Hello just wondering if someone could clear a couple things up for me that u don't understand, iv had graves deases for over 2 years and been on carbomzole for it, I was due to go and have a full tt last march but it got cancled due to covid and rebooked for December and cancelled again I stopped stopped my carbomzole in September because I just wonted to give it a go without them and since then my blood have been coming back as all in rang, so now iv got no futher treatment boo ked in but I feel worse than ever so my question are
Is it possible to be off all medication and be having normal blood test results but still be feeling all the symptoms
And also I thought if you had graves it was for life unless u had the opp or rai treatment
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hellothere74
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Hello my t4 was slightly high but at only 20.5 and the rest were all in rang iv been having bloods every 6 week since September and my last ones were take an just over 2 weeks ago, I stopped the meds because they were making me feel so ill and I felt a little better no great but better, no docs say with my t4 only slightly over the is no need for treatment and to redo bloods 2 month but I feel worse than when my levels were raging,, thank for the peply
Could it not be withdrawal symptoms from stopping the carbimazone? (I don't know if this is a thing but could explain it)
Did you wean off slowly? I was told you are normally on meds up to 18 months so it sounds like they are right to say no need for treatment and to monitor every 2 months to see if under control, at least this way you can find out if you can be med free or if you need to go back on, so give it the proper timeframe to monitor as you are still having regular blood tests (Plus you said you felt ill on the meds before anyway!)
I was taken off the meds around the 1i month mark but quicky went back to hyper, so was put back on the I stopped the meds because I was felling terable on them and when ever I mentioned it to my endo I was told that my levels were all under control and he doesn't know or ever had any of his other patients complain about still feeling ill but u do need surgery and I should speak to my gp because it must be something to do with other than my thyroid, so gp would run various test and everything ok, and iv just been bk and four like that while waiting for surgery for a long time just realised nearly 3 years not 2, but yea I'm still getting regularly bloods so ill just try and hold it out and hope for the best,, thank u for your reply
Sorry thats abit confusing, for the seccond time my meds were stopped I decided to stop them on my own acord but didn't tell my endo or docs I had I swore the meds were making me worse but I still was having regalre bloods done for a bit and after my second lot of bloods still come bk normal I started to question why I was needing surgery and that wen I told the endo I had been off all my meds for a few months, and now my levels are still in range but I still are having symptom if that makes sense,
Have you had your vitamin levels checked? It might be worth having your magnesium levels checked as well (have you had any stressful events recently or in recent years?). Low magnesium correlates with higher TSH levels. If this happens and you're converting ok, then you would become hyper. Just a thought.
Graves is an auto immune disease so in effect for life, but read it does tend to wax and wane.
It's said to be stress and anxiety driven and there are also life style, and diet considerations that may need to be considered by you, to try and calm down your immune system response.
Graves is classed by the NHS as a life threatening health issue which puts the patient into the hospital 's outpatient system - where generally there seems to be a 15/18 month window where AT drugs are prescribed with a view to the patient finding " remission " and if this doesn't happen the drastic action of thyroid removal or ablation are the NHS options.
Maybe this " window " needs to be longer, maybe there isn't enough time in the system for some people ? Who is to say ?
I was told at my very first hospital appointment that I was having RAI thyroid ablation the following year ?
I seriously think a better option for most people would be long term AT medication but this would be more expensive than thyroid surgery and much more expensive than the cheapest option, RAI thyroid ablation.
However by taking such drastic action of either a thyroidectomy or RAI thyroid ablation it does get your through the system as your life threatening health issues becomes a life limiting health issue and your are discharged back out into Primary Care and the responsibility of your doctor.
I read of many people on long term AT drugs taking as little as 2.50 mcg every other day :
and other people taking low dose AT medication, when and if, they feel they need it :
I think I recommended to you Elaine Moore's Graves Disease website last time we spoke as she has made extensive research into alternative and more holistic treatment options of this poorly understood and badly treated autoimmune disease.
I have Graves and went through RAI in 2005 - I deeply regret this treatment but knew no different at the time, and now manage lingering Graves, thyroid eye disease and hypothyroidism. I have been denied both NDT and T3 through the NHS and now source, buy and monitor my health myself with full spectrum thyroid hormone replacement and am much improved and have my life back again.
You may well feel worse coming off the AT drugs if your Graves is still active - what dose of AT drug were you taking ?
Do you have any antibody readings to compare with from when first diagnosed and also where are your T3 land T4 levels now compared to when first diagnosed
Hi. I have Graves and by no means am I expert. But just thinking. If it takes 4 weeks to see bloods come down does it mean the body has to expel the drug and could take 4-6 weeks to start moving above the range albeit slowly. Depending on vitamin supplementation. It’s just a thought. It would be better to see what the antibodies are doing that would give a better indication of where you are at. In no way am I attacking you I’m just thinking out loudly. Carbimazole is a horrible drug and can make you feel pretty lousy.
