[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169950

Hi folks

Just very quickly as it is gone midnight here in England. Had my follow up appointment with surgeon today. Very positive, happy with my wound, tweak of my meds. But also had a bit of a shock. Turns out I have papillary cancer – he removed a 1.85cm carcinoma and my lymph nodes when I had my thyroidectomy and I how have to have radioiodine ablation to knock out any other cancerous cells. I did manage a joke that finally I will be truly thin and will lose all the weight I’ve put on ATDs, as I have to have a permanently suppressed TSH for life. This means lots of thyroxine and no arguing with silly GPs about ‘normal’ functioning ever again!

With hindsight, it was the ultrasound that kicked off the process of urgency – I now remember the technician asked in a concerned voice who my doctor was. I was then bumped up the list but he waited until today to give me the pathological rather than just clinical diagnosis – it’s stage one and it hasn’t spread. My prognosis is excellent. He also said my thyroid was extremely inflamed indeed and I must have been suffering horribly – I really truly am not MAD, just very sick. I have a copy of his letter, he said, ‘Your GP should enjoy reading that one!’ (more laughs).

I did cry but I did laugh too – it was easier to hear knowing that the tumour is out of my body. He is also an AMAZING doctor and I trust him. He gave me a rub on the back (in a fatherly manner I hasten to add!!) as we walked down the corridor and he told me not to worry, he was going to make me better. Given the complete battle I’ve had with idiotic doctors, I’m extremely pleased to report that I believe him!

Anyway, more to say about diet, levels, etc etc but for now that’s the big news. I notice lots of people have read this thread, I truly hope it is helping, particularly those people who are turning up ‘normal’ blood results and still feel awful. DON’T GIVE UP!

Lots of love

Rebecca
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[RebeccaJT]

in reply to: looking for answers #1170101

Hello there,

Greetings from England. I am not a doctor but just to chime in with the others regarding antibody tests – especially TRab, and TPO (or Anti-microsomal) antibodies. Also a TSH test is not a reliable measure of what is going on in your body if you have hyperthyroidism, so they need to be testing both your T4 and T3.

But just to say I had exactly the same thing. T4 never quite went out of range, T3 spiking of it’s own accord – sometimes up, sometimes normal and a suppressed TSH. This sounds like it could possibly be Hashimotos disease to me which you can have along with Graves – a high TPO antibody reading would confirm this. Hashitoxicosis can make you feel INSANE and might explain why you are feeling awful even when your blood is normal.

You can read my story about Graves, Hashis and TED (I also have eye problems) in my thread ‘What to ask Surgeon re Thyroidectomy’ – particularly the early posts.

My Hashi diagnosis was missed (despite two very high TPO antibody readings six months apart right at the beginning) and I was put on ATDs which, of course, did nothing for the spikes of T3 because I had Hashis. This meant I was over treated on drugs, fat, sluggish, miserable and hypO – having these awful T3 surges, sometimes four hourly, causing awful rage, panic and crying attacks. It turns out it was also the INFLAMMATION of the thyroid gland itself (severe thyroiditis) not just the levels of hormones in the blood that were making me feel wretched.

Please do insist that your doctors take you seriously and do ask for all the copies of your results and keep track of your blood yourself. When I finally saw my thyroid surgeon he ran his finger down a set of 20 blood results (that I’d kept) and diagnosed me in less than a minute. It was the intermittent T3 spikes that did it!!

As I have eye problems (TED not just lid retraction, which has come and gone with my thyroid levels), RAI was counterindicated and I had to have surgery. But this forum is amazing, you will get some really sound advice and sharing of experiences from other patients.

Best of luck

Rebecca

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169948

Hi Sheila

Thanks. Yes intend getting print outs of all my blood results, have done that so far, and had clocked that I need to be keeping track of normal reference ranges. I’m rather cheered that my surgeon told me we are aiming for a TSH of 0.3 to 0.5 as that is what typically suits most people, so none of this nonsense that a ‘normal’ TSH anywhere in the range means I should be feeling well. Had enough of that with the last doctor!!!! As you know, the UK has the widest ‘normal’ ranges in the world, which means a lot of poorly people get told there is nothing wrong.

