[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169932

Hi Bobbi and Kimberly

Thanks for both of your posts. Thanks, yes I’d spotted Odapoda’s post too and I’ve posted on her thread, it does sound very similar and very hopeful.

According to my endo, my thyroid has already dumped all its stored hormone but the surgeon reckons the inflammation is the real culprit, as well as the fact I’m currently overtreated, and my levels are TOO LOW. My labs have come back that I’m in the very bottom of normal ranges, a cat’s whisker away from hypo results (and my TSH is nearly 2). I’m not particularly surprised to report that my ferritin has come back very low (of a ref range of 15 – 250 my result is 15). I’m still awaiting my Vit D results but I’d wager it’s also in my boots.

As I’m sure you know, there is a very well documented link between low iron and hypOthyroidism and I believe it creates a bit of a vicious circle of symptoms including severe fatigue, muscle weakness, heart palpitations, hair loss, brain fog, and I also believe it inhibits the action of the thyroid peroxidase enzyme, required for efficient T4 to T3 conversion. Low iron also interferes with metabolism, in a way that I’m too foggy to get my head around.

I believe this is yet more evidence that I’m currently over treated and not enough care is being taken with my case – my surgeon has already suggested that I stay on a very low dose CBZ (2.5mg every other day) as this is clearly keeping my thyroid very suppressed now and we don’t want to risk a relapse pre surgery, but he’s also recommending that we add in 50 – 75 mcg of thyroxine so that we nudge my TSH down to between 0.3 and 1. This should help me function a bit better.

I’m currently awaiting my Endo’s response – I’m hoping my faith in my endo’s inherent decentness has not been misplaced and he will be able to agree to a change in the course of my treatment (ie able to admit he might have got it wrong!).

I apologise for moaning, but I am so SERIOUSLY FED UP with this disease, and even more fed up with my treatment. I have told my endo that I am in the last chance saloon with my job and finances, and can he please give me a very clear steer about whether to give up work, as I’m about to hit financial ruin and my only other option is to move home to my parents, 200 miles from any of my doctors, friends or support network. I really am very angry that it’s been allowed to go on this long.

Fingers crossed for a quick referral to the surgeon and we can get this whole thing over with and I can start getting better.

Thanks for reading and letting me vent.

Any advice on the ferritin levels gratefully received.

Thanks

Rebecca
x

[RebeccaJT]

in reply to: New to Graves and to NGDF #1169907

Hi J

I think your question was about getting your thyroid under control enough to be able to have surgery? Whilst I don’t know the exact answer to that, I do think they can do it quite quickly. It depends on your levels at the start of treatment and the dose of ATDs they give you, and I believe they also give you an iodine solution immediately pre-op to shut the thyroid down.

I was very poorly last winter, and was going very hyper indeed and I was on 60mg carbimazole (which is equivalent to 600mg PTU) – my endo said usually to shut the thyroid down entirely, they usually give about 40mg. My levels came hurtling down from very toxic to almost hypo in a month. Obviously living through such a rapid climb down in levels is fairly horrible and difficult, as the body has to adjust to a massive shift in hormone levels. However, given the cancer angle I would say keep asking questions until you are clear on the answers. Also the NGDF main website has some excellent factsheets on treatment, you might find more info there. They also have some support groups, and you could also call the office?

It sounds like your experience is very different to mine, but knowing what I know now, I really wish I had been more politely assertive at the beginning of my treatment. Ideally your relationship with your doctor should be a partnership, and your doctor should be listening to you very carefully!

There are lots of people on here who have had total thyroidectomy (I’m due to have the op in the next twelve weeks so I’m learning all this too) so my suggestion would be to search the board index using ‘surgery’ and ‘thyroidectomy’, ‘cancer’ etc and look at past threads. I’ve also sent private messages on here to one or two people I identify with and they have been helpful one to one.

It is extremely good that you have a very experienced surgeon – that is very important. My first consultation with my surgeon was absolutely brilliant, and he answered all of my questions in depth. I’m due to see him again for another pre op assessment and I’m already amassing another list of questions. It might be worth you finding out what the procedure will be and when you will be referred for your first consultation with the surgeon? Just keep asking questions, it’s your body!!