Do you have any of your blood results you could post for us to See what your levels are like ?
When you stop Carbimazole there is not an instantaneous result !
It takes weeks sometimes to feel the difference from being HYPER .. to “normal”
The body needs to use up the Hormone first and that takes time . It’s easy to recognise the feeling of “ coming down” from HYPER
If you come down SLOWLY from your first dose
Starting .....,maybe at 20mgs per day and halving every number of months till you reach a dosage of 2.5mgs
Then by the time you reach 2.5 mgs .. you would, likely and hopefully have a much more natural glide into feeling “ normal “
... and your body will recognise the slow process and continue on that path .
That would be the required outcome and for me , that is exactly what happened .
But ... before I’d achieved that .. I set out on a programme of supplementing Minerals , Vitamins and Nutrients to feed my Immune System and try to calm it down , to allow my precious Thyroid Gland to rest and to do it’s job efficiently and without interruption from my erratic immune system or anything else.
It has worked for me ...... and plenty of others too ...
the sooner we start supplementing and eating “clean “ fresh healthy food .....and drinking plenty of good, health giving water.... the better .
If your Thyroid Gland Is healthy and not diseased .. there should be no need to have it removed .. the outcome of treatment and supplementing can be , and is, successful for many to achieve a Euthyroid state ... and with careful monitoring.. you could have your life back ..
Yes thay are below, I think I need to change my my life style, I do a very visacal job on building sites with heavy lifting all day long hours and alot of the time by the time I get in as live alone to tired to cook so just order a takeaway, maybe I need to slow things down, we all have bills to pay and constantly working for extra cash is great but need to start taking my health abit more seriously I think,,
Hi there, I have graves disease and I take both carbimazole and levothyroxine, a treatment called block and replace.This is my second try at remission.I was taking my tablets for about 1 year and then you just stop them cold turkey to see what happens.Within 2 weeks I could feel my old symptoms returning so booked a blood test.My ft4 had gone up into the 60s when it should be between 9 and 20.I am now back on the treatment and ferling better.I feel well on the tablets.I don't know how long they will leave me on them this time before stopping them and trying again.I was hopeful I would be in remission and back to normal.I know I cannot have rai treatment as I have thyroid eye disease( something I learnt on here and my consultant agrees with).I will try hard to avoid a thyroidectomy but I haven't got to that stage yet.Wishing you well on your journey.
I know someone who was on block and replace for several years and she is now in her early 30s. I heard recently that she has had her thyroid removed last year and I am trying to find out how she is now. We did used to work together and I lost touch with her after I left work. I have been lucky because I am feeling ok at the moment but I do really need a blood test to check my levels.
Did you have your TRAb tested (the antibodies you have with Graves' disease) before you stopped taking Carbimazole? It's vital that this is very very low to show that you are in true remission rather than just euthyroid (when your blood tests are in range). I've been in range for a few months now but had a TRAb test done recently which showed I still have antibodies. My endocrinologist therefore told me to stay taking a low dose (I'm on 2.5mg a day now) until I'm in true remission. Some studies show that if you stay on a very low dose for a few months after you're in remission you have a better chance of staying in remission. If you haven't had this test I'd ask for it and if you're not in remission I'd go back on Carbimazole until you are. It's such a rough road isn't it? I still have symptoms and struggle at times. Good luck.
Hi, I did ask about having my antibodies tested before coming off block and replace the first time but my endocrinologist said it didn't matter.Obviously I csn see now that it does.Will try and press the point more before I stop them again.Hopefully that will be when all this covid business has settled down as everything is being done over the phone and it's more difficult to explain things properly.I haven't seen my consultant in person for I don't know how long but I understand the situation obviously.He never actually did my original TRAB test.I was with my son who was seeing another endocrinologist at another hospital and he could see how ill I looked and did the blood tests for me there which I thought was amazing.He said I'd need them for when I eventually got my appointment a couple of months later.Unfortunately he has since retired.I do wonder if it hadn't been for him would I have had the correct tests done.
I have never heard of it either my thyroid hasn't changed much in the last 10 years which is a relief. I was hoping she would provide us with more information about our thyroids burning themselves out because this is news to me!
Me too Lora.. I’ve researchEd Graves Disease for many years now, seen 5 endocrinologists and have a great friend in a top hospital in Canada who helps me greatly and had so much help on here ....and I’ve never heard that before .. BUT !! Who knows let’s see ..