Anyway, overall I’m doing OK. My wound is healing very well and I was off all pain medication within four or so days. I can now bathe and wash my hair, and I’m hoping to return to gentle exercise soon – a little swimming and gentle yoga.

My question today is about absorption as picked up on another thread ‘thyroxine absorption’. As you know I’m on a special diet to try and treat any food intolerances to ensure optimum absorption of my replacement meds. This seems to be going well and I’m being really careful. However, I’m not really feeling much better in myself after a first flush of a few days of feeling better. I’ve started feeling worse again.

As I also have chronic low calcium I’m on whopping doses of calcium and vitamin D – I’ve got two different calcium supplements three times a day and alphacalidol first thing in the morning. No one at the hospital mentioned waiting four hours after taking thyroxine before taking calcium. They’ve warned me about iron so I take that at night, and told me to wait before eating but no one mentioned calcium.

I’m feeling a bit annoyed about that as the last week or so I’ve been feeling increasingly tired, and that horrible hypo booming pulse and the reverberating shakes are back. I think my dose is too low anyway but could it be the calcium supplements stopping me absorbing the meds???

I’m back at the hospital on Tuesday morning and I will see my surgeon in person. He’d already left for his Christmas break so it was not him who discharged me from hospital. There was some confusion with my discharge drug list (several shift changes of doctors and nurses and lots of to-ing and fro-ing to the pharmacy) so I’m assuming in the rush they forgot to warn me.

What do you guys think?

Thanks

Rebecca
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[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169946

Hi Kimberley

Thanks. Yes was aware re dogs and thyroid, they can get graves and eye disease too, poor things. I didn’t mean she had thyroid issues, more that she’s picked up on my jingly jangly agitation and she has also been overly anxious. I’m fairly confident that as I calm down, she’ll settle down too. I think she’s already aware that my body chemistry has changed.

Anyway, I need to go and lie down, have eaten far too much again (although of the right things!)…

TV adverts here are now all diets and beach holidays!

Rebecca
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[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169944

Hi Folks

Happy Christmas from England! Well I survived the surgery and I’m at home and recuperating. My thyroid is gone!!

I was in hospital for two nights – went in late the night before for tests and prep, and then was wheeled down to theatre at 6.30am the following morning. Turns out it was his last day of work before Christmas and I was one of three emergencies he managed to fit in. We even managed a bit of joking as he swung by the theatre holding area at about 7.30am to get me to sign the paperwork, as he had a big carry out coffee that smelt divine in my nil by mouth state.

I took my dressing off today and my wound is very neat and healing nicely although I’m still a little stiff and sore (more from the manhandling in surgery, I was warned they would probably scratch my throat with tubes, and my neck feels a little cricked where my head has obviously been tipped back). However the worst of the pain seems to be over, and I’m resting and sleeping a lot as the anaesthetic and heavy duty painkillers leave my body. My voice is weak and thin but OK, and I’m very tired and feel a bit toxic from all the medication.

However, my neck looks so, so, so much better – tapering inwards like it used to. I’ve lost a few more pounds too, I hop on the scales and there is finally gentle movement downwards (I rejoiced when the pharmacist took away my old ATDs, I am SO GLAD to never have to take that stuff anymore, I hated it, every second of it!!!!) – weight wise there’s a long way to go, but I’m not too worried. We’ve started me on 125mcg levothyroxine with a view to perhaps increasing it to 150mcg (or more likely alternating 125 with 150 daily), we’ll see how I go. However, more rejoicing when he told me that for patients on replacement a TSH of 0.3 – 0.5 is usually where most feel best in his experience.

So whilst I feel groggy, tired, sore, and I’m obviously now dealing with the aftermath of an adult lifetime of undiagnosed and untreated hyperthyroidism, and Hashitoxicosis, I also feel immediately BETTER! I just feel grounded, and like my insides are still and calm. That horrible hectic feeling, that persisted even when hypO on ATDs, seems to have GONE and for that I am truly THANKFUL.

