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Hello from England
” title=”Smile” /> I’m very happy to have found this forum and reading your posts has helped me the past couple of days, thank you.
I was diagnosed with GD August this year after being treated for hyperthyroidism for 6 weeks on 15mg carbimazole daily. This was after being treated for anxiety and depression (again) from August 2010…though my anxiety subsided a little initially with treatment many of my symptoms remained, 2 visits and many months and symptoms later I was sent for the thyroid tests. I have now been on block and replace therapy for 6 weeks (40mg carbimazole and 75mg thyroxine daily) and am due to see my specialist next Wednesday, first time since changing treatment.
I don’t know whether this is still my hyper-head or I’m justified in thinking my levels aren’t being monitored closely enough, it’s been approx 2 months since my last blood tests…??
Also, I (perhaps naively) thought once I was on the new medication I would continue to feel better…when in fact I feel worse at times, particularly the past couple of days. My concentration level is shot to pieces again at work, I’m extremely weary and low, I ache (mostly in my arms…even seemed to struggle opening the post this morn) and I awoke last night and could hardly stand from dizzyness, my head continued to spin when I lay back down to such a degree I felt horribly drunk and nauseous. I’m finding it really hard to explain how I feel to anyone and I also feel like I’m making excuses for myself…especially around my work, I feel a lot of guilt. I’m left to my own devices at work and have a trusted position within the Company, I feel awful that I have no motivation or concentration for any length of time. I came in late today as I was worried about driving because of last nights dizzyness and I’m considering leaving early as I’m getting absolutely nothing done. I ache and feel very sorry for myself!
Moan over! Thanks for reading.
Catherine
xThanks Kimberley, for your reply and welcome
” title=”Smile” /> . I’ve been avoiding calling my doctor, trying to hold out till I see my specialist next week…feel like I’ve been at the docs more than I haven’t this year and worry too much about what people think of me. Sounds silly writing that down as what’s more important than our health. Took a day off work today and feeling bit better for it. Will call the doc if feel like I’m slipping again before my appt Wednesday though. Feel a little less mad for hearing this can be a 2 steps forward 1 step back process ” title=”Smile” /> xHI Catherine
I’m also in England and being treated in London. Not sure where you are? Without wishing to scare you, I really identify with your post. You most likely don’t have anxiety and depression and probably never did, you most likey have had GD humming along in the background for a lot longer than you think, well before it got a doctor deciding to run a set of tests.
I am due to have total thyroidectomy in the next couple of months. Prior to that I was following some bad advice to persevere with ATDs aiming for remission, when in my case remission was not possible as my thyroid had already been damaged beyond repair by antibody attacks.
I realise now, particularly dealing with GPs and the NHS that I have been rather naive. I am not saying there are not brilliant doctors out there, because there are, but GD is still not brilliantly understood or treated, partic in the UK. Not to be doom and gloom but you are probably going to have to advocate quite strongly for your own care. I also suggest doing your homework on endos and finding one that knows about GD and is not a diabetes or hypo specialist.
My suggestion would be look on the British Thyroid Foundation website (personally I found the charity itself not great, and too in awe of doctors to be anything other than a bit useless to be frank but make your own mind up) and look at their booklist and get yourself on Amazon pronto and get your head around what you’ve got, and the really big thing to understand is normal reference ranges. Work out how your thyroid works and get your head around the TSH, T3 and T4 feedback loop (incidentally they need to be testing your T4 and T3 everytime – BOTH – my T4 never went out of range, my T3 was toxic, and my TSH remained suppressed for over a year).
The UK has the widest set of normal reference ranges so doctors tend to declare us ‘normal’ even when we are expressing and exhibiting symptoms that make it obvious that we are not NORMAL and that in other countries would declare us ill. You then get into my situation where it’s pretty much ‘computer says ‘WELL’ now stop being a naughty girl and start acting well, cos the tests say you are well, so you must be well’. And so I say, ‘but I’m not well, I’m really ill, please listen to me’ and then they say, ‘ah but your results say ‘normal’ and there’s a history of anxiety and depression on your notes, so we’ve cured you and you are crazy and it’s all in your mind’. It has been THE most frustrating thing ever!!!
I was finally seen by a consultant endocrine surgeon at a large London university teaching hospital (privately, off my own back again!!) who took one look at me and declared me dangerously sick due to the INFLAMMATION IN THE GLAND not just the hormone levels (remember that last sentence!!) and told me I’d been undiagnosed and untreated for at least ten years whilst a bunch of doctors kept trying to send me away with antidepressants / hysterectomies / polycysic ovaries / chronic fatigue blah blah blah!
I realise now that the odds of achieving remission for GD are slim (some people do, and they are on this forum fit as a fiddle) and for people like me, where it’s been untreated for a long time, there is no hope of getting better or ever feeling well on drugs. My thyroid itself is toxic, it’s not just my hormones, so either killing it with RAI or taking it out is the only way. I so wish I’d known this at the beginning.