Good luck with everything,

Take care

Rebecca

[RebeccaJT]

in reply to: Back. Missing one thyroid #1169905

Hi Oda

Thanks for your post and great news you are feeling good. My story is so similar!! I am scheduled for urgent surgery after nearly two years on ATDs (and feeling awful) and a short spell in so called remission (feeling worse). I now have a good surgeon who says that it’s the INFLAMMATION in the gland not just the hormone levels that make us feel terrible, as evidenced by us feeling wretched when hypo and ‘normal’ which is sounds like you also experienced. I have a thread going re surgery called ‘what to ask surgeon re thyroidectomy’ if you get time to have a look.

I’m very worried about it all – and they are currently checking all my vitamins as it looks like those are all over the place too – not least how I’m going to get through to the operation when I’m falling to bits right now! It turns out I’ve been misdiagnosed and seriously hyper for at least ten years, and ill with Graves since I was a teenager, so I’m really glad you got treated early.

Anyway, I just looked up all your other posts, and I identify a lot with your story (except I’ve got fat and you were thin!!) and it gives me a lot of hope to see that you are finally feeling better. I suspect that something funny is also going on in my throat – I can feel it pulsing, it feels like my heart is in my neck! It wouldn’t surprise me in the least if my goiter isn’t growing into my neck cavity too, I’ve heard that story a lot.

Anyway, I’m glad it’s not just me who is fighting to get heard about the devastating symptoms of this illness. My surgeon said that most doctors leave med school knowing virtually NOTHING of value about the thyroid. I agree with him, my medical notes are a litany of (often well intentioned) incompetence! As you can tell, I’m still a bit angry about that!

Anyway, good to hear your story.

Best wishes

RebeccaJT

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169929

Hi Kimberley

Thanks, yes I think my surgeon knows his stuff, he did say he’d done 1,000 and a friend of mine was operated on by him in January and has nothing but glowing praise for him and for the procedure (hence me going to see him in the first place) but I will most definitely keep you posted. I confess I’m feeling so ill I feel terrified, three months feels like a very long time to wait when I can’t sleep, I’m anxious and I’m struggling to do any work!

In the meantime, I would be grateful for any feedback on my symptoms – particularly the pain in my neck. Do you think I need to be banging on any doors or is it normal? I was seen at the GP (by the nurse) last night but it was nearly 7pm by the time I was seen (last slot of the day) then the GP came into to update me on my referral (and also to check why I was there again for tests – it’s been another two weeks – I think I’m a ‘high maintenance patient!!) and I forgot to ask.

They are also checking B12, Ferritin, Folate, Gamma GT, Vit D and my red cells – I had a very odd cell count last time, and they said my results had flagged as someone abusing alcohol (which is very odd as I’ve been completely teetotal for 9 years, I don’t even use alcohol in mouthwash!) but I also know that hyper issues can take their toll on the body, as can all the adrenalin and stress. He did mention that pernicious anaemia was a possibility, but I think my cycle has been so, so heavy since I went hypo that it’s probably that. I’m eating well and all the rest …

Any ideas? I’m particularly bothered by my neck and my booming heart – what do folks think?

But thanks again for responding, I really appreciate all the help here. Hope you had a good conference in Boston.

Best

Rebecca
x

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169927

Shirley

Thank you so much!!! Sorry I’ve gone a bit quiet, it’s all been a bit much to take in.

I’m in a bit of a pickle – full of hope one minute, scared the next, angry the next, crying the next. I think there is the adjustment to a new reality and also trying to cope with feeling so ill and tired and all the rest, that maybe it’s no surprise. Also financially it’s incredibly tough, my mum has just helped me out again as I’m self employed and not on top of things as I feel so ill. I’m cross I’ve hung on so long on ATDs being told that a remission that was never going to come was just around the corner. Oh well, we are where we are!

Next set of blood tests tomorrow although not sure where I’ll be sending the results, my endo has gone very quiet and not come back to me regarding who will be managing my care pre op. The surgeon said I probably need a little thyroxine now to perk me up a bit as my thryoid is very suppressed, but not sure who will be doing that. Am going to chase.

I suspect I’m hypo, I have that booming heart rate (so loud I have constant static in my ears, like hearing a very loud bass speaker through a wall or something, so it’s muffled, a most odd sensation) and my body sort of shakes (not hyper trembling) in sync with my heart, big reverberating trembles (so taking a bath is like that bit in Jurassic Park when the T Rex is coming and you can see the footfalls vibrating in the glass of water!).