It turns out the tingling in my hands and feet was chronically low calcium, so my last endo has proved himself even more incompetent than I thought (or so busy covering his own backside when it appeared that he’d got it wrong, as I’d been complaining about it for months). There was a hairy moment when my hands and feet went numb, my blood pressure dropped and my pulse spiked but I was very closely monitored and they did immediate tests. I’m on a very high calcium and vitamin D supplementation regime as my ‘bones are hungry’ and I’ve been told that the biggest thing I can do to help myself is to stick with the diet my surgeon has prescribed. Now I’ve survived the worst of the exclusion part of the diet, I’m very aware of my gut and can easily sense what causes it inflammation. I’m fairly sure it’s wheat and dairy and sugar. He’s told me that if I stick to my food plan there will be no issues with absorption of levothyroxine.

I have follow up on 10th January, but so far, and it’s only been a few days, I’m very hopeful. I feel better inside. I’m told I sound better. And people have been telling me I look better since I changed my diet. So, so far so good.

Thanks, as ever, for reading. It is good to have somewhere to come with all of this.

(PS this may sound a little eccentric but I’m also keeping an eye on my dog, who has always been nervous and highly strung. She had an outbreak of collitis at the worst of my illness, and the vet felt she was very in synch with me, and distressed and worried by my poor health and the distressing symptoms that come with GD. I’m fairly sure she’s going to calm down now I am metabolically ‘calmer’ too. She has not left my side for more than a few moments since I came home, and sniffed me very carefully when I arrived back! Given they use dogs to detect diabetes, cancer, and epilepsy I can only guess that she’s aware that my endocrine balance has changed. Given she’s such a worry wart it would make me very happy indeed if she also calmed down a little! ).

Best wishes

Rebecca
xxx

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169941

Hi Folks

I just thought I’d post the latest instalment of my pre-surgery story. I have a date!! A cancellation has come up and he can fit me in next Wednesday 21st of December. One night stay, and he said I should already be feeling much perkier by Christmas eve. I’ve said yes which means a bit of a mad scramble to get ready and make plans for afterwards but I’m taking the slot. So I shall be the owner of this renegade thyroid for just five more days and then the pesky little critter will be GONE!

I’ve cheered up about having to take thyroxine too as I’m now on block and replace, on quite a nice dose of replacement to get my levels out of my boots – 125mcg and I have to say I feel so, so, so much better and now the awful symptoms of my exclusion diet have died down I’m looking better too. I’ve already lost a stone and my mum burst into tears and said, ‘you are slowly coming back to us’. Given this is pre-op you can see why I’m hopeful!!! I do feel like I’ve had a few glimpses of the ‘real me’ again over the last week, it’s exciting. My diet is still incredibly boring as I can only add in one item per day, and I’ve been told to play it safe, but it’s worth it to feel better. No bloating or pain or wind either, and I was constantly plagued by gut discomfort.

I’ve now had all my tests, the ultrasound technician said that what she was looking at was most certainly not normal and I’ve had my uptake scan. I’m still waiting for my adrenal results but all my other tests are back. I don’t have Lupus, or coeliacs disease, and they’ve ruled out cancer. I do have very low calcium, vit D, ferritin and low parathyroid hormones (low normal) which he’s flagged as a suspected malabsorbency syndrome and possible autoimmune hypoparathyroidism (which I know nothing about and haven’t yet looked up, got enough to worry about!). My T Helper cells are elevated indicating moderate immune upset and my TPO antibodies are through the roof at nearly 900 (normal >60). Graves is confirmed with elevated TRab. Given my first doctor also tested my TPO it’s hard to see how the Hashi diagnosis was first missed. Even after I kept asking about it as I identified so strongly with the disease description.

I’ve also been copied in on all the correspondence so did feel rather vindicated when I realised his extremely long letter to my GP detailing just how very unwell I am, how serious it is, and just what a big disease burden I am carrying had also been sent to my old endo. And yet it was all done in the most respectful and knowledgeable way. I love my new doctor, he is a kind, humble and good man but he is on the patient’s side. I feel very lucky.

