It's been a while since posting on here and having been diagnosed with Graves over a year ago. I was doing ok, in range and stable with alternating days on 5mg and 10 mg.
After a series of issues with the endocrinology dept at the hospital, an inappropriate clinical secretary (long story), missed, canceled, and incorrect appointments by the hospital(not me), and also having to constantly chase my results and escalate to pals I finally had a great routine of 6 weekly check-ups with my doctor.
Then my doctor announced she was leaving and another doctor took over.
All the problems of having to chase them started again but this time the secretary decided she would develop a really bad attitude and was blocking me from having communication about my results. Eventually, I went through pals and was able to talk to the new doctor who said she would see me every 8 weeks.
I didn't get a follow-up call as I normally do to discuss my results so chased again as my levels change so easily and this time I knew something wasn't quite right with me as I was starting to feel low energy.
Eventually, after stressful interactions with the secretary, she sent me a snotty email after a couple of chases saying my results would be posted shortly. So no phone call from the doctor but I got the results:
October results from Endo.
FT4 - 12.7 pmol [10.5-25]
FT3 - 4.3 mU [3.1 -6.8]
TSH - 4.59 mu I think the top range was [0.27-4.2]
She put in the letter I had gone slightly over with TSH and that i was to stop alternating and just keep to 5mg every day and to follow up in 3 months. I was a bit taken aback a to why suddenly I'm being seen in 3 months time when I'm obviously not stable and my previous doctor had said I need to be seen regularly.
She also stated she would do my antibodies but I have not had labels for this and only for the actual thyroid.
About a week after receiving the letter my hair started to fall out and thin and I felt so fatigued so I emailed the hospital stating it was urgent and I needed to speak to someone . To this day (6 weeks later) I have not had a reply and ended up talking with my GP. My GP put me on 200m iron tablets as I'm on the lower end ferritin-wise and arranged for another thyroid test to be done in 5 weeks' time and the results I have today are below:
Current results from GP.
Ft4 - 11.2 - [10.5-24.5]
TSH -10.2 - [0.27-4.2]- way over
FT3 not measured as GP says they don't do FT3
You can see my TSH has doubled in about 5-6 weeks on just 5mg and my FT4 is just hanging in the bottom range. I feel tired and have no energy. Totally wiped out most of the time and best of all the clinical secretary feels like she is blocking my communication with the endocrinologist.
My GP is emailing the hospital urgently and told me to come off carbimazole altogether.
The worst bit of all of this along with feeling ill is I told my GP I would also chase this again today and when I spoke to the secretary, saying I had no response to my email that I sent 6 weeks ago, she went off on one by shouting at me and when I asked her to stop shouting she wouldn't. So I have had to make a complaint to the hospital. 😕
I'm actually worried I'm fluctuating between Hashi and Graves.
Could 5mg cause my TSH to rise so high in such a short time? I'm hoping coming off carbimazole is the right decision.
Any opinions are really welcome.
All the best and thanks
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epixme
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Hi there and thanks for reply, yes I had my trab done for confirmation and a thyroid scan that confirmed vascular issues consistent with graves is that side was confirmed. I was initially diagnosed with a severe case of Graves and fortunate to get my diagnosis at the time. My ferritin was tested recently and was 33 I believe hence why I have been out on iron tablets, but I do need to get my other vitamins tested I do agree. I have had celiac test at the time was initially diagnosed but came back negative although I was gluten free so would not have been conclusive and I am gluten free to this day. I am just concerned why am I suddenly just moving towards a state of what I think is hypo. I’m planning on using my own thyroid test with monitor my health to get my ft3 rather than wait another 5-6 weeks.
The only reason I’m worried is that about 5 years ago I lost my hair in a similar fashion with similar symptoms of fatigue and hair loss and then it grew back. I have my next blood test end of Jan, but my consultation is not until mid feb. This would be my first official consultation set up by letter since I was first registered with the hospital . All my other appointments were mismanaged and either cancelled, missed by the consultant or set up incorrectly. My previous endo decided to just call me for a quick call, unofficially every 6 weeks to tell me my results which kind of worked at the time but I have never been able to have a proper conversation about my diagnosis or been able to tell them I have had symptoms like this in the past.