Also my neck is swollen – again not protruding excessively, it’s just my neck is just one big chunky trunk, rather than tapering inwards, it’s just straight up and down from behind my ears. I also have pain in my thyroid particuarly on the left side. He did say, when I saw him, ‘you can feel the inflammation can’t you?’ and I said yes, but it feels a bit worse.

Are these symptoms par for the course or should I be making a fuss do you think? I’m also not sleeping great, waking up too early, and I feel anxious. A mix of hyper and hypo symptoms, it’s all so confusing.

Anyway, I’m off to see a Benedictine Monk this evening for some help and guidance (I’m a bit of a spiritual magpie, but there’s a very famous monastery not far from me, we have a buddhist monastery not far in the other direction, I go there as well!!) and I figure that if I take care of body and soul, everything else will take care of itself!

And yes, if you are ever here again then coffee is on me! One of my dreams is to come and do a proper tour of the States, so when I’m well maybe I can look you up!

Thanks again, I don’t know where I’d be without this forum.

Best

Rebecca
xxx

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169925

Thanks to everyone for your help, kindness and encouragement.

In haste, as it is very late here in the UK but I wanted to let you know how I got on. I was seen by the consultant endocrine surgeon at a large London university hospital on Thursday. He was a very, very clever and frankly marvellous man!

He examined me and questioned me closely and concluded that by my account of symptoms and by the state of my swollen neck, frazzled thryoid and nodules that I’d been in active hyperthyroidism for at least ten years!!!!! From further questioning he concluded that my disease process started at the age of 17 some 22 years ago – there’s more to this that I will write another time but he said the upsurge of puberty hormones can turn the disease ‘on’. I said, ‘So I am not mad then, there has always been something wrong with me?’ and he said, ‘My dear, you most certainly are not mad, you have graves disease’. I then promptly burst into noisy sobs, and he passed the tissues!

In his opinion my thyroid is destroyed beyond repair and my life has been devastated for long enough. He said the physiological and psychological impact of my illness has been prolonged and complex. In other words patients like me, by the time they get to him, don’t know whether they are standing up or sitting down, they are so over analysed and introspective and labelled with all kinds of problems and neuroses they don’t have. In his opinion I have NO underlying pathology or mental illness of any kind, I’ve just been slowly poisoned over the years by my own hormones and disbelieved by a bunch of (in my opinion, sexist and lazy!!) doctors, which has compounded my confusion and self doubt.

He says a large proportion of endocrinologist fail to understand that it is the INFLAMMATION in the gland that causes 70% of the symptoms, as evidenced by me feeling wretched whilst hypo and normal on CBZ. He also concluded that my thyroid is currently TOO suppressed, even on a tiny dose, as evidenced by my SYMPTOMS and what I am telling him, and I probably need 50mcg thyroxine (mini block and replace) to help me limp through to surgery.

He is a very popular doctor, has done more than 1,000 ops (and seen more than 3,000 RAI patients) and he said there is not yet one that he has not restored to happiness. I am totally reassurred on replacement (again, more to say about knock on absorbtion and gut autoimmune issues that interfere with the right action of the replacement in some cases, but nothing he’s not managed to fix) and given my precarious financial and work situation, my level of acute illness and my, frankly, utter misery at a situation that has been going on far longer than it should have been he is going to squeeze me in in the next 12 weeks if not sooner (most patients have to wait a year). Given the poor handling of my case to date, and my fears, and my severity, he will follow me up himself and he will sign me off personally when, and only when, ‘happiness is the outcome’.

Suffice to say I could have kissed him! He was very, very convincing, listened very closely to me indeed and I was with him for more than an hour. Obviously I am now swinging from jubilation (I knew I was right, I knew I wasn’t mad!!!!), to fear at the process – the whole op and recovery not being easy, to anger at the mess my life has become and the potential I have not fulfilled because of this disease and the way I have been dismissed as a hysterical nutcase.

I took great joy in telling (my shocked and somewhat humbled) GP that he might like to delete my medical notes from the age of 17 onwards and replace the pages and pages of complaints about acne, anxiety, panic attacks, depression, alcohol issues, insomnia, neurotic shaking, irregular periods, etc etc etc and replace it with the legend, ‘undiagnosed Graves Disease’.

Anyway, the referral letter has gone, I will be seen for a pre-op assessment at his hospital clinic (I saw him at his private practice for a one off) within two weeks, and I’ve also written to my endo to say I’ve taken a second opinion. I’ve yet to get an answer on who will be managing me pre handover.