So there we are. I’m all set. Early Christmas presents of new wash bags and pyjamas are arriving! Oddly, after nearly two years of almost obsessive worry, I don’t actually feel scared. I just have this feeling it’s all going to be OK. I may be cursing myself for a naive fool in a few weeks, but somehow I don’ t think so.

So I shall post again when I’m up and about and well enough to write.

I really hope my ramblings help someone else at some point.

Happy Christmas one and all,

Rebecca
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[RebeccaJT]

in reply to: 18 years with Graves Disease and I am still fighting it. #1169810

Hello

I am no expert but just to chime in that I’ve just had a dual diagnosis of Hashimotos disease as well as Graves and I have hashitoxicosis which means I can turn up normal or hypo blood results and still be spiking hyper in between, sometimes four hourly causing mental, physical and emotional havoc like you describe. It has been extremely difficult to get doctors to take me seriously. I have been undiagnosed since I was 17 – I am now 39 and got dx with Graves 2 years ago – and I have been, according to my third doctor (like you it’s been a battle) dangerously sick for ten years, and very very ill indeed for the last few years.

Without a full panel of antibodies for both Graves and Hashis your doctors will not know what they are dealing with. Like you I have been fobbed off a lot. Also I am due to have an urgent thyroidectomy with a very pre-eminent endocrine surgeon here in London, UK, next month as he has convinced me that the given the long period of lack of treatment, and the sustained antibody attacks, my thyroid is destroyed and it is the INFLAMMATION in the gland that is driving a lot of my symptoms, which makes my blood results at times irrelevant. I am often turning up normal bloods and I feel very sick and INSANE at times!! I also can’t sleep, am losing my hair etc etc etc.

I believe that here in the UK that is why a partial thyroidectomy (or sub total thyroidectomy) is no longer standard procedure as the process of managing levels post op are difficult. Also the antibodies have something left to attack.

Also my surgeon is very well versed in autoimmune disease and the link between thyroid / Graves / Hashis and autoimmune gut problems and food intolerances. It could be that you have low ferritin stores which is contributing to hair loss, and low vit D which will impact mood. Again a competent doctor would run all these tests for you. I have very low levels and I’ve been told it’s to do with poor gut absorbency. This would of course also be impacting the absorbency of replacement if you are taking it.

You can read my full story (scroll to the better news at the bottom of the thread!!) on ‘What to ask surgeon re Thyroidectomy’.

I am not a doctor and I am not offering you a diagnosis but I share your frustrations and I know for me that I’ve had to really push. However, I wish I knew at the beginning what I know now – my thyroid is inflamed, toxic and out of control and in my case the whole thing needs to be removed. I am now utterly convinced of this. Particularly as I have Hashis.

I was advised to find a consultant endocrine surgeon who specialises in Graves, who has done lots of operations, and to just go for an initial consultation. I really wish I’d done this at the beginning. He makes my endo look like a toddler, the man is a walking computer brain, it was a completely different league of understanding of this disease. Plus a good doctor will refer you on elsewhere if they feel they are not the right doctor to help you. I appreciate I am not in the States on insurance, but I’ve been battling the mostly amazing, sometimes dreadful UK National Health Service and in the end have paid for some of my care privately. Perhaps before you commit $9,000 it would be worth spending $300 on a second opinion?

But do keep the faith, help is out there.

Best

Rebecca
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[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169939

Hi Folks

Well here’s the latest phase of my countdown to surgery. I saw my surgeon again last Tuesday at the main hospital in London. He was wonderful! I was in there for an hour and a half much to the annoyance of the ward sister!

Basically, to cut an incredibly long story short my Surgeon has taken over my entire care, and we’ve ditched my endo. My surgeon can’t believe that I’ve been taking ATDs for nearly two years and reporting such distressing symptoms!!! I showed him a list of twenty blood results going back over about 18 months and he said ‘it’s obvious’ … and here is what is obvious:

I have Hashimotos disease, Graves, TED, and Hashitoxicosis. He said that means that I have spikes of T3 and then drop back into hypo (this so matches my life experience over the years) – this can be "up" phases of hours, days, weeks, or months. He says my results on ATDs show a rapid and consistent fall in T4 into hypo ranges, an almost continually suppressed TSH (until very very recently) and a fluctuating T3 level. He also said my continual complaints about feeling upset, unstable, ‘mad’ etc are explained by the four hourly spikes of T3 that I’m now experiencing. This really does explain my bewildering array of physical, emotional and mental symptoms.

