.
We are advised on the forum that we are entitled to have a print out of our historic blood tests which I would recommend you get and post for comment. We need the lab ranges and was it fT4 and fT3 not T4 and T3. When my dose was being adjusted I was tested every 6 weeks. With block and replace it can take time to find the right balance so doctors can be quick to suggest more definitive treatments which are not always best for us
Thank you asiatic ! I have a few printed pages. There what I found:
26.02.2015
FT3 - 31.7
FT4- 63.7
TSH - 0.014
I can see that time I wasn’t on meds yet as I’ve been waiting to see the endo. I felt the worth ever - lost weight, but was eating a lot, tachycardia despite propranolol, extreme fatigue ( couldn’t even raise my hand to comb my hair). Had hot flashes and mood swings.
After starting block and replace therapy, the blood tests follows:
30.04.2015
FT3 - 6.3
FT4- 16.8
TSH- <0.014
01.06. 2015
FT3- 7.1
FT4- 16.3
TSH- <0.014
28.07.2015
FT3- 3.3
FT4- 7.8
TSH- 0.11
05.08.2015
FT3 - 3.3
FT4- 7.8
TSH- 0.11
07.09.2015
FT3- wasn’t checked
FT4- 22.1
TSH- 0.03
02.11.2015
FT3- 4.0
FT4- 23.1
TSH- 0.08
04.03.2016
FT3- 3.9
FT4- 20.1
TSH- 0.48
I’ve just realised that I’m absolutely confused with dates and years! Meaning I’ve had Grave’s since 2015! So, I’ve been on high dose of carbimazol and levotheroxin for 6 years now! I’m sorry, I really don’t have a feeling of time ((.
Since 2016, my blood test results were stable according to the endo. But my eyes stabilised only in 2018, when my ophthalmologist and I decided that I can cope with double vision and don’t need to go for operation.
I have some blood tests in 2016 but they were taken in Poland and looks like the way they measure FT4 is different.
03.2016
FT3 - 1,82pg/ml ( the range : 1,71-3,71)
FT4 - 1,14ng/dl (the range: 0,70-1,48)
TSH - 0,0826 (the range: 0,3500- 4,9400)
05.04.2016
TSH - 0,4677
Since then I had a few blood test during 2017-2019. But didn’t ask for print outs as it was always a battle with her.
So, the very last was the one I’ve already posted :
09.12.2020
T4 -24,5
T3 - 4,4
TSH - 0,34
Still in shock that I felt 6 years as 3! I guess it is really time to do something about my meds- lowering the dose.
I think you are right it is time to be more proactive. Get printout of your more up to date results and I think it is perfectly reasonable to ask for a review and an opportunity to be monitored while you SLOWLY try to reduce your Carbimazole. Good luck and let us know how you get on
I too have Graves but had RAI thyroid ablation in 2005 - and then developed the thyroid eye disease and obviously, hypothyroidism.
To be honest I was more well on the AT medication than I have been since RAI becoming very unwell some 8 years post RAI and it's only in the last few years since I started reading up on this amazing forum, and then self medicating has my health improved.
My initial symptoms of Graves were dry gritty eyes, exhaustion and insomnia and the AT drug, Carbimazole worked well, and I continued to work as I was a few years short of being 60, but I was told at my very first hospital appointment I was to be given RAI the following year as although well on the AT drugs they were too dangerous to stay on long term.
I knew no different and trusted the medical profession and deeply regret this treatment option.
Considering you have already had significant issues with your eyes, RAI should be off the table, as it is known to exacerbate or cause TED.
If you don't know of the Elaine Moore Graves Disease Foundation website please dip in there. Elaine has Graves and went through RAI in the late 1990's and finding no help with her continued symptoms, and working within the medical profession, decided to start researching this poorly understood and badly treated autoimmune disease herself. She has now written several books on Graves and AI thyroid disease and also offers help via a world wide forum for all Graves patients and their families, and also replies personally if you choose to contact her.
There is also a very interesting publication from Professor A Toft the eminent endocrinologist that is definitely worth reading. It is on this website somewhere, but am sorry, sending links eludes me : entitled - Thyroid Hormone Replacement - a Counterblast to Guidelines and was published in 2017 in the Journal of the Royal Physicians of Edinburgh:
And I quote :
" 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 iodine1-31 or surgery in patients with Graves Disease irrespective of age or number of recurrences of hyperthyroidism."
I think this says it all as living with Graves and hypothyroidism, let alone potential eye issues is no fun and currently in the UK there seems to be only T4 Levothyroxine hormone replacement whilst on the continent, the States, the Far East and most forward looking countries there are options if T4 thyroid hormone replacement does not work well for you.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being your inner central heating system and your metabolism.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 and T4 said to be about 10 mcg T3 + 100 mcg T4.
I was refused treatment options on the NHS and found no help nor understanding with my continuing symptoms and have had to resort to buying my own full spectrum thyroid hormone replacement and I now DI myself, and am much improved.