But I just wanted you to know that I made it in the end!

Best wishes to you, I will keep posting my surgery journey here as I hope it will help someone else.

(A very definitely sane)

Rebecca
x

[RebeccaJT]

in reply to: Smoking and Graves Disease #1169360

Is this state the obvious day?

All smokers know they shouldn’t smoke. It’s called addiction.

Whilst I appreciate your heart is in the right place, I suggest you stop telling people what to do and allow other smokers and ex smokers to share their EXPERIENCE, rather than dispense advice.

Thanks

Rebecca
Recovered smoking addict, not an idiot.

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169923

Shirley

Thank you so much for your post. I also PM’d lhc11 today – you will recall the really long thread that she posted over the entire course of her treatment from 2008 up to earlier this year, and her struggles to decide what to do. I’ve read and re-read that thread several times as I identify so strongly. I am deeply encouraged by both her and your experience. You will be pleased to hear that I’m seeing the surgeon tomorrow at 4pm GMT!!!

It’s late here now, so I will sign off. I hope all is going well with your TED (that’s a conversation I want to have with you another day too!) but for now thanks for the injection of HOPE. I’m so trying to do the right thing, but I’ve realised short of going to med school for the next ten years, the best I can ever hope to be is an expert patient like other people on here, and in the end I just have to go on trust and faith, after having done the footwork (and homework).

I want my life back!

Anyway, Goodnight and God Bless for now! And in a day of very odd but encouraging coincidences, I am from Bridgnorth originally, just across the border into Shropshire from Birmingham, so Bromsgrove is no distance at all from where I grew up. Do you know the mac arts centre in Edgbaston? I do some work for them, and I am in that part of the world a lot! Small world!

I will post more tomorrow.

Best wishes and thanks again,

Rebecca
x
PS Yes my friend is also a God send, when I can think rationally (not easy currently) the answers do seem to be being put on my path.

[RebeccaJT]

in reply to: Anyone from North East England?? #1169919

Hi Caitlin

I’m orginally from Shropshire, now living in W Sussex, being treated in London. But I’m in ENGLAND!!! There are a few of us on here, I’m sure the others will check in as well.

If you’d like to get in touch, send me a private message – should be a little PM on the right hand side of my post. This will send me a email to my inbox here on the forum.

You are absolutely not alone but I really do understand where you are coming from. Our American cousins are generally more fortunate that us here with the NHS (God bless it!!) but there are good doctors and good treatment to be had, but as you are probably realising, you need to educate yourself about your illness – I think the British system encourages too much passivity. I am most definitely the captain of my GD ship these days, however hard I find that!!

But I would be lost without a personal contact I made on a forum here, and we now speak on the phone and email, having attended (a rather dodgy) thyroid patient support day in London together (it was like internet dating!!). The British Thyroid Foundation do have a helpline of trained volunteers as well, I spoke to a lady through them a couple of times and she was lovely. They definitely had contacts in the North and there are some support groups. Obviously use your good judgement about what’s helpful.

Anyway, only contact me if that sounds helpful. You’d be forgiven for thinking, after reading back through my posts, that I’m completely deranged ” title=”Very Happy” /> . I promise you I’m not, this is just a good place to vent frustration (if you want to start cultivating a virtue to help with your GD journey, I’d suggest patience, not my strong suit!!!).

Anyway, glad you found us here. Good luck with everything.

Best wishes

Rebecca
x

[RebeccaJT]

in reply to: The actual disease #1169161

Hi Hopeful

You are very welcome!! I am toying with the idea of trying to write my experiences down. I’m starting to think that perhaps it might help me to help others, who knows! More on the ‘finding my voice’ theme …

Anyway, just to say I looked up your other post, and I hear how distressing things sound right now. I really hope you are getting some answers and some relief.

Best wishes

Rebecca
x

[RebeccaJT]

in reply to: The actual disease #1169159

Hi Cate

I’m in the UK and I really identify. I now see my endo privately (he’s very good) and my GP does my blood work and we email the results in. Since switching docs I’ve had fortnightly testing and a very tight titration of my dose. First off my endo told me that there can be a time lag of up to two weeks on blood to symptoms. So you could have had a hyper blood result two weeks ago, a normal blood result today, and still be feeling hyper. It is very confusing!

I strongly recommend shopping around for a good GD doctor – this would probably be in a big university teaching hospital. My doc sees 70 GD patients a week, it’s his life’s work!! He knows his research and he really cares.