I have significant thyroiditis and nodules we think. I’m off for an MRI scan later this week, an iodine uptake scan and ultrasound scan next week. We are certain they will show a thyroid destroyed beyond repair – you can see my swollen thyroid through my skin!

I have finally had a very thorough battery of blood tests, including receptor antibodies, TPO antibodies, double stranded DNA antibodies, calcitonin, parathyroid hormones, T cells, etc. I also have a 24hr urine adrenal test. He wants to rule out any tumours, or other adrenal problem. He’s also testing for coeliacs disease. He thinks I have a knock on gut issue – an allergy, intolerance or autoimmune gut disease.

He explained that they’ve mapped the genome for thyroid and for gut autoimmune disorders. He said the ‘weak spots’ are the same. This means autoimmune thyroid patients often have a parallel gut problem causing issues of absorbency and vice versa. This then explains why some people have iron and vitamin issues, and struggle with replacement as the gut isn’t absorbing properly. Thus he’s allayed my fears that I won’t suit replacement.

He’s also put me on a very strict elimination diet. I’m allowed to eat potatoes, avocados, a little oil (but no frying), and a little salt. I can drink water. I can now add in a little white fish. I have to do this for ten days (I’m on day six, I’ve been in bed for most of them as I feel so awful. This is a good sign that my body is clearing out an allergen and inflammation is receding). I then have to add one food item in per day to try and track the culprit. I’m fairly sure it’s wheat but not gluten. So’s he.

I’ve come off my very low dose ATDs and then once I’ve finished the diet I go back on CBZ. After the scans, I start adding in a little thyroxine, he’s told me to play around with it, starting at 30mcg for a few days, building up to no more than 100. I’m on his urgent list for surgery and will have a total thyroidectomy at the end of January.

He’s also really heard me re work, money and career and has said I’m going to be feeling poorly for another six months realistically and to take as much pressure off myself as I can. So whilst it is not ideal in lots of ways I’m going to move home to my parents for six months and take all financial pressure off. I will give notice on my rented house this week, and put my stuff in storage and just come home for a while. I work freelance so can work from here when I can.

Sorry such a long post but those of you following my story will know just what a battle it has been to be taken seriously, and to get the right treatment. I’m very angry about lost time. He’s really heard me about my age and wanting kids, and realises this is very precious time for me. Honestly, I just want to hug him at the end of each consultation!!

He’s also said that he knows its controversial but he thinks most of my eye issues will reverse post surgery. He said he’s seen it a lot. I’m being seen at the eye hospital in early Jan but he’s told me not to have any eye procedures until at least a year after surgery. So phew! There we are. I really like my doctor, he’s incredibly humble – I can’t explain it, but I just know it’s OK to trust him and he knows what he’s doing. So we are now on the road to healing.

Thanks for reading.

Rebecca
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[RebeccaJT]

in reply to: blood test question & latest results #1169840

Catherine

I’ve been tested every two weeks since I’ve been with my second endo – so that’s over a year. I can tell you for a fact that my levels have shifted significantly up and down in a two week period. Particularly at the beginning when the thyroid was releasing it’s stored levels of hormones. I know it takes a while for thyroxine to get into your system but even so … 40mg is a very high dose ATD which is designed to shut your thyroid down entirely. I don’t know enough about replacement to know whether you are on enough thyroxine to start you up again, but two months seems a bit stingy!

They should also be keeping an eye on your liver function and your full blood count on that high a dose. You are taking a lot of drugs – indeed that is why my endo didn’t give me block and replace, as he said it was his last resort if CBZ only didn’t work as it required me to take such a high dose of drugs. Incidentally they should be giving you very clear dosing instructions for your levothyroxine. Someone else here will tell you as I don’t take it but for best absorbency there’s a best way to take your meds in the morning.