Thank to for replying again. My hair has actually calmed down a bit since the iron 200mg twice a day for 6 weeks, so it does sound like that’s the culprit and that being on the low end of range (possibly hypo now given my tsh) that all of this has happened. I just hope my endo calls me soon to confirm stopping carbizamole is the right action. To be honest I trust my gps advice more than I trust them at the moment. I’m taking 4000mg of vitamin d and was taking thorn basic b but can’t get hold of it anymore so will search for another brand. I’ll definitely come back once I’ve done my thyroid test and vitamins with monitor my health. Thanks again for all the useful info. 😊
Thorne is currently difficult/expensive to get hold off
SeasideSusie recommeded this one
If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
what you need to factor in is that with Graves you will have both stimulating and blocking antibodies - and throughout this first phase of the disease there will be periods when these two extremes of symptoms vie for control with your symptoms fluctuating and there will also be phases where you feeling relatively ' normal ' for you, as these two extremes burn each other out.
It can be a bit like being on a roller coaster of emotions and symptoms and your body totally exhausted by this tug of war of the Graves antibodies.
Even if you do have Hashimoto's, Graves is considered life threatening if not medicated and takes precedence.
I too was diagnosed with alopecia but when aged 11 and sitting the then 11 plus - needless to say I failed - undiagnosed hypothyroid and dyslexia and left handed to boot !!!
Please keep your ferritin, folate, B12 and vitamin D maintained at optimal levels as these just tend to nose dive when metabolism isn't sitting quite right for the individual.
Rest, and be selfish with your time and try and find ways to relax your mind and body as you go through this first phase of this disease.
👋 and thanks for the reply and that’s a really great way of putting. I feel like I’ve been on the biggest rollercoaster ride of my life. Also sorry you went through that. Losing hair is so stressful and scary 😟 and not having it linked to anything eg thyroid just adds to the frightening experience. At this point though at least it’s cold and I have hats. I will definitely keep up with vitamins and try and rest. I’m out of work and studying at the moment for a new career but I’ve accepted I need to slow down because I don’t feel up to it. As I mentioned to slow dragon the only thing that’s really worrying me is coming off carbizamole but I don’t think I have a choice right now. 🤷
All the Carbimazole does is ' buy you time ' and puts you in a holding position while we wait for your immune system response to calm down -
The AT drug simply blocks your own daily thyroid hormone production and the most recent research is suggesting that the longer the patient stays on the AT drug the better the outcome for the patient :-
However the NHS generally only allocates a 15-18 month window with the AT drug as the NHS is time poor and hospital targets and O/P waiting list times need to be met.
The NHS then suggest the invasive options of either a thyroidectomy or RAI thyroid ablation as then they see the case closed for them as you are despatched back out of hospital into primary care where, I'm afraid, doctors seem ill equipped to understand your future heath issues.
Graves is a poorly understood and badly treated AI disease for which there is no cure.
Please read up on Elaine Moore and look to yourself to become your own best advocate.
Irrespective of where your T3 and T4 levels may sit - there is no point coming off the AT drug if your antibodies are still raging - make sure these are run before taking or making any decisions,
Then I think you're right, what I might do is compromise and take 5mg every other day until my endo decides to call me. At least I'm still on a dose then. One good thing she did put in her letter was that I should be on carbi for another 18 months so that would be nearly 3 years so I won't let them try to push me in a direction I don't want (ie thyroidectomy or radio). I was also supposed to have an antibodies test and it was in my previous to last letter, but they didn't do it for some reason so another thing to discuss with the endo if they come back to me. Thanks again for the advice etc.
I had a good sleep on it last night and decided to stop panicking and take your sound advice and continue with the 5mg. Will get PALS involved next week so I can speak with a doctor. Thanks for all your advice & support.
Your treatment sounds very poor and I can’t understand why the dept secretary should be so rude. That is uncalled for.
I had Graves’ disease back in 2012. I started on 20mg carb and after four weeks had bloods done. Obviously 20mg wasn’t enough to make any change to my levels so I got a letter from my endo telling me to double up on the carb.
When my appointment came round - exactly three months from when I started the carb I had bloods done a week before I saw the endo. By that time I was massively hypo - not surprising considering the amount of carb I was taking.
At my first visit I had all of the forms of treating graves spelled out and I was told my hospital treated with block and replace because it was the fastest way and treatment would take a year - which it did - exactly a year.
So I started with levo being added to the carbimazole.
By my second visit my hair was falling out in handfuls, I had started getting what felt like hyper symptoms but by that time I had found this site and someone told me I was probably needing an increase in my levo which turned out to be true. Anyway when I told my consultant about the hair falling out she said that my body had bern on a roller coaster ride having been so hyper - I was off the scale - and then having been so hypo in such a very short time. That turned out to be the case and eventually my hair stopped falling out.
Block and replace sounds a strange sort of treatment but for me it worked and I felt that it gave us more control over my treatment. To me it is easier to increase levo than to titration down on carbimazole alone - but that is just my personal opinion.