Thank you pennyannie! So good to find such an informative forum and helpful people. I agree, RAI will bring much more problems and side effects in my case as my eye doctor said. I didn’t have too bad eye condition but still double vision is not easy to cope with sometimes. So, I definitely don’t want anything to make it worse.
I’ve head about Elaine Moor and should read into it more.
I was lucky to have a good optholmologist who wrote to the endo doctor insisting that she shouldn’t advice me to do RAI. But now I moved to the different city and hope the new endo doctor will be somebody with more holistic understanding.
Yes! stay on carbimazole for as long as it takes. I took it for 4 or 4.5 years, & Thyrotoxicosis & eye disease has not returned. DO NOT under any circumstances take RAI, especially as you had eye disease. Endos just want you out of the way for their convenience, not for your benefit. You need to see if it burns out, many do. 4 years is too soon. Do you have any printouts? Read as much as you can of patient experiences, patients know best, especially here on TUK. I reduced gradually, & have no regrets, that is how it's done in Europe.
As long as you obtain liver & kidney testing & watch out for anaemia you won't need to worry about side effects. You are fortunate in that you have been offered B & R. I was not given that option, (only carb & propranolol), with devastating consequences. It sounds like you are doing well.
My kidneys were bad at very start of treatment, but then I was on maximum dose & working. My kidneys did recover, but then they were bad for years before treatment started! So don't let them scare you into anything drastic.
As you have been stable for 2 years, it wouldn't hurt to lower dose. 6 years is too long. I had to fight to get my dose reduced & then stopped. In recent years my kidney function was not good when I was at my most hypothyroid, that maybe happening with you now.
My thyroid did not regain normal function, & I don't want to see that happen to you.
You have had some good advice from this forum I see. Please stay with this forum & let us know how you get on.
Yes, that's why I asked u for the ranges so we can have a clearer idea of your thyroid status.
Going over your replies here, u need to be tested more than once a year. To still be on such a high dose of carbimazole, levo I'm not sure if that's high, after 6 years, seems to signal some instability with the Graves. It's not really 'settling'. For it to be considered settling, would be as asiatic mentioned, that meds are titrated down to the lowest effective dose for u.
Can u remember why the doctor decided on a carbi/levo treatment, rather than just carbimazole?
When u see the doctor, please have your Graves antibodies tested as well. That would let u know if your body is ready to come off meds and try for remission. This might also help u decide if u should start trying to titrate down your meds. A high antibody level would indicate its not yet time to try for remission.
U mentioned "I don’t agree with that as I know it will end up back to the square one."
I think u know your body best, and u know its not ready for u to come off the meds. Have your Graves antibodies tested, that would help u decide.
When I was diagnosed with Graves in 2015, the first treatment was only carbimazol as it was different doctor.
Then if I remember correct, next time was different endo doctor who changed the dose, but kept me on only carbimazol too.
Then after few months, my next hospital appointment I saw again another doctor who desired to try this block and replace treatment . That’s why since that I was kept on it. Even though the endo was changed again for a different one, the lady who kept suggesting me to come off the meds completely. That has been for the last 3 years I guess. But I moved to the different town 1,5 years ago and haven’t seen the endo since. First, didn’t want a new doctor to stop me having the same block and replace. And then with “pandemic” situation I was not sure if it is a good idea to go to the hospital at all.
But now I have more confidence that there is a practice of lowering the dose instead of cutting it off completely or sending patients to RAI when then relapse after being off meds.
So, I’m going to get an endo appointment and raise all those questions and tests as was advised here.
As for Graves symptoms,
I’m more or less tired depends on the day, my eyes has a double vision but I got used to that just remember not to look up or to the right. That what I have to live with. My muscles and joints aching also depends on the day and how much physical I was. I have problems with thermoregulation - getting cold or very hot suddenly, but as everybody just get used to that as a part of having Graves.
I understand it won’t be the same as before, so I should consider myself lucky that it is not as bad as somebody has it.
I guess the hospital maybe didn’t have enough doctors at that time. But then I’ve been with the same endo lady for a few years. Just wanted to add.
I really don’t complain as my current state is not ideal but way much better. People won’t know that I have Graves. They think I’m fit and healthy, because I am slim and look younger my 52 yo.
I’m lucky to have a very supportive new husband.
The ex husband was pushing me to get RAI and “ get on with life”.
Thanks god I’m not there anymore ))).
The only my worry that it might change if I have to get off the meds. But as I said, lovely people on this forum gave me big hope that I can gradually reduce my meds as I feel that the way for me.
Ideally you would be able to compare past & current TSI or TrAb levels. If they were high at diagnosis they would almost certainly be lower now, being on carbimazole and levo. You would be seeking for far lower, near minimal levels before attempting gradual tritration of both medications.