Also, this is where getting your ammo on ‘normal’ blood ranges is helpful. The UK has the widest normal ranges in the world as I understand it, so borderline hypo, or low range normal here would be declared hypo in the States and many other countries. The other thing to watch for is has your TSH moved since you’ve been on Carbimazole? If yes that can be an indication that your ATD dose needs adjusting (or I suppose that your Levothyroxine dose is too low).

Also your symptoms could be due to inflammation in your thyroid, not just your hormones. I’m not saying your doctor is necessarily wrong, just that I would have hoped she’d have listened to your symptoms more carefully.

I’m not too hot on antibodies – I know I had high TPO antibodies but I’ve never got a straight answer on this and am hanging on for the surgeon to run some tests next week. I think the key antibody for Graves is TRab but again I’m sure someone else will confirm this. I think I am correct in saying they are very useful for diagnosis (so differentiating Graves from Hashimotos disease for instance) and then for checking remission – but I think they don’t make too much different to treatment options. Remember that your thyroid is the ‘victim’ of the this disease, the real culprit is your brain, which has, for some reason, switched on an autoimmune response. The NGDF website proper (not the forum) have some excellent factsheets for download. – they might explain it better than really foggy me!!!

You could go and get a second opinion in confidence without your endo knowing and then decide what to do? The important thing to remember is just how dangerous it is to be in active hyperthyroidism – so the main thing is you are no longer in the very serious danger zone. How to proceed now might take some time to figure out. I hope I haven’t worried you further, but maybe just trust your instincts with this doctor.

Best wishes

Rebecca
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[RebeccaJT]

in reply to: Alternative ways to deal with symptoms or side effects? #1169843

Hi Nicole

Just to chime in with the acupuncture and yoga theme – I find them helpful. Just anything to calm the system down. I also have Alexander Techinque lessons and they really, really help. When I was hyper I also took L-Carnitine which seemed to make a difference to me. Beware googling but there is some interesting info about this supplement and hyper.

But also to say I’ve recently been referred to a consultant endocrine surgeon whose life’s passion is this illness, the man is a sight for sore eyes I can tell you! But he said that there is often a parallel or knock on gut issue in Graves patients, often linked to the autoimmunity side of things. I don’t know a huge amount about it, but just to say it might be worth persevering until you are taken seriously.

Also, finally, having tolerated two years of HELL on ATDs (in the UK I hasten to add, care is not as good here) it now turns out that it was the toxicity of my shrivelled and nodular thyroid that was driving a lot of my symptoms, hence feeling rough even when my levels were normal and hypo on ATDs. It turns out I’ve been hyper for at least ten years!!! I’m now awaiting surgery. My surgeon is adamant that it is, in my case, the INFLAMMATION IN MY THYROID gland that is driving 70% of my symptoms, and remission in my case is not possible.

I’m just throwing that in as a possible idea to consider. You may have investigated all this already but what I am learning is very few doctors truly, truly understand just how far reaching and serious (and subtle and interconnected) the impact of Graves disease is. I would just encourage you to keep on asking questions and not allow yourself to be fobbed off with inadequate explanations, its your body, you live inside it, you KNOW if something is not right. Looking back, years ago I knew there was something physical going on and I wish I’d been more insistent.

Best wishes

Rebecca
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[RebeccaJT]

in reply to: Worried I’m making excuses… #1169882

Hi 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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[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169937

Hiya Kimberley

Hope you are well. Yes I do have confidence in him. Bless him, he sent me a text message yesterday to say he’d got my message, not to worry he’d provide me all the tests and prescriptions I needed when he saw me next Tuesday, but he couldn’t sort the problem (by which I assume he means the deadlock with my endo that leaves me incorrectly treated) until that time – I guess when I see him next week I will by that time officially be his patient and he won’t be trampling on anyone else’s patch.

