Graves and Omg what a day!

[Tangora]

Hi all. I've never posted on a health forum before but I think I have nearly hit rock bottom today. Diagnosed with Graves 4 months ago and while waiting on an appointment for a consultant at my local hospital my Dr prescribed me with 20mg of carbimazol to be taken 4 times a day. My body just couldn't handle this and I was vomiting morning noon and night and to be honest was an emotional wreck. Had one face to face meeting with my consultant so far and as the appointment was 2 days after my last blood test and the GPS I didn't want to have another (I'm a total hospital and needlephobe) I got a frantic call back from her telling me not to take anymore of the 20mg tabs and she was going to knock this right back to 5mg once per day. After my second test at the hospital I got a call to say my levels are now borderline so continue with 5mg once per day and she will see me again in September. I will get my levels next time I see her and post them up.

Last month I also had a large painful cyst removed from the back of my neck that also had a large abscess under it so have also been on antibiotics before, during and after they was both removed and wasn't sure at the time if these meds mixed well with each other but for the last three to four weeks my body has just been painful and weak. Last week was a really bad week and spent most of it on ibuprofen, paracetamol deep freeze patches and my tens unit and was out of work all week.

What brings me here today? Well apart from from puffy eye (not Graves related I hope) ongoing aches, pains and feeling like an emotional wreck and tired all the time I just want to find out is this is the norm?

I recently and reluctantly got in touch with my brother to see if there's some sort of family medical history and rheumatoid arthritis, osteoporosis and vasculitis between my mum and sister (who is much younger than myself) but nothing else reported back yet. Took this info to my GP last week so will see if comes up with that.

Dr said last week stress could be playing a big part but I don't like to think of myself as someone who gets stressed but with a very difficult situation at work at the moment he may have a point. I had to leave there again today and have been bursting into tears on and off all day, intact I've been doing this since I got diagnosed a few month back at the slightest little thing if I'm honest with myself.

I simply don't know how much more of this I can handle, please someone tell me this is somewhat normal and there is light at the end of the tunnel.

T x

[Raventhorpe]

Hi tangora you sound like you've been through the mill since diagnosed, first of all things do get better once your on a stable dose of carbimazole. I think your doc put you on a far too strong a dose of carbimazole to start with, make sure you always get a printout of your results so you can see for yourself where your levels are and can post on here for advice. Graves can make you feel very emotional and you do get stressed out easily this will improve as your levels return to normal, it's a bit of a balancing act with the carbimazole too much can make you hypo and too little and you are hyper so best to keep an eye on your levels for yourself.m y advice is to read up on graves find out as much as you can, a good place to start is on thyroid UK site lots of info on there and if there's anything you don't understand or you want to know the knowledgeable people on this forum will help you.

[elderflower2016]

80 mg/day is quite a high dose to start with even if your thyroid levels must have been high when you were first diagnosed. It sounds like your levels dipped too low and they had to reduce your dose drastically. Having thyroid levels dip from too high to too low is not good and would account for the various symptoms that you had. Hopefully, you're now on the mend with the correct dosage. "Borderline" could be borderline low or borderline high - it would be good to know what they meant exactly.

Stress is believed to be a trigger for Graves' and the condition does make you anxious. It all gets better once you stabilise with the anti-thyroid medication. Eye symptoms may or may not be related to Graves'. One tip that I got quite early on is to take a selenium supplement as that can help prevent the development of Thyroid Eye Disease (TED). I'm not saying that you have TED, but do be aware that it can develop.

I'd recommend eating well (lots of fresh veg, good proteins) and taking it as easy as possible. It will all help towards your recovery and well-being.

[Tangora in reply to elderflower2016]

Thanks for your replies, I just found a letter that was forwarded to my GP in April with some numbers

March TSH 0.02 - fT4 34.7

April TSH 7.36 -fT4 13.4

As said last blood test was done at the end of May (not June "foggy head" kicking in again) and the consultant said she was happy with it but didn't give me any numbers and info hasn't been sent to my GP. A couple of the girls at work are underactive and did say I would e a bit up and down but I didn't expect this.

[humanbean in reply to Tangora]

A Free T4 of 34.7 is high, but not that high. Yes, you may well have needed treatment with carbimazole, but your GP over-reacted astonishingly! He put you on a dose substantially higher than the recommended dose in the BNF (British National Formulary), which as far as I'm aware is the doctor's drug bible :

bnf.nice.org.uk/drug/carbim...

