I have Graves' Disease, and have been on Carbimazole since May. I felt incredibly well a few weeks after starting Carbimazole, and felt that way until the last 4 weeks or so, when I gradually started to feel as unwell as I did before I was diagnosed - body aches, tired but having disturbed sleep, dry mouth, breathless when I walk upstairs, frequent weeing (!). I feel cold though, rather than far too hot, like I did before diagnosis!
I happened to have a medication review with my GP at the end of September, and she ordered a thyroid blood test. I had it done first thing in the morning, no biotin containing supplements taken for seven days before. The results are:-
Serum TSH : 3.75 mlU/L (range 0.27 - 4.20)
Serum free T4 : 13.6 pmol/L (range 11.0 - 21.2)
No T3 tested, I assume because TSH and T4 are 'normal'
I feel awful, and I am wondering if my Graves is in remission, and now the carbimazole is making me hypo? I have put in an eConsult to the GP (she requested I do this once the results were back) and I think I will ask her to refer me back to the private endo I saw (or just refer myself, not sure if I can do that).
I would be interested to hear people's thoughts!
TIA!
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BallyHi10
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Was Graves confirmed with positive Trab or TSI antibodies.?
You could equally have transient hyper (from autoimmune thyroiditis known as Hashimoto’s) and carbimazole hastened low thyroid levels.
How much carbimazole have you been prescribed? Has it been adjusted?
Graves tend to cause extremely high levels & doesn’t tend to settle so quickly.
Medics recommend carbimazole for at least 18 months, there’s a lot of research showing Graves patients benefit from longer term treatment. Although many try to rush lowering carbimazole.
Yes, TSI in April was 2.59 (no range given in endo's letter). I started on 10mg for six weeks, then bloods showed it was working so went down to 5mg a day, which is s what I'm on now.
I asked the endo if I could have Hashi's when I was diagnosed, but he said that I had had my hyper symptoms for too long (several months by then). He also said he treated people based on how they feel rather than just the numbers, so although my T4 and T3 weren't super high, I felt dreadful, couldn't function, walking upstairs raised my heart rate to 190 bpm ...
How long have you been taking 5mg when test taken?
It takes around 6 weeks for a new dose to show how levels will ultimately settle, carbimazole affects production of new hormones not existing levels.
Positive TSI ab is accepted evidence of Graves, but from your post 6 months again your levels are not typically high. It’s possible to have both thyroiditis & Graves and existing autoimmune damage means the stimulating affects is reduced as there’s less functioning thyroid to over stimulating. Difficult to confirm this as thyroiditis antibodies appear with Graves too.
Any continuous elevation requires treatment but you current low dose is rendering your FT4 too low & FT3 wasn’t tested.
If you believe you may be having hypothyroid symptoms discuss reducing to 5mg every other day.
You can still feel very unwell with elevated levels especially when they have suddenly risen.
Symptoms can also linger longer than what a blood test records, it takes longer to recover.
GP could have liaised with specialist to start & monitor you while on carbimazole. By making referral knowing it will take a long time and doing nothing your doctors is being quite neglectful.
I had a wait of 2 months. That was due to delay in miscommunication - I had been sent blood test forms from hospital but reception would let me book appointment as no point until appointment arranged. The hospital team were waiting for results before booking….
Fortunately the GP put me on carbimazole & propranolol as soon as diagnosed hyper & said if I don’t hear in 6 weeks let them know.
when I developed Graves I was started on carbimazole- 20 mg a day. I took that for four weeks and at my first blood test discovered it had made no difference. My consultant who I had never seen wrote to me to tell me to double up the dose. I did that - had no more blood tests and was very hypo by the time my appointment came up - three months from the start of my treatment.
I was treated with block and replace so once I started taking levothyroxine along with the 40 mg carbimazole I felt a lot more normal although every time I needed an increase in my levo I got hyper symptoms again. I thought I was becoming hyper but someone on here said I was probably needing more levo which proved to be right.
As PN asks - how much carbimazole are you taking?