I am relieved!! However a week does feel a very long way away, I feel very unwell indeed. I have also been struggling with very powerful feelings of rage, and I’m finding it hard to even be polite. I feel very frazzled and ‘thyroidy’ even though my levels are pretty much hypo – prone to flying off the handle (not me at all, I’m a pretty cheerful person). I know this is the inflammation that my surgeon spoke of too, and my neck does feel sore and swollen, so I’m trying really hard to remain rational and not give into wonky thinking.

Also I think that my recent consultation with him brought home just how very poorly I am, just how much I’ve been coping, coping, coping, coping and just how much I have been fobbed off in the past by doctors who didn’t know what they were doing, suffering needlessly. I am angry about that and I’m trying to be a grown up and not chuck it around inappropriately but my fuse is very short.

I’m hoping the surgeon takes pity on me and squeezes me in asap.

Anyway, thanks again for listening to me. I was at one of my 12 step groups tonight and sat next to someone in the latter stages of chemo for Leukaemia (just heard they’ve got remission) and felt awestruck that they said they felt grateful they’d got the ‘right kind’ of leukaemia as it’s treatable. The chemo guy and I were next to each other when we held hands for the prayer at the end and he said "Right sweetheart, I’ll stop your hands shaking if you stop mine’ and so we stood there, two sick drunks, sober today and shaking like leaves and I thought, well it could be worse … we could be dead and we’re not, we’re still here!!!

So when I am well I am going to do my best to help someone else! There definitely needs to be more information and support here in the UK. I’m just not going to wage my one woman crusade just yet, I’m going to get my throat cut first!!! ” title=”Wink” />

Best wishes

A very frazzled,

Rebecca
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[RebeccaJT]

in reply to: Worried I’m making excuses… #1169880

HI 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
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[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #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
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[RebeccaJT]

in reply to: Husband Trying to Cope… #1169635

Hi

Poor you! What a difficult and heart breaking situation for you and for your wife! I am not married but I do share my house with a family member who has suffered from my mercurial moods now and then, it is called Graves Rage.

Just to echo other comments here. I have been on ATDs for nearly two years and whilst medically I was out of ‘danger’ I have had a lot of symptoms that won’t go away, and despite turning up ‘normal’ and hypo results, I have still felt wretched. It has taken me a long, long time to realise that there is no quick way out of this situation, this is a serious illness. However I struggled because my doctors seemed to think that all the horrific symptoms I was reporting were a price worth paying for the promised land of remission. The actual odds of remission for someone like me are slim.

I finally went to see an endocrine surgeon for a second opinion (a very, very well regarded doctor here in London, UK) who told me that in severe cases like mine it is the INFLAMMATION in the thyroid itself that is causing most of the symptoms, not the hormone levels. My thyroid has been under attack for so long, and working too hard, and sputtering along that it is damaged beyond repair. There is NO other course of treatment for me, I have to have surgery. Believe me, I really, really wish I’d come to this conclusion much, much sooner.

I appreciate that this must be an incredibly worrying time for you and your wife and I appreciate that you just want her to see sense, but I guess GD symptoms combined with denial is a fairly powerful combination!! I would just say that whilst us people with GD aren’t really ourselves when we are sick, it is still our thinking and our actions, and we are responsible for it.

No one needs to accept abuse, no matter what the cause. Perhaps setting a few boundaries might help push the consequences and reality back over her side of the line? E.g. ‘If you continue to speak to me like that, I am going to leave the room, it is my belief this is your untreated GD, and whilst I love you, I am not prepared to put myself through this’. And then, ‘I am now going to leave the room, if you continue to shout at me I am going to leave the house and go for a drive for an hour’ – etc etc. I know it’s very hard, but in all but the most life threatening situations, it is NOT loving to rescue another adult from the natural consequences of their own actions or to do for them what they can reasonably be expected to do for themselves.

I have to practice this with someone else who is ill for different reasons, and it truly is very hard work (the way out is to sit with feeling like the ‘bad guy’!!!!), but it does also allow people to take responsibility for themselves. That ultimately, is the only way adults can solve problems for themselves, by saying, ‘This is MY problem, and what am I going to do about it?’.

Much love to you both,

Keep us posted.

Best wishes

Rebecca
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