It's worth keeping the link to the BNF. It's worth checking prescriptions to see what it has to say.

Always, always, always check the Patient Information Leaflet too. If you aren't given one by the Pharmacist, always ask. And if you want to look up the Patient Information Leaflet for other drugs you can find them on this site :

medicines.org.uk/emc/

[Ianswife]

I was diagnosed graves disease in May 2015 . T4 on diagnosis was 86 ( 10 - 26 ) . My god I was an absolute mess . I was exhausted but felt jittery all the time . I was irritable , highly anxious , couldn't cope with anything, weepy , sweaty and drove my car like I was a boy racer ! . My eldest child who was 16 at the time said that I was a nightmare to be around . I also felt like my legs were made from lead as i could barely get upstairs . I am pleased to report that I feel so much better than I did but not 100% and my endo informs me that I still have a long way to go . You will start feeling better eventually but it's certainly not a quick fix . I hope you start to feel a little better soon .

[Tangora]

It feels like something has finally snapped and it did, it's me. I have spent the last two weeks locked away from everything and everyone trying to put into words how I was feeling in between bouts of tears. Last night I finally broke and gave my other half my tablet that I have been typing these notes into and today he came to the Dr with me.

I have now have smashed into depression and this is really hard for me to even get my head round. I have been given seritraline and have been given contacts to speak to. When we got home there was a letter from the Dr I had seen last week who sent me for a vitamin d test and ecg.

Dear Ms.....

Your blood test shows your vitamin D level is insufficient. This means it is slightly low which is very common or people living in the UK.

It's not so low that you need a prescription strength Vitamin D table.

________________________________________________________________________________________________

It then goes on to tell me to get a low dosage tablet from supermarket or health store. It also came with some patient.co.uk print outs and I have been feeling everything printed under symptoms and have read online that vitamin d deficiency is often linked with depression.

I know other factors have played a part in bringing me down this low but the saying of "knowledge is power" has made me feel less paranoid that all of my pains and aches was... is... are psychosomatic.

So if you are feeling the same but feel you just can't talk about it just put it writing any way you can so those close can at least read it. It took me two weeks to do this but I got there and I'm now getting some help.

[Kellybean71]

Hi tangora, I'm a newbie. Saw your post and thought I should tell you my experience with cabrimazole. I was diagnosed with graves about 16 years ago. I was prescribed cabrimzole and was very allergic. Every joint in my body hurt so that I could barely move. It felt like I was run over by a truck and then the truck backed up and ran me over again! It took about a month of being off the medication before I felt okay again. I had a thyroidectomy and am on Levo now for many years and feel pretty good. Just wanted to say, you could be allergic to your meds.

Kellybean71

[bailey61]

Hi Tangora.... I too am a newbie and I do hope you have started to feel better.

I read what your post and it all sounded so familiar. Initially diagnosed with hyperthyroidism, I was prescribed Carbimazole by my GP and within the space of 8 weeks was really ill. Constant nausea, loss of balance, no energy, double vision, joint pain and fatigue actually meant I was virtually bedridden for about 6 weeks . I was diagnosed with Graves April 2015 and when I complained of no improvement was changed to Propylthiouracil in September, with a fairly immediate improvement overall - although when you feel so ill , ANY improvement is major!

I have recently had my medication halved as thyroid appears to now be stable and have had adrenal function tests and endoscopy to try and ascertain cause of some of my symptoms. My most recent diagnosis is CFS and IBS, so do be aware that many of these diseases are not only related, but share symptoms, and it may be that like me, the Graves diagnosis is masking other underlying problems.

Carbimazole is the first choice of medication for Graves as PTU is very toxic to liver and kidney function, but I certainly felt better on this. It may be worth asking if you can change.

I would love to say I feel fantastic - but it is all relative, and compared to where I was eighteen months ago, I am much improved. As my thyroid has stabilised, the tearfulness and breathlessness and panic/anxiety attacks have lessened, and without the other conditions, I have no doubt I would be even more back to normal.

I would just say that having been relatively healthy all my life, I too felt like I had been run over by a juggernaut and there were many days I seriously despaired that I would ever feel any better. Although it doesn't feel that way now, there is a light at the end of the tunnel and I have come to realise that I must accept my limitations and be prepared for the days when it is all too much.

I wish you well....