Graves' disease and Supplements, will they help??

Hi again jan.h

How long have you been on Carbimazole?  I've been on it for 2.5 years now and for the first 12/18 months I had terrible itching from head to foot, horrendous leg and foot cramps at night and couldn't believe how much hair was coming out when I brushed/combed it.  I'm relieved to say that those 3 symptoms have passed (touching wood as I type !)  I have bags under my eyes and I have gritty, itchy, tired eyes - just had a 3 week bout of Blepharitis luckily only in one eye, which was bad enough - so I too would be very interested to hear what drops/ointments patients use to keep their eyes moist.  Regarding supplements, after reading many posts on this forum and another I am a member of I went to Holland and Barretts and bought every supplement recommended !!  However, after taking them all for a week or two I decided I would be better asking my GP to do a blood test for Vitamin and Mineral defecieny (B12, Calcium, Ferritin, Folate etc).  The only Vitamin I was deficient in was Calcium so the GP has given me a huge dose to take for 8 weeks and then a smaller maintenance dose for life.  Some patients have said that their Pharmacist (note not GP or Endo - sadly and annoyingly I have had NO information from either of them regarding ANYTHING) recommend that if you are taking Carbimazole it is wise to take Vitamin C too - I take a slow release 1000mg tablet every day (when I remember ).  I had the Vitamin/Mineral blood test done as I thought it better not to fill my body full of things it really didn't need, so I now have a cupboard full of "all sorts" that I don't need.

I don't sleep very well at night either but find that I do need an afternoon nap, my energy level which isn't great anyway tends to slump around 2pm.  I also have a goitre and nodules on my thyroid.  I tend to get a lot of colds/coughs and am constantly trying to clear my throat.  My weight (as mentioned in a previous post to you) has remained the same after a little weight gain, even though I still seem to crave sweet things which I never used to, apart from sugar in my tea.  Is that the body needing the sugar for energy, I don't know ?

It's certainly a terrible condition and made worse by the fact that the medical profession "forgot" to tell me it was a life long condition and just how serious it was.  I just assumed at diagnosis, that I take some medication for a couple of months and I would be back to normal because NO-ONE told me otherwise !

Hi jan, yes I had had many symptoms for a long time before I plucked up the courage to go and see a GP but it had come to the stage where I thought I was going to have a heart attack because my heart was racing so fast and so hard it felt as though my heart was going to come through my chest.  I couldn't walk more than a few yards or go up the flight of stairs to bed without getting breathless and hyperventilating which then obviously caused me to be anxious all the time.  That together with racing, mad thoughts when I went to bed and therefore couldnt sleep although I was totally exhausted.  I had an intolerance to any heat, including just the steam from the shower, shaking hands, loss of weight, muscle weakness - the list was endless.  The GP sent me for a blood test, I was called into the practice the next day for the results (hyperthyroidism) given 40 mgs of Carb to take and awaited an appointment to see an Endo which was about 8 weeks after.  The Carb certainly calmed down some of those symptoms (racing thumping heart beat).  Inbetween diagnosis and the appointment to see Endo I had another blood test and had gone Hypo so was instructed to stop taking the Carb until my appointment with Endo.  When I saw him he wrote in my notes "Thyrotoxicosis" and started me on the Block & Replace treatment which is Carb and Levothyroxine.  Was on that for about 20 months (during which time I was still having anxiety, breathlessness etc but not as bad as before).  After 20 months the GP in her infinite (NOT) wisdom decided to take me off both meds to see how my thyroid reacted, despite my complaints that I still wasnt feeling ok.  About 10 days later I experienced a thyroid crisis when all symtpoms returned together resulting in me collapsing - the worst experience so far !  I was put back on Carb and awaited another appointment to see Endo - again I went Hypo after a few weeks and had to be given Levothyroxine again.  Just recently (as per my earlier post) I have reduced my dose of Levo and I am feeling better with regard to the anxiety/panic/breathlessness and I now await to see the Endo on 4th April.  I didn't find out until just a few months ago (October 2015) that I actually have Graves Disease/Hyperthyroidism - and I only found out that I have Graves with anti-bodies because some patients here on this forum suggested I had it and to ask my Endo, unbelievable that I had never been told but then none of them, GP's or the Endo have EVER told me ANYTHING about the condition.  

The only advice I can give you is to rest as much as possible when you can because trying to push yourself and that's mainly to please others because you feel people think you are just being lazy, doesn't help YOU.  Try to avoid stress (very difficult) because any stress is a trigger.  Find out as much as you can about your condition by searching on all relative sites, do your own research and ask as many questions as you can when you see your GP/Endo.  Tell them how you feel because THEY treat you only by looking at your blood test results which may show that they are in the "normal" range but if you don't feel well at that range then you must tell them.  It's a struggle and they may well try and push you towards RAI (like they have with me) or an op to remove the thyroid but I'm not being pushed into either unless it becomes absolutely necessary.

Be kind to yourself is the only way forward !

My T3 levels were 30.8    T4 41.    TSH.  0.01

thyroid antibody level 971 ku/L

now my T3 is 23.1

TSH 0.01 mu/l 

im on 20 mg carbimazole 

my endocrine guy says Graves

my GP thought Hashimotos 

i. Feel rotten 

weight and energy up and down

im taking Complex B vitamins and Selenium, diet with Berries , Seeds and fish.

my glitter is tight and still inflamed and my eyes get a bit blurry and watery during the day.

is my lack of sleep changeable by taking my dose ,after in the evening? I take 10mg mid morning, 10mg late afternoon.

any ideas? 

Thanks x

Sorry, meant goitre not glitter!

Ps

i REALLY  REALLY itch

and get very constipated 

any help here??!!'mm

Glitter is a much nicer word than Goiter though

I've never been advised to split my 40 mgs of Carbimazole, so I take both 20 mgs tablets in the morning between 9 and 10 am and take my Levo at about 6am - I keep the Levo at the side of the bed and take that very early because apparently it works better on an empty stomach, so I can have my cuppa straight away when I get up around 7.30am.  I don't sleep very well and haven't done since I started with this nasty condition.  I can't remember the last time I had a full nights sleep - definitely over 2.5 years ago when I was first diagnosed and as I was having all sorts of symptoms prior to that for a long time before I went for a diagnosis, I probably wasn't sleeping well then either !  It takes me ages to doze off and I wake several times for all kinds of reasons before I get up.  Sometimes I'm too hot or too cold, sometimes but not often these days I get leg cramp or a burning/freezing foot sensation.  It's a wicked disease !

Along with the itchy/gritty tired eyes, I also have a strange double vision - it's from top to bottom rather than side to side i.e. a "o" looks like an "8", many Graves sufferers have this and take Selenium and eat Brazil nuts (2 or 3 a day) and have said that this helps.  Unfortunately, I don't like Brazil nuts at all but have a Vitamin C effervescent drink which contains Selenium.

I also suffer with constipation but always have had rather sluggish bowels.  Many Hyper/Graves patients have the opposite complaint.  I don't think having to take tablets of any kind helps this, so I have a spoonful of Lactulose at night - might be worth you trying that or sometimes I eat a few tinned prunes !

I don't suffer much now from the itching but have read on here and another forum I am on that asking the GP for an anti-histamine can help.  Check with GP.

When first diagnosed my anti-body TRabs were 141 and TPO anit-body of 403 - some patients on here and the other forum have suggested that because my TPO anti-bodies are so high, I could possibly have Graves AND Hashimotos running in tandem (just what I need) so when I see my Endo on 4th April, I will have to ask him about that - as NOTHING is ever forthcoming from either GP's or Endos unless I ask !!

Christine