[RebeccaJT]

#1058781

Hiya

Just quickly, you might remember that I’ve posted a few times here about possible remission on ATDs which I’ve been sticking with (despite hideous up and down, emotional rollercoaster, massive weight gain, and persistent physical symptoms) for the last 18 months. I have now turned up three lots of normal bloods (barely, just up from hypo where I’ve been for a few months, and now right in the very bottom of normal range) on 2.5mg of CBZ every other day. This is a miraculously low dose after the hell of 60mg per day back in the winter. I’ve been diagnosed for nearly two years, but sick for at least three, but I think more like six, trying to get someone to take my mental, gynae, physical, weight, mood, anxiety issues seriously. I have been dismissed as ‘hysterical’ for a really long time, and all along I think I had undiagnosed Graves. The euphoria of getting onto maintenance dose, and turning up ‘normal’ bloods has given way to real fear as I just seem to be feeling worse and worse.

Anyway, in a nutshell, it has been HORRIFIC for a really long time. I was told, after an SOS appointment with my endo in early Aug, that I was now significantly hypo, my thyroid was well under control, we’d do a rapid and aggressive step down of my meds (which we did, 5mg every two weeks, and I’ve been tested every two weeks as well). I can’t fault the level of care I’ve been given. What I don’t understand is why I still feel so utterly awful. Crying uncontrollably, raging, shaking, anxious, insomnia, sweating, a thumping, almost booming heart rate (so when I’m in the bath, you can see it through my chest, and the reverberating through my body makes the surface of the water vibrate!!!!), feeling incredibly ill after any kind of exercise, weight gain (now at 50lbs) and on and on and on. A real bewildering mix of hyper and hypo symptoms. I have been hanging on and hanging on – barely functioning, very tired, very foggy. I am self employed and the implications for my finances and my work are really starting to get very serious.

I don’t seem to be able to get a straight answer about symptoms. If I am normal, why don’t I feel normal???? I’m being told to tough it out a bit longer but I’m not sure that I can. I have had just the worst two weeks ever – I feel as poorly, unstable, upset and frankly deranged as I did pre diagnosis. And I know myself pretty well, it’s definitely thyroid symptoms, I’m very tuned into my body (which has made treatment doubly hard, I seem to be acutely sensitive).

A friend who had a total thyroidectomy in January (after two years on PTU, and normal blood but not feeling normal) has been keeping a diplomatic silence for a while now, respecting my choices and letting me find my own way. However, she stepped in quite strongly this week (thank God someone who understands!) and suggested I go and see her surgeon just for a conversation and a second opinion. He is a consultant endocrine surgeon at one of London’s leading university teaching hospitals. Has done more than 1,000 ops on Graves patients. His initial email to me said that it is the INFLAMMATION rather than just the hormones that are causing my symptoms as evidence by their continuation even when hypo and normal. As RAI is counterindicated because of my TED, he says surgery is the only way I can really expect a return to normal functioning.

I am now at the point where I am willing to consider surgery. I simply CANNOT go on like this. Remission, from what I’m reading, is usually shortl ived so I’m beginning to think I’m delaying the inevitable. I had so hoped to save my thyroid but I think I am at the point where I simply cannot stand the pain of trying to get into remission.

I am very afraid of surgery – particularly since my current (lovely I might add) endo has warned me that he has a very good instinct for people who don’t suit synthroid and he thinks I’ll be one of them. He says he thinks surgery will ‘condemn you to a half life’. You can get Armour here but only by the back door – he says he couldn’t help me (doctors get struck off here for prescribing it) – which would leave me navigating the world of quacks and cranks, not mainstream medicine. I’m really confused.

I’m keeping an open mind, and going to hear this surgeon out, and my friend keeps mirroring back to me all my fears – saying, ‘I thought that too, just go and talk to him’. She says he saved her life and gave her her life back. I’m also starting to think that even if I don’t go right back to the quality of life I had before, it can’t be any worse than the shadow of my former self that I seem to have become. I miss myself, does anyone else understand that? I want ‘her’ to come back!

Anyway, I’m hoping someone will identify. Also what questions should I be asking this surgeon? I have searched the boards a little for previous threads already.

Thanks,

Rebecca
x

[snelsen]

#1169922

Hi REbecca, OF COURSE you can’t go on like this!!!!! I am so so sorry that you re having these experiences and feeling like crap. I have so much to say, but at same time, have concerns about sharing my thoughts about how you are being treated for this disease, for I am not a doctor.
I will start with your friend! What a great friend! I suggest you learn a lot from her experiences and doctors. Of course everyone may go a slightly different path with Graves’, but I so happy that she spoke up. Included in her advice to see her surgeon, which I highly recommend, I encourage you to look up prior comments on having a thyroidectomy. I chose it, and I loved having it. It seemed the very quickest way to MOVE ON and get this "effing" disease under control. I much preferred it over ATDs, which I felt strongly against because of the uncertainty, and RAI for the long time it takes to get to that "sweet spot" and get my life back. That is the way I felt. Seems to me that you should have been done with ATD’s a long time ago.
Clearly, the labs matter, but YOU and how you feel, also matter. A lot! And a good endo listens carefully to how you are feeling, along with the labs.
If there is anything I can do in the future to reassure about the surgery, along with your friend, I would love to be here for you.
I imagine it will take a while, but I encourage you to call tomorrow for an appointment with this surgeon.