As for blood tests - I gave up on the NHS and now do regular Medichecks hime finger prick tests to check up on what my thyroid is up to and how my vitamin, mineral and antibody levels are coming on.
Could you transfer to a different and hopefully better endo? I would have thought (but I’m definitely no expert) that you really ought to be seen or at least have your bloods checked more regularly than is happening now.
Its really not been the best experience, having to deal with some many aspects of poor patient care and fighting to get the correct treatment plan and meds has been a nightmare if I'm honest. I wrote an official complaint email yesterday after speaking with PALS who agreed that this was the way forward. I've complained about the secretary and the issue of why my treatment has changed from 6 weeks to 3 months and against the advice of my previous doctor (who probably left because she had had enough). I'd already raised various issues 3 times with PALS. I do understand they are under considerable stressors, staff leaving apparently and cuts but I have realised that I need to be selfish or I won't get treated so the secretary probably thinks I am a pain in the *** for chasing and complaining about them all the time. No reason for her to shout me down though.
Oh sorry the hair loss happend to you also. It's such a nightmare and glad it recovered. I think you are right, it seemed to start happening when my TSH rose (very rapidly btw) . I wish my doctor would put me on block and replace but I've yet had an opportunity to discuss as an option. You never know I might be heading into remission but I need to find this all out through tests and they have yet to test me even though it was on my letter previous to my last to do so. Private tests have to be the way, I have a thyroid test with me now, just got to wait for the right opportunity with all the postal strikes. I like the idea of swapping hospital, before I thought well better the devil you know, but now I don't think I have anything to lose changing over. I think I'll discuss that option with my GP, thanks for the suggestion.
You’re right - you have got to have your bloods tested regularly to know how your treatment is coming on.
If you are going to swap hospital then it might be worth contacting TUK for their list of thyroid patient friendly doctors and try to find out how they choose to treat Graves.
We changed out family doctors after being with that practice since 1983. Basically the original doctors retired then the new ones were taken over and left and their replacements were really so awful we’d just had enough. Turned out the devil we knew definitely wasn’t better and we’ve got nice new doctors who see patients face to face. So good luck with it all.
I actually don't think I will have much luck going forward now my endo has changed. Such a shame as my last doctor was brilliant tbh and went against the system they have in place. I've just got the list from TUK. I looked at the fees and don't think its something I can afford right now so unfortunately, I will have to stick with NHS. Thanks so much for the luck and advice
Sorry to hear your treatment falls short of what you could reasonably expect. After 7 years on BR for graves and like you flip flopping hyper/hypo and having to be my own advocate this is what I have learned about my situation which may be relevant for you too :-As pennyannie says the latest evidence is to use ATD for longer even 10 years to increase chance of lasting remission. You cannot rush things - slow and steady is better. You have only been treated for a year and are now hypo on 5 mg. CBM. According to Elaine Moore 20% Graves patients go hypo which can be temporary or long term. From Tania Smith
We learn we can become hypo from our antibodies changing from stimulating to blocking dominating. How do you now move forward. Your GP says stop medication. Maybe , but this does not fit in with my slow and steady approach. If it were me I would stay longer on the 5mg. and experiment with adding in some Levothyroxine but you will need monitoring to find your sweet spot. Do keep notes of all the bloods and symptoms at each adjustment to help you move towards feeling well.
Thank you for your really useful info and all of it makes real sense to me. Although I was going to do every other day on 5mg but decided to just drop it to 2 1/2 mg daily until I have my conversation with my endo and whether they will introduce Levothyroxine and I can go back on 5mg. I don't know if this will materialize before Christmas as I don't know what urgent means to them and so far they ignored correspondence I sent 6 weeks ago about this. I'm not even sure she will entertain me taking Levothyroxine but will have to see, all I know is I don't think I can keep feeling like this as I feel dreadful. In the past, I mentioned BR to one doctor there and he categorically said no. I'll get her to look at taking my antibodies and suggest Levothyroxine, who knows when that will be though.
I'll get her to look at taking my antibodies. This MAY show if your antibodies have reduced but can also leave you confused. If you do have blocking TRAb dominating and causing hypo it may still be high as the TRAb test measures both blocking and stimulating ABs. You would also need to have TSI measured and showing low in conjuction with a High TRAb. You are unlikely to have your TSI measured. You can only focus on what you know and that is that you are definitely hypo and the only solution is to try some Levothyroxine. You think your doc. might not sanction this. Suggest you ask for a trial to see if it alleviates your symptoms.
Im going to go with that approach and ask for a trial. I was feeling pessimistic yesterday but going to take yours and pennyannies advice and stay on 5mg until I've spoken to someone at the hospitial. Thanks again for your invaluable info/advice etc.
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