The thing to get your head around is ‘normal’ thyroid blood reference ranges. They are worked out by testing 100 female med students, ranking their results high to low, knocking two off the top and bottom (as out of range) and plotting the other 96 as ‘normal’. My endo said this not nearly a big enough population sample, nor is it scientific enough. It’s not statistically weighted to the whole population – male, female, old, young etc. Worse, (bad) doctors will tell you that if you land in ‘normal’ ranges, that there is nothing wrong with you. The test was never meant to be used this way.

A bell curve plots what is typical within a demographic. Like IQ, or height, or exam results, or growth quartiles for infants. Unless you are NZ’s tallest woman, chances are you in ‘normal’ height ranges. I’d also wager you are not the same height as me! Now it’s (pretty much) the same with thyroid – you will have a quartile, even a sweet spot, where you are ‘normal’ for Cate. You need a doc to listen and take an interest in your symptoms as well as your blood. Initially safe ranges are more important, but your doctor should care about how you feel.

My doc really helped me too when told me that elements you consider to be parts of your personality are probably your GD – usually a tendency to rashness and rushing at decisions. The agitation associated with Graves is often wrongly labelled as mental issues, which can knock our confidence. He said the goal of treatment was to slow me down sufficiently so that I and not my illness got to make the decisions. I’m nearly 18 months in and we are finally getting me stable in remission on ATDs. I’d say, unless your life is at risk, or there are complications, then TAKE YOUR TIME.

Also, I found betablockers (propranolol) really helped with the shakes, tremors and going too fast on the inside feeling. They slow down the conversion of T4 to T3.

I’d recommend complimentary treatments too (meditation, yoga, gentle swimming, walking, acupuncture, reflexology etc) to try and calm your nervous system. GD thrives on stress. If you can simplify your life, all the better. I’m freelance which has been scary but I’ve managed to halve my workload. I’ve learned to say ‘NO’ in lots of areas of my life!

I’ve also found the Alexander Technique to be absolutely amazing and I think it’s been instrumental in helping create the conditions for healing (I speak only for myself). Also I’ve found the supplements selenium, COQ10, L-Carnitine, Lemonbalm, magnesium, zinc, Omega 3,6,9, have really helped too. If I track back through my results my levels started falling once I started taking L-Carnitine and Selenium (no doubt combined with good self care, good nutrition, and drugs!) and doing Alexander. See Elaine Moore’s website for some balanced information, beware the web, cranks abound!

Finally, in response to your question, my take is autoimmune element aside, GD is a symptom of a "dis-ease". My own very unscientific research seems to suggest we GD people are of a type. We do seem to be over achievers, people pleasers, million miles an hour, anxious, driven people! We seem to have a hard time relaxing (without chemicals, lol). We put others before ourselves. We neglect our needs. We can’t say no… I could go on!

I decided I needed to change, not just fix the symptoms. I can see now that GD had been coming for a long time. I can’t speak for anyone else, but it is of no surprise to me that I’ve manifested an illness where I am quite literally attacking myself. This, symbolically, is what I’ve been doing all of my life – smoking, drinking, partying, worrying, working too hard, binging, starving, not caring for myself, allowing other people to trample all over me. I have been ‘dis-eased’.

I am a changed woman!!! On the upside, GD symptoms have given me permission to start getting angry about things that matter – I just can’t keep it in. I am finding my voice!! I have also put more time and attention into my spiritual life – I could have died, so what’s it all about????

I suppose what I’m trying to say is on good days I’m starting to see that GD might have turned up as a bit of a warning. And when I can stop fighting with what is, and start trusting my body, I can see this whole process as an opportunity to change course.

In short, I am trying to love myself better – and it seems to be working.

Take good care,

Rebecca

[RebeccaJT]

in reply to: Smoking and Graves Disease #1169355

Hiya

Just to say I have GD and TED and quit smoking ten months ago after some (well meant) threats and facts from my doctor!! I totally agree with Bobbi about facing up to the addiction side and that one cigarette will trigger the relapse process. That said, it took me a few run ups at it to completely surrender and give it up – so I cut down to two or three a day, but it was agony, and I knew I had to muster the willingness to let it go completely. I know this solution is not for everyone but also I found the power of prayer (just like alcoholics do in AA) incredibly helpful ‘Dear God, I’m craving a cigarette, please remove my compulsion to smoke’ – it worked! I am now in remission for my GD on ATDs and I’m still being treated for my TED but the damage and symptoms are now mild.