From my own personal view, I am not a bit willing to gamble with remission, whatever that may be, for the uncertainty is always there like a time bomb. I think remission is a rare happening.

Incidentally, I did live on England for a couple years (Bromsgrove) but I am an American living in SEattle. I am a certified Anglofile! Been back several times.

Regarding your endo. Sorry, but I do not think he is serving you well at all. Any way you can easily get a second opinion?
You have been going through hell, and things are not working for you. I think he is full of crap for having a feeling about Synthroid. That is just plain silly. there is no way he can have a feeling about it. It has been around for years and years, and I am pretty sure it is available in England, but it is more expensive than the generic levothryoxine, which is just fine.
http://www.netdoctor.co.uk/medicines/100002574.html Tons of people take generic over here, and some take Levoxyl.

I am familiar with the NIH, and don’t know how difficult it is for you to find another endo.
I want to send this before I get timed out. I have just had surgery for TED, and seeing is more difficult this week, but wanted to answer you and give you hope and encouragement.
Shirley

[RebeccaJT]

#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.

[Kimberly]

#1169924

Hi Rebecca – I’m so sorry you are continuing to feel poorly after all you have gone through.

We actually have a thyroid surgeon speaking at our annual conference on Saturday, so I should have some good info for you on questions to ask. Will post as soon as things settle down.

Take care!

[RebeccaJT]

#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

[snelsen]

#1169926

REBECCA!!!! I AM SO SO HAPPY FOR YOU!
This is wonderful news. It is 0200 in your world now, so you will see this post in the morning.
This is such a marvelous affirmation for you. I hate it that you have lived all these years undiagnosed. Unfortunately, it is more common that it should be. ESPECIALLY because we are female!
Finally, there is progress in medical education, primary care, ob/gyn and internal medicine, for docs to THINK OF GRAVES’ AND DO A VERY SIMPLE THYROID PANEL.
So, you will have surgery as soon as he finds a slot? Great. You will be so so so happy.
I think I pretty much described my experience, but be sure to write with all your questions and worries. We will help you through this. along with the surgeon.
Good JOB, telling your primary care doc to write a note in your chart, saying that you had undiagnosed graves’, which explain all those symptoms over all these years.
And…it is a damn shame that you have experienced all of this. I am so sorry. Believe me, if I have another trip to England in me, we will be sure to meet! I travel "cattle car," and it is getting harder and harder as i get older. But I would love to return to England one more time.

I will go to bed, thinking of you and your happiness.
Shirley

[RebeccaJT]

#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

[Kimberly]

#1169928

Hi Rebecca – Sorry for the tardy reply…I’m back from Boston and working on getting caught up again. In the meantime, it sounds like you have things pretty well sorted out! For patients contemplating thyroidectomy, the biggest priority we were told to look for at the conference is a "high-volume" surgeon that has a lot of experience with this procedure. Sounds like you are in good shape there.

Our presenter also recommended asking a surgeon about his/her complication rate. The most common complications with this type of surgery are damage to the nerves around the vocal cords and parathyroid glands. *Any* surgery can come with a risk of complications, but having an experienced surgeon can minimize these risks.

Wishing you all the best — please keep us posted on this phase of your journey!

[RebeccaJT]

#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

[Kimberly]

#1169930

Hi Rebecca – You aren’t a high-maintenance patient, you are a CUSTOMER who deserves to have your concerns taken seriously!

It’s certainly possible that inflammation in the gland could be responsible for the pain as well as for the heart palpitations. Sometimes when there is inflammation, the gland can actually pour out stored hormone into the body, causing a return of hypER symptoms.

But it’s best to mention this to a doctor to make sure he/she is able to rule out any other possible causes.

Take care!

[Bobbi]

#1169931

Hi, REbecca:

If you haven’t seen the post yet, odapoda, wrote today on the topic "Back. Missing one thyroid." (Or wording close to that…..) Anyway, it sounds like she went through somewhat the same thing you are experiencing. You might want to check it out.