I hope she comes back and tells us where she got the information from because I have been reading about Graves' for 10 years now and I have never come across this before.
Yes madge, not better judgement. I heard this on a health program on hyperthyroidism. The guest endo, mentioned it when he was talking about treatment options for hyperthyroidism. RAI, thyroidectomy. Most go down that route. For those who chose neither, he said many would eventually end up hypo and would still end up taking thyroxine.
This small nugget was of real interest to me. Over the years, I have heard people and even GPs talk about the thyroid burning itself out but never thought much about it till 2019.
I was diagnosed 2015, and till 2019, my thyroid panel results were always in range and stable. In 2019, I started to experience new symptoms. My TSH came back high, carbimazole was titrated down from 2.5mg per day to 1.25mg, and thyroid panel results went back into range, where they have been for a year.
My thyroid now requires less carbimazole to maintain in range. Does it go into remission eventually when I can no longer be on carbimazole? And from there, does it start moving to hypothyroidism?
Its still a work in progress. There's still the possibility that after stopping carbimazole completely, I could have a hyper relapse. From Jan 2015 first diagnosis to Nov 2019, it took 5 years for the thyroid status to shift. Perhaps these status shifts take time, so yes, time will tell. But this slow shifting, to my thinking, gives legs to the idea that the thyroid could very well be shifting towards hypo??
My apologies for the late reply. The email prompt went to another of my email folders so did not know u had posted.
Have you ever tried for remission? Sometimes when taking Carbimazole or PTU your T4 and T3 can become too low so you feel under active. The TSH can still remain suppressed and if a doctor goes by that like mine did you can become very unwell. I actually had to take Levothyroxine for a few months because you can become hypo after you stop taking the medication. Elaine Moore told me this was very common with Graves' disease. I actually think my TSH does not work any more and will always be low. Remission is obtainable and many people like me can go for many years of feeling very well. I still have very high antibodies and a multinodular goiter but I feel ok at the moment.
I’m sorry to disagree with you Ling and you May well know much more than I do on the subject of Graves Disease and the Condition “burning itself out”
I have probably had this condition of Graves Disease since childhood, as I now know and recognise symptoms I had as a little girl are most certainly caused by Graves and HYPERthyroidism , as is and was the case, in many of my Family members situations.
I’m a much older woman now and my disease shows no signs of burning its self out as you said in your FIRST response .
So .. I won’t hold my breath while I wait for this dramatic change in dynamics.
However, please keep us informed of any other proof you May have on the subject , as just saying .......
THE GUEST ENDO SAID IT ... isn’t really enough ...
That's fine madge. As I said, the endo mentioned "many" of those who do not get RAI or thyroidectomy, eventually end up hypo. He didn't say ALL would become hypo.
Like yourself, thyroid dysfunction runs in my dad's side of the family, and on hindsight, I've had thyroid disease symptoms since young but never recognised them as such.
DEVELOPMENT OF THE CLINICAL PICTURE AND THE COURSE OF THE DISEASE
makes mention of "spontaneous remission", "spontaneously hypothyroid".
Some patients become spontaneously hypothyroid, and in fact most individuals apparently cured of Graves' thyrotoxicosis demonstrate evidence of hypothyroidism decades later. Coincident autoimmune thyroiditis presumably plays a role in such thyroid atrophy. Since in some patients treatment of thyrotoxicosis is associated with the spontaneous reestablishment of thyroid homeostasis after a period of enforced reduction in hormone formation (by drugs, surgery, or 131I treatment), it is obvious that the thyrotoxic phase of the disease can be self-limiting.
I am not hypothyroid but I have experienced it after I stopped PTU. I actually feel really well at the moment and I don't think my thyroid has burned itself out.
I took PTU because Carbimazole gave me a rash. I asked Elaine Moore and she helped me a lot and told me I needed Levothyroxine for a short time so I saw Dr Skinner and he helped me to obtain a prescription from my GP. He was a brilliant doctor and I am sorry he is no longer with us.
I know of a person whose father had undiagnosed Graves and it burnt itself out and he is now on Levothyroxine for hypothyroidism.
I guess it's a question of degrees :
As I understand this he took a promotion at work - became stressed out and decided to quit the new position and actually changed careers - and worked part time for a while - and then just muddled on through until retirement, but happier in a less paid, less stressful work environment.
This only came to light as now his daughter is struggling with AI issues, and possible thyroid issues.