Both my endo and my eye doctor (TED specialist) told me that thyroid illness is far more likely in smokers, and I was told that my history of heavy smoking, hard partying (a misspent youth!) and crash dieting (along with underlying genetic factors, there are several autoimmune diseases in my family) had all probably contributed to my GD, along with my complete addiction to stress and adrenalin and being way too busy and not looking after myself. I was a million miles an hour, over achieving, codependent wreck by the time of my diagnosis and learning to calm the heck down, has been the focus of my recovery. Quitting smoking was part of this commitment to start treating myself with a bit more kindness!!

The crunch with cigarettes came when my TED doctor told me that my chances of severe complications, including blindness, were 8x higher if I continued to smoke. Threats of steroids were also made which scared me sufficiently – not saying steroids don’t have their place, but who in their right mind would take them if the whole nightmare could be avoided by stopping pumping their own body full of noxious chemicals. The good news is the cigarette factor in TED is dose related, so the LESS you can smoke, the better it is for your eyes.

Anyway, that’s my take on the situation. But please encourage your friend, all smokers know they shouldn’t do it(we are addicts not idiots) and most addicts get very touchy when told what to do

With best wishes

Rebecca

[RebeccaJT]

in reply to: hello im new here #1062142

Hi Therese31 and others

Yes I relate. I do understand – I was just with my endo this morning and he said most people (and indeed most doctors too!) do not understand how destabilising Graves disease can be for patients and it is important that their concerns are carefully listened to and answered. I hear your concerns re RAI and I share them although like Bobbi has said it is important to weigh up the pros and cons of your own situation, and to always bear in mind how serious GD is if left untreated.

And Bobbi, whilst I hear you and appreciate your concise commentary, I was NOT comparing RAI to a random exposure from a broken nuclear reactor, but RAI is radioactive iodine – there are implications – for the long term, for pregnancy, for exposure to pets and children etc etc. It is not without risk or consequences. I get that on balance it is often a risk worth taking.

I was recently at a (terrible) patient "support" day by a UK charity claiming to support thyroid patients where an endocrinologist from a major NHS hospital stood on the platform cracking jokes about how ‘awful’ GD patients are – how rude, tetchy and annoying his staff find us. He said his staff hate it when GD patients come in for RAI treatment, and what the heck is all the fuss about, he said, as it’s "only a little pill". At NO POINT during this comedy routine did this arrogant man explain that it was radiation really, or what it did.

Indeed, by coincidence I met a woman last week whilst out walking my dog, and she noticed my prism lenses and we got talking. Turns out she’d had an overactive thyroid (she didn’t know of what kind, as no one had told her) and she’d had RAI within weeks of being diagnosed – and to my amazement she did not even know what she’d had, had no idea what T3, T4 or TSH were, could not remember the name of the treatment she’d had (‘something to do with iodine’), did not really know what they’d put her on (‘I take some tablets now as I went too far the other way’) and she basically learned more about her own health, stood in the park with me and our dogs than she ever did at her doctor’s office!!

That is the level of treatment some British patients can get!!!!!!!! You either get lucky with an endo or you don’t, and even with the good doctors, patient communication isn’t their strong point. Which is why I see my doctor privately and I’m lucky I can afford to do so.

What I think I clearly said in my post is that unless there is an imminent health risk where urgent action is needed there is NO RUSH and patients are perfectly within their rights to put their hands on the steering wheel of their own care and figure out – with their doctor – what is best for them. Most of us get put on drugs for a time before surgery or RAI anyway, to get us ready for these more permanent options, so (major complicating factors aside) what’s the hurry?

Kind regards

Rebecca

[RebeccaJT]

in reply to: How long is too long on Methimazole? #1061119

I am in the UK and my doctor is the head endo at a large London teaching hospital, very well respected and he sees 70 GD patients a week. He is encouraging me to go for long term ADT use (here in the UK we call it Carbimazole, and it’s more common than PTU). He said that there is no reason why you can’t stay on a low dose for ten or twenty years if remission is not achieved. They do this all the time with other diseases, so I can’t see why they can’t with GD too.

Also I know that the American writer and expert patient, Elaine Moore, talks about this and how there is a tendency to rush patients through treatment for GD when really there is no real rush provided the patient is well.