Often TSI or TrAb are not checked, they just skip that step and treat as Graves based on low TSH. If tested you may find it was organised by the hospital specialists. (GP prefer to pass off to relevant department). Unless endocrinology department wrote to your GP with results and admin staff correctly logged the results you won’t have the documentation on your GP record. You can alway go directly to hospital department secretaries and track down records. Or most hospital website have a records coordinators who can help. I recently tracked down a hospital record from 2014, all via email form.
Propranolol was prescribed at the very beginning by the GP while I was waiting for the endo hospital appointment. As soon as my heat rate and palpitations gone down I stopped taking it.
That’s good! I still take a tiny dose as without it I get migraines. It does affect uptake of levo and conversion of FT4 to FT3. It’s helpful for hyper but not for anyone hypo.
Another antibodies test is TPO. This one is commonly tested. People with Graves can have this antibody but not all Graves have TPO; it is found in people with Hashimoto's.
No, haven’t had gorier, my thyroid glad is not big, even though I can feel it inside. I don’t think I had any other test except main 3. The last lady endo, who was my doctor for the most period of 4-5 years was not very collaborative. Once the Grave’s was diagnosed she sometimes had my test done only for 2 main positions, and when I asked why, she was replaying that she can see all she needs from just two tests.
No, I won’t see her as I’ve moved to a different town since last year. I will check my print outs again but as far as I could see it was FT3, FT4 and TSH checked regularly. Also had blood count and liver and kidney tests.
Hi, I have graves disease also.I started on carbimazol only in September 2018.The aim was titration but it was very difficult to get the right level.I switched to block and replace in December 2019.I stayed on it until September 2020, then stopped all meds cold turkey.My endo wanted to see if I was in remission as he said my levels were good.Within 2 weeks my hyper symptoms were back and I have had to start block and replace again.He has mentioned staying on it for 12 to 18 months then trying again but I don't know how long I can do this for.I know I can't have radio active iodine as I have TED and he has agreed.I didn't know that long term use of tablets could damage kidneys or liver.That has never been mentioned to me.I feel good on the tablets when they get to the right dose.I just think it's difficult for the NHS to find the time to get tablet doses right when you can't get appointments close enough together.My endo is a nice man who is approachable but I think he is snowed under with work.No good to me I know but I can see why they push surgery and RAI.Hopefully things will work out for me.
Oh, I’m sorry to hear your story sounds very like mine just for the shorter period of time. And yes, unfortunately while the pandemic is still a priority it is all off any schedule for “normal” appointments and tests. At least your doctor agrees against RAI.
What dose of Carbimazol and levotheroxin you are on?
Thankyou for your reply.I am currently on 40 carbimazol and 50 levothyroxine.When I was last on block and replace I was on 40 carbimazol and 100 levothyroxine per day.I will probably end up on that again but I have to build up my levothyroxine again slowly every 6 weeks after a blood test.I'm feeling a lot better.I need to try and build up my strength again.I've just started doing Joe Wicks over 50s yesterday and felt really energised after doing it and not shattered so I'm going to continue with that.
I’m on 40 carbi and 100 Levo. And also feeling ok at the moment but will see what a new endo says. Good for you doing exercises I’m trying to get back to it too. But feel tired and muscle ache after 10-15 minutes. But I know that’s the ways for me to develop it gradually.
Thanks for the reply.I only just feel well enough to start exercises and it is a low impact more of a joint mobility one rather than jumping up and down full pelt.I'm being careful as I had an episode before christmas.I have had migraines all my life and my eyes went funny as usual but I didn't get much of a headache so I changed my sons bed.My face went bright red and I felt hot and my heart was racing.I went downstairs and felt really funny.I couldn't get my words out to tell my children what was wrong.It was like my words were stuck in my mouth.I felt so stupid and started crying and my daughter rang 999 thinking I was having a stroke.My sister had one at 37.I was checked at hospital, had a scan in the donut thing, a scan of my neck and they concluded it was a migraine.I have never had that symptom before but apparently some people can lose their speech for a while.I've been a bit scared to overxert myself since but feel alot better now my t4 levels have come down .I think I should have taken it easy while my body was coping with very high t4 levels.Sending you best wishes.
Yes iI do like walking and we have a little dog.I also don't really like jumping around as it can give me headache.Yoga sounds good and relaxing.They said it wasn't a stroke with the checks they did.They said migraine.It was frightening though.Shows how your life could change in one split second.My eyes are still troubling me.I use eyedrops every day for the dryness and they ache when I look up.They still look different, puffy upper lids and brows and a little blood shot and starey.The hospital said I have a mild case and just recommended ibuprofen and moisturising drops.I don't know how long the disease can be active for.Its been around 2 years now, maybe it'll always be around to some extent.
My TED was for around 2 years. As my ophthalmologist said , normally it gets worse and then gets better and stable after a year. I had swallen and gritty eyes, and for a few months I was wearing sunglasses even indoor so not to scare people. But then those symptoms gone but mild double vision stayed. We decided that I can manage living with that as the result of operation wasn’t guaranteed .
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