I’m surprised you weren’t given an appointment with an NHS endocrinologist. I was amazed that I could be so ill and that even though I was taking anti-thyroid drugs in that time I had to wait three months for my appointment but looking back I think that seemed to be how it was done with my hospital - they started their patients on an antithyroid drug, waited until your bloods reached a certain point then added in levothyroxine.
Be sure to keep notes on all of your blood tests and all the drugs and quantities you are given. Read all you can about your condition and ask questions when you see your consultant.
I used to keep bullet pointed comments on how I was feeling day by day so that the night before I saw my consultant I could refresh my memory and tell them exactly how things were when they asked how I had been - otherwise I tended to say ‘fine’ which I wasn’t.
I was absolutely shocked that I had to wait for three months. My GP started me on 20 mg a day - then I waited. In my case the wait was ok. although I could have done with having blood tests sooner - well before I became hypo. My surgery file shares with our local teaching hospital so the consultant was in charge even though I never saw her in that time.
Sounds like your endo is titrating your carbimazole. That’s the other way to treat Graves. Treating Graves seems to me to be a long slow business.
Interesting that your consultant treats by how you feel rather than by numbers - I actually said to one of the doctors I saw (I’d waited for hours) that all they needed was my blood test results, they didn’t really need to see me. He was kind of shocked but he didn’t deny the truth of it.
I used to have bloods done a week before my hospital appointment and I always felt decisions were made before they even saw me.
Graves is an auto immune disease that can wax and wane throughout one's life and said to be driven by stress and anxiety, there is no cure, and Graves is poorly understood and badly treated by mainstream medical. for all things Graves - elaine-moore.com
There can be genetic predisposition with someone, maybe a generation away from you, with a thyroid health issue and something may have triggered your immune system to attack your body.
Graves can also appear totally ' out of the blue ' or after a sudden shock to the system like a car accident or an unexpected death of a loved one.
All the Carbimazole does is buy you time and the hope is that, given enough time, your immune system response calms down and your body resets itself.
The NHS generally allocate around a 15-18month window for treatment with an AT drug though the most recent research is suggesting the longer one stays on the AT drug and better the outcome for the patient.
Graves generally has a TSH stuck down at low suppressed levels like 0.01/02.
Looking at the above results your TSH is now moving into hypothyroid territory and with a T4 at just around 26% through the range I'm sure you are experiencing some unpleasant symptoms.
I find it strange that no T3 has been run as this is the most important of all the thyroid hormone readings and needs to be seen alongside the T4 and what your Carbimazole dose is based on.
When metabolism isn't running exactly right for you - too fast or too slow = hyperactive or underactive, the body struggles to extract essential nutrients through your food no matter how well and clean you eat, which can compound your health even further.
To this end I think it would be prudent to get your full thyroid blood panel actioned to include a TSH, Free T3 and Free T4 reading plus antibodies, inflammation and ferritin, folate, B12 and vitamin D.
If your doctor can't help you with this there are private companies listed on the Thyroid UK website - thyroiduk.org who can run the relevant bloods for you, some even offer the nurse home visit to draw your blood - so less stress for you.
Post the results and ranges in a new post on this forum detailing any drugs that you are taking and you will receive considered opinion.
Refrain from any supplements for around a week prior to blood draw so we can see exactly what your body is holding on to, and arrange an early as possible blood draw fasting overnight and just taking in water.
P.S. What were your initial blood test results to suggest Graves and presume the TSI result came later ?
I had Covid, which I recovered from up to a point, but I was left with palpitations, raised heart rate etc etc, which in fact was Graves -- when I was treated, that all resolved. I think Covid was the trigger for me.
I'm going to see what the GP/endo comes back with, and will look out my original results to post. TSH was 0.01 though, I remember that!
Original blood tests results. I felt absolutely dreadful at these levels, and had cut my hours at work, was hardly eating, struggled to do my job ... even though they're ''not that bad" (just waiting for someone to say that 😂)
if already hypothyroid and already on hormone replacement these results would be seen as ok if they needed to be where they are in order to be symptom free of hypothyroidism.