Again, I can’t comment on medical guidelines but I know for me I’m sticking with drug therapy for now as I think the consequences of hypOthyroidism long term are not fully explained to patients and are also not without risk. I had one doctor say of thyroxine ‘you just take a pill and feel like a new woman’ which is clearly over simplifying a very complex illness and recovery. Many people do just take a pill and feel OK, but lots don’t and I think it’s important to think through our choices carefully. I just posted elsewhere that my doctor said that by the very nature of their illness, GD patients have a tendency to rashness and urgency that doctors can take advantage of (his words not mine) and his job was to slow me down so it was me and not my symptoms choosing my treatment!http://www.ngdf.org/phpBB3/ngdf/posting.php?mode=reply&f=3&sid=6683cd6a8ec00fbb6b2c13243ee8f33f&t=41702#

That is just my opinion and of course I really hope that you find the information you need to make a decision that is right for you.

Best wishes and good luck

Rebecca

[RebeccaJT]

in reply to: hello im new here #1062138

Hello fellow Brits!!!

I’ve been on here for a while and have found it a wonderful resource! Also whilst I love the good old NHS and I am (now) very lucky with my doctors I could write a book of grumbles about how badly thyroid and Graves disease information is presented to patients in the UK. Also doctors seem a bit trigger happy to rush along with irreversible treatments. My advice is unless you are in imminent danger, slow down, educate yourself about your illness and then take your time choosing the right path for you. It’s your body!! The GDF website (not the forum) have some great downloadable factsheets. Also a lady called Elaine Moore has an informative book and website that I’ve also found invaluable.

I also have eye involvement and my endo (and Moorfields, my eye hospital) have warned against RAI for now as they prefer it if you keep your thyroid levels steady – going too hyper and hypo can affect the eyes (Graves and TED are technically not related, but they kinda are related, don’t ask me the science, my own experience proves that eye symptoms track my thyroid, and my doctor did also tell me this). Also RAI, whilst a great solution for lots of people is in fact radiation – its the stuff that belched out of that Japenese power station!! – and I think patients should not be rushed into treatments without first being sure they know both the up sides and the down.

Ditto surgery – thyroidectomy cannot be undone once it is done. Again I’m not saying don’t do it, I’m just saying take the time if you can to weigh the options. My doctor said that GD patients, in the throws of their illness, tend to be a little anxious, intense, and prone to rashness – he said his job was to slow me down sufficiently so that it was ME and not my GD choosing my treatment. At the time, I felt so ill I could have killed him, now I could kiss that man for seeing past my symptoms to the real me that got a bit lost inside the whirlwind that is hyperthyroidism!! I just wanted it to go away and it’s taken me a long time to accept it’s not going away quickly, there are NO quick fixes and I might as well take my time.

For myself, I have chosen to stick with Carbimazole and propranolol and I was at one point on 6omg and I’m now down to 15mg after over a year. I’ve gained a lot of weight and have struggled with really horrible symptoms but for me, my choice is to try and save my thyroid.

I’ve always been a bit of a sensitive sort both physically and emotionally and I’ve been warned that not everyone suits thyroxine should I decide on thyroidectomy (and believe me I’ve been tempted, it’s been hellish at times!!!) – that I’d probably do OK but I’d never really go back to full health. Again others have no such issues but since unlike the USA, doctors won’t prescribe NDT or Armour in the UK, then there’d be no (official) alternatives if the mainstream replacement drug didn’t suit me.

I’ve decided to aim for remission on drugs (or failing that a very low dose over the long term) and I’m also trying all kinds of alternative treatments including meditation, yoga, acupuncture, alexander technique, massage, reflexology, herbs, vitamins etc etc etc to try and help my body heal. I’ve even joined a choir!! Some think that thyroid illness is about a blockage of our "voice" – speaking up and speaking out. There is a lot written about Graves Disease and stress and I know that’s true of me. It’s no wonder I’ve burned myself out!! Also, my own straw polls seem to show that we are of a ‘type’ – doing a million things at once, worriers, multi-taskers, people pleasers, people who find it hard to say no etc. Therefore I’m also changing my lifestyle.

I really hope that was of use to someone. I’d love to chat more if you’d like. YOu can always message me on here and we can chat off board about the idiosyncrasies of the British Medical System (I’m due at my hospital in London again in the morning, assuming it doesn’t get burnt to the ground by looters overnight!).

Best wishes

Rebecca

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