Block and replace, as I understand it, was first developed in Japan and worked well there but on digging a little deeper it seems that the secret to its sucess was close monitoring. Ideally at this stage you need fortnightly blood tests in my opinion. Most block and replace as run in the UK fails. Relapse rates are high. Sorry.
I’m sorry if that is a negative post but turning it around to the positive. At least you have a diagnosis. At least you are asking questions. At least you are online and you found this brilliant forum. At least you know you are not crazy, or that there is anything else wrong with you, you have Graves. You most definitely are NOT making excuses, this is a deadly serious life threatening illness that impacts (and will have been impacting you for a long time) in every area of you life, mental, emotional and physical. If you are seen at the hospital, you might be able to ask about occupational health speaking to your employer whilst you are undergoing treatment.
I really hope I haven’t overwhelmed you. It’s a lot to take in and of course you are not me, your road might be totally different. But forewarned is forearmed as they say!
Best wishes
Rebecca
xHi Rebecca
Wow, just read one of your other posts about questions to ask your surgeon…sounds like you’re having an exceptionally hard time at the moment. Big hug to you, hope you get all you need from your appointment next week with the surgeon.
Thanks for your support, I really appreciate it. I find it comforting somehow knowing you’re relatively nearby…that there is someone in the UK going through similiar experiences. Having read other posts on the forum I can see how supportive everybody is of each other here, I’m so glad I found it. I can’t explain myself properly to my family and friends, or when I try to it sounds weak in comparison to how I actually feel, if that makes sense. Though they mean well, when someone comes back with "yes I feel that way sometimes too" I find myself getting really angry…no doubt angrier than I would if I felt well by all accounts; I’m pretty sure I’m a sufferer (as are those on the receiving end) of the Graves rage I’ve heard people here talk of.
My endo’s secretary contacted me yesterday, to confirm this evenings appointment, and arranged for me to pop along for blood tests last night…the results should be back in time for my appt today. I took more notice this time, they are checking my TSH, T3 and T4 levels and have been doing so since my first blood test. I’m going to ask for a copy of all my results to date so I can gain a better understanding of what it all means and exactly where I’m at.
I’ve written a list of everything I’ve been experiencing as I know I’ll forget otherwise…or do my usual playing it down, don’t know why I do that! I’m also going to ask to be monitored more regularly and see what response I get. I have other questions for my endo, including how many patients with Graves she has had…still going to ask for a second opinion though, just need to find some courage to do that. Sounds silly I know, my confidence is pretty low at the moment, it fluctuates hugely like most my emotions and feelings recently. Hehe…would prob be a good thing if the Graves rage hit me while I was in there…I wouldn’t care what anyone thought then
!!!Hope you and everyone else are having a good, or at least better, day today.
Catherine
” title=”Smile” />
xHi Catherine
I hope you got on OK at your appointment and you are very welcome for the support and identification, that’s what this forum is for. And yes it’s helped me too to know you are not far away either.
I hope the doctor was supportive and your blood tests were promising, and more importantly your doctor is looking at your blood results AND listening to your symptoms. It would not be unreasonable that they are also looking at the actual state of your thyroid gland and what shape that is in. They are a bit better at this in the States, what with uptake scans and the like.
To say again, you are NOT making excuses. I also understand playing down the symptoms. I am a fairly strong person but I’m also wary of doctors at this point, I’m worried they are going to label me as ‘neurotic’ (my first endo used that word in a letter to my GP, he said I was ‘neurotic and over anxious’ – given I was in the middle of a very dangerous bout of thyrotoxicity I’m not quite sure how he expected me to be!!!) and I think I’m overly worried that I appear to be ‘rational’ so that they listen.
There is this more general perception that emotions are somehow ‘irrational’ – personally I believe expecting scared and poorly HUMAN beings to be rational all the time is in and of itself irrational, but that’s just me!! It is also rather extraordinary how endocrinologists and GPs – with no relevant clinical experience or training – fancy themselves as therapists, declaring all and sundry as mentally ill. If it wasn’t so insane it’d actually be funny
Anyway, I’m getting on my soap box again so I won’t rant!!! I’m glad they are doing a full thyroid screen and I’m assuming, given you’ve had a GD diagnosis, that they’ve tested your antibodies as well? And they’ve checked your eyes are OK and there’re no TED issues?
Anyway, let us know how you get on. It might be that your endo isn’t open to the second opinion idea but you are entitled to one, and you are entitled to be referred to a consultant of your choosing, so your GP should be able to help you with this if your endo won’t.
I’m doing OK, I’m writing this from my make shift office in my mum’s spare room, come home for a couple of weeks as I’m too poorly to take care of myself. At least here I can try and work and also get some of my meals cooked and some support with living. I’m rather annoyed it’s come to this as I’ve been on ATDs for nearly two years, but there we are. Worst of all is feeling ill and being FAT when it’s got nothing to do with my calorie intake, it gets me down but hey, I’ve not dropped off my perch just yet!!! I’m deciding whether to move back to my flat in London pre op. We’ll see.
Look forward to hearing how it all went.
Rebecca
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