We all have our own set points as to where our T3 and T4 need to sit to be well.
Blood tests are just a snapshot in time, run behind symptoms, and just one form of acknowledgement of ill health. and thyroid dysfunction and thyroid thyrotoxicosis do appear to be known factors of Covid 19 .
Hopefully your Graves is mild and this the worst of the first, and hopefully the last phase of this poorly understood AI disease.
I was diagnosed Graves in 2004 and at my very first NHS endo appointment told I had to have RAI thyroid ablation the following year, as although I felt very well on the Carbimazole I was told it was too dangerous to stay on long term.
I knew no better and deeply regret this treatment, and believed I didn't have an option, and now manage lingering Graves. thyroid eye disease caused by the RAI and primary hypothyroidism.
Thanks to this amazing forum and Elaine Moore I started my learning curve, 10 years too late for me, but I do now self medicate with full spectrum thyroid hormone replacement and am much improved.
I read of other forum members who have been on a low dose of an AT drug for very many years and when life stresses happen, which they inevitably do, they just head to their medicine cabinet and restart the AT drug for as long as needed, to calm down their immune system response.
I hope you don't get into a situation where this is needed so please put it under your pillow for future reference : ncbi.nlm.nih.gov/pubmed/306...
I was told about RAI from my very first endo appointment and every time it was mentioned I said I was NOT having it. In the end after I finished my treatment I made an appointment with my GP (shows how long ago that was!) and asked a) if I could be forced to have it - No and b) could the hospital refuse to treat me - No.
I felt from what I’d read on this forum that hospitals want to ablate your thyroid so that they can get you off their books into the care (or lack of!) of your GP who may or most likely may not be able to keep you feeling well. So like BallyHi10 no way was I going to have RAI. One young endo actually told me I would not become hypo without a thyroid, then she held up her thumb and finger to show me how small the pill was! I definitely came under constant pressure to have RAI should I relapse.
I’ve since learned that many people take carbimazole for years, that research being done on a vaccination against Graves and now there is research that people ‘should’ be taking carbimazole for 18 months. I think in the past they stopped treatment too soon.
Totally agree but sadly back in 2004 I knew no different and being dyslexic I had always tended to trust those I presumed knew better than me.
Just wish Thyroid UK was around at my diagnosis and could have primed me with questions as I was totally compliant and believed doctors had my best interests at heart, and ' first do no harm ' meant something.
My Graves was triggered by an unprovoked attack by a man I employed as my assistant manager. It was planned as he waited until there were no witnesses, and told me so and then proceeded to physically threaten and verbally abuse me., and afterwards having to work through the company grievance process became very difficult and my company were as much use as a chocolate teapot.
I believe Project Daviad is a joint venture with European researchers and further funding is required before we are likely to see a vaccine for Graves Disease.
Yes, most recent research doesn't really put a time limit on treatment with AT drugs. With Graves. I believe it's more a question of the degree incapacity Graves presents with, as some people will undoubtedly go on to have a thyroidectomy but many more could achieve remission if given enough time on the AT medication.
I believe RAI 1-31 ' therapy ' treatment should not even be an option and withdrawn.
I don’t know what to say - what an appalling and frightening thing to happen to you, made even worse by your company’s complete lack of help and then ending up with RAI. I had a couple of very stressful events before I developed Graves too - nothing like what happened to you though.
2004 was a long time ago wasn’t it. In those days I don’t think people ever questioned their treatment. I was always brought up to put my trust in doctors or maybe it was just that back then I’d never had reason to question them. Now I’m afraid I am very, very cynical and it’s probably sad but I don’t feel I can rely on doctors to do what’s best for me. I feel as if they have their own agenda and you have to fit into it.
I was lucky too to find TUK very early on in my treatment - I don’t know what I would have done without it. I learned so much from the experiences of others agreed - RAI should not be used, doctors need to be prepared to give us hyperactive thyroid patients more time to recover. They say carbimazole is a nasty drug - I feel that there are a lot of nasty drugs out there that they don’t seem ti mind giving us for extended periods of time, in fact drugs that have made me feel a lot worse.