Thats why my endo mentioned it to me because I stopped taking carbomzole without them knowing, then i mentioned that I had stopped all my meds 2 months ago but I was felling very down, he sed the was a possibility that I have burnt it out and are hypo, sent me for bloods but all levels come back in range,,
So, after 2 months no no medication and no AT drugs your T3 and T4 are back in range - that's good then - isn't it ? It would be interesting to see where your Graves antibodies sit as this would be another sign that you may have ridden out this phase of the disease :
You may not be hypothyroid yet, and you may need close monitoring, but there maybe no need to take drastic action such as a thyroidectomy or RAI ablation.
5 month now iv been off all meds and all levels in range, yes it's good glad my 2 tt appointment last year got cancled due to covid, I'm still having regalre bloods taken, but also feeling all sytoms iv always had since getting diagnosed with graves, docs are suggesting that I may need antidepressants, but yes hopefully no drastic measures need to be taken, only proplem I have is all my bloods keep coming bk in range but still feel the same, but I will ask them to see were my graves anti body's sit, thank you
Hole body aching, heart rate jumps, tearfull, low mood anxiety like iv never had b4, very nevious I used to b very sociable but just don't bother with anything or anyone, I seem to dread everything, no appatight, my finger nail are failing off, it's just all seems to roll into to one from hour to hour
I recognise many of these symptoms and I'm with Graves but post RAI thyroid ablation and consider myself dealing with lingering Graves, thyroid eye disease and hypothyroidism.
There are a full set of symptoms of both hyper and hypo on the Thyroid uk website : though some symptoms do cross over into both camps :
I would guess you may still be dealing with the AT medication having blocked your own thyroid production and would organise regular T3 and T4 blood monitoring so to monitor this phase longer before jumping into any big decisions.
I strongly suggest building up your core strength of ferritin, folate B12 and vitamin D if these are not optimal as without inner stability and wellness you are building on shifting sands.
I like that phrase "lingering Graves". It's apt and describes that cross of hyper and hypo symptoms when one is euthyroid according to blood tests results. Hyper symptoms that never really go away, and the tip overs into hypo symptoms, this is exactly how an endo described having thyroid disease, that thyroid hormone levels are constantly moving along the spectrum between hyper and hypo.
My dad was in a similar situation. He had undiagnosed hyperthyroidism, we suspect Graves because of the huge weight loss and severe palpitations, and was never on any ATD. Over the years, the symptoms lessened on their own with zero treatment, seeming to indicate the thyroid winding down.
Ps. Re that lovely example u shared, for a condition like Graves, that sort of huge lifestyle change is just what is needed to manage the condition and live a healthier life.
Yes, I've given this a lot of thought and believe my Dad was with Graves :
He was medically discharged out of WW2 a few months before it ended and I was in the baby boom of 1947 :
He never went to the doctor and was difficult to live with - exceedingly angry and would turn on a sixpence. However after around 60 ish he became a big soft Teddy Bear and used to tell me to stop worrying about everything.
My grandfather pushed my Dad into the Boxing ring when he was 16 as he looked a big strong man.
My Mum said he came out of the Army looking like a rake :
In later life he put on more than his fair share of weight and looked very much like his Mum and sister, both of whom, looking back, looked hypothyroid.
A 11 I was with alopecia and undiagnosed dyslexia : The 11 plus exams made me very stressed and of course I failed all these quite spectacularly as my course work had me " top of the class " as I would practise my writing for hours and all all looked " copper plate " though nothing registered or went in - though I was always top for mental arithmetic ???
I felt I'd let down my family, I was ashamed and very upset.
I was a very slow child, compared to my brother, 4 years older, I was slow to walk, just slow in everything I think, very heavy, having to wear boy's blazers and shoes as my feet and body were too big for girls sizes.
I couldn't face being an accounts auditor for the rest of my life, as it was impossible to qualify as an accountant, as my reading and theory knowledge nonexistent and the postal course, of course, a waste of money until I learnt how to read.
It is funny you should say that because my mother hardly slept and was always very active. She had a lump on her thyroid which was removed and was benign so no further action. Every morning she was up at 5am cleaning the house and seemed to have loads of energy all the time. I am very like her and I do wonder if she had thyroid disease but years ago there wasn't the blood tests that are available now.
Could it be possible that the “undiagnosed Graves “..... Was in fact HASHIMOTOS Disease, which swings from HYPER to HYPO .. and ends up in HYPOthyroidism ?
That is common and to be expected in many cases, as I know from my own Family.
I think pennyannie has Graves' disease. Some people on this site have suggested I might have Hashimoto's so when I had my last ultrasound I asked the Consultant and they told me I definitely didn't have Hashi's because she had seen hundreds of thyroids with that disease. At the moment I feel very well and I believe I am in remission but it won't last forever unfortunately.
I have Graves and have had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicate with NDT :
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