[RebeccaJT]

#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

[snelsen]

#1169933

Gosh, Rebecca, it seems that you are doing a very good job advocating for yourself, learning more about your disease, and you have a defined path to recovery, back to being YOU. Based on what you have said, I think the very last person in the world to advise you about anything having to do with leaving your job, your support system, your planned surgery, moving away from friends, going to your parents, is your endo. If I understand correctly, you are connected with the surgeon, is he willing to write your rx for meds at this point, sounds like it.
Far too many of us have been misdiagnosed, not diagnosed, and suffered greatly as a result. But there is hope for you. You have a plan, you can easily correct any ferretin and or iron issues you are having.
Are you willing to slug in there, continue to work? Can you get time off for your surgery? In this economy, if you want to make a work change and are fortunate enough to have a job now, you are in a much better position if you keep it. If you want to make a job change later on, it is a huge bonus if you are employed when you are looking for a different job.

You are getting so close now to regaining your life back. You can do this. If I have misunderstood anything about doctors, prescribing, etc etc, you can straighten me out in your next email. My thought is that it sounds like you certainly do not want to continue with this endo, do you have a choice? Or else, use him for what you need, while trying to explore other docs.
Shirley
In way less than a year, after your surgery, maybe even 2- 3 months after, your world will be so much better. You do not have to live like this, you have a plan and a life line to good health.

[Kimberly]

#1169934

Hi Rebecca – On the Ferritin issue, I’ve seen studies linking Graves’ hyperthyroidism to anemia ( Gianoukakis et al, Clin Endocrinol (Oxf) 2009;70:781-7) and also linking subclinical hypothyroidism (Cinemre et. al J Clin Endocrinol Metab 2009;94:151-6) to anemia. You and your doctor will need to decide whether supplementation is appropriate at this point, or whether you will see a benefit once your thyroid hormone levels are back in balance.

My own endo recommended Vitamin D supplementation when my levels came back low, but they kept a close eye on my levels to prevent my levels from getting too high. Once the levels started increasing, they backed down on the supplements.

As for work, the presenter who spoke at our conference said that most patients can return to work after thyroidectomy within a few days to two weeks. Hopefully, that will help you gauge whether to start taking on new projects now, or whether waiting until after the surgery would be better.

Take care!

[RebeccaJT]

#1169935

Hi both Kimberley and Shirely

Thanks for both your posts. It’s been a tough week! Shirley, I had hoped my endo might come through but he’s trying to wash his hands of me. I had my latest results a week ago and I normally email them to the endo, and he responds next day. He didnt reply for a week so I emailed him yesterday again to say also got vit D result (through the floor as suspected, virtually the lowest reading you can get!!) and asking him to also advise on CBZ dose as I’m still in the very very bottom of normal ranges and still feeling terrible.

But he’s now back tracking on all his ‘you feel well at the top of normal, we are aiming for a T4 of 19-22, you are clearly very hypo for you’ etc etc and is now telling me that my results are nice and normal. He has completely ignored my reporting of continued weight gain despite eating 1,000 calories a day (53lbs!!!), pounding heart and heart palpitations (nearly went to the ER it was that bad), insomnia or oversleeping 12 hours at a time, chronic muscle weakness, terrible brain fog and that I can barely scrape through with my work, that my mother had just paid my rent and I was about to lose my clients (and my home) – I used to earn a really, really good wage. He knows I’m self employed and there is NO SAFETY NET – that’s why I went private in the first place and not NHS. Not one word about this has he said – just continue taking the same dose.

I also asked him about a small dose of thyroxine replacement as recommended by teh surgeon and he’s said this is not nec unless I go out of ‘normal ranges’. Bearing in mind I saw him for an SOS appointment on 10 Aug where I had the same results as I have now and he told me then the reason I felt so awful was because I was now chronically hypo, which was causing the weight gain and lethargy, and he was going to fix it. He’s now taken all that back (and I think he is gearing up to write me off as ‘mad’).

He made some patronising remark about Vit D ‘what with winter approaching’ – all this is cc’d to my GP by the way which is doubly annoying as he’s undermining me in their eyes too – and that I might want to buy a supplement. Totally ignoring the thyroid link with both ferritin and Vit D – ie) that I’m very obviously over treated.

Cut a long story very short, whilst I am swinging in the breeze a little bit I’ve called the surgeon’s secretary and asked how I go about getting under his wing NOW and getting him to take over the entirety of my care. He’s alreay said if it was him he”d have me on very very low dose ATDs (like I am now) and a tiny bit of thyroxine to keep me functioning. In fact he said he didn’t even need to examine me, he could see that I needed more thyroxine. So even if he just wrote to my GP and told him what to do that’d be an improvement.

I’m very disappointed but hey, better to know. I’m seeing the surgeon again at the hospital on 29th but hoping we can get my meds sorted this week – I am not exaggerating, I really, really need HELP NOW – I also need my GP to start doing his job as well, he needs to get off his backside and start advocating for me, I’m not asking him to be an expert.

Sorry guys, I hope that wasn’t rant! I’m so, so, so fed up of this poxy illness and silly doctors. I swear I’m writing a book when I’m out the other side, you couldnt make this stuff up.

Yours just doing one day at a time (when not sobbing uncontrollably with frustration ).

Rebecca
x

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