I read RAI is made from toxic waste and taken up by other glands and organs within the body and there is around a 25 year window from ingesting for the manifestation of other potential side effects but who knows if it's that exact. it can be a very slow burn.
Elaine Moore is in recovery this past year or two, from I believe some form of stomach cancer :
I believe my saliva glands, and whole digestive track and mucous membrane were damaged by this toxic substance. I received no answers from the hospital where I had all my treatment and so started researching and kept getting redirected to the MacMillian Cancer Care website where I read of my symptoms in the aftercare section for patients post head and neck cancer treatment. My dentist who suspected Sjogren's simply mumbled away when I said I had had RAI treatment some 8 years earlier.
At the end of the day the thyroid is the victim in all this and not cause as the cause is one's own immune system attacking one's own body.
Given enough time the immune system can hopefully calm down and reset itself and how to calm down one's immune system response, will be unique to each person, as is their Graves Disease journey , but definitely worth looking into.
Graves is considered life threatening if not treated because it attacks the thyroid, a major gland and the body's engine. Mainstream medical have no answers for this AI disease and believe by removing the target of the attack, the thyroid, the health issue is sorted.
To a degree it is from the hospitals stand point - as it's believed hypothyroidism is better treated in primary care, so the hospital despatch you back, very much like a pass the parcel, as ' treated ' .
The reality is this can just compound the problem as we know treatment for primary hypothyroidism is sadly lacking, plus you will still be on medication for life, have Graves Disease and be ruled by a TSH reading and not your T3 and T4 blood test results, which you will have to pay for, and likely side lined as you become your own best advocate when the system lets you down.
Knowing what I know now I believe I inherited Graves from my father as i've been hypothyroid for as long as I can remember and just thought it normal as I knew no different. I now read there is such a thing as Graves/Hypo and believe this is me as my TSH never rose despite many hypothyroid symptoms, and no doctor ever looked any further and I got the usual offer of anti depressants and felt it was all my fault.
With Graves Disease you can have either blocking or stimulating antibody interaction at any one time.
It can be a roller coaster of symptoms depending on whether blocking or stimulating antibodies dominate -
and there are also periods of relative normality when both these extremes of symptoms balance each other out with you feeling relatively ' normal ' for you.
Yeah that's odd I have graves and was referred to endo, you saw a private endo but how come the GP didn't refer you to the NHS endo?
As far as I am aware endo look after this so if the GP is just going from one private appointment you had I would ask to be referred. Graves does need more monitoring, like I was on the meds 12 months and now been med free since start of the year but my endo nurse reviews every 8 weeks and still says she cannot discharge me back to the GP until she is confident I am in range enough.
I also saw you mentioned they hadn't due to wait lists? That's wierd once the GP refers to endo they look over the info they then decide whether they will actually take you on, in some cases they may say the GP can monitor but when overactive they are more likely to take you on. I remember mine took a month or so to hear from the endo at the hospital it can be a post code lottery BUT at least once referred even if is up to 3 months at least it is in the process. Trouble is now you are in range it may be more difficult, but your TSH is now higher my endo says a nice number is around the 1 (So bet 1 -2) your GP really can get advice from endo for you they call them for advice, your GP sounds awful
I have private health insurance, I CHOSE to go private! I got to pick my endo, too. I'm sure my GP would have referred me on the NHS I just don't know the mechanism for that, and it's not relevant.
Ah that makes sense that's so great you have insurance, I think the point I was making was that the private endo should be monitoring so I'd contact them! Once you are under an endo they normally like to send you for the test every 6-8 weeks and they have more control mine always gets the T3 and T4 tested, you should have more luck with the private endo than the GP
(GPs are not that in the know especially with the overactive thyroid, normally if hypoactive the GP can monitor but most of the time when going overactive the endo team deals with it more than the GP)
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