[RebeccaJT]

in reply to: methimazole for ever? #1062723

Hi

I am in England (so I’m in Europe ” title=”Smile” /> ) and I can vouch for the fact that we definitely do do RAI here (can’t say for France but definitely in England). I am on Carbimazole only although I have discussed block and replace with my doctor. He said that block and replace was not a long term option because of the high quantities of drugs involved, but that carbimazole only (ideally a maintenance dose of 5mg per day) could be used for ten or twenty years with no problems provided that the patient tolerated it well and was monitored regularly.

I also have eye disease (TED) and I am seen by an eye surgeon – the eye surgeon if very keen for total thyroidectomy, my endocrinologist is not! I think sometimes its just the different perspectives of different kinds of doctors – surgeons typically are going to see surgery as the solution, and doctors are perhaps going to look at other options.

I am not giving you any advice here, as said earlier, I am just another patient. However in my case my endocrinologist told me that surgery should be a last resort as it is an irreversible procedure and in his opinion, because of my case history, he felt that I would be one of the few people that did not tolerate surgery well, and would not feel 100% restored to health on synthetic thyroxine. This is not the case for everyone, just in my particular case. RAI has also been ruled out in my case as I have TED and the risk to my eyes is, in both my doctors’ opinions, too great.

Therefore, despite having some doubts along the way, I have decided to go with carbimazole only for as long as it keeps me in normal ranges and functioning normally. Also my doctor said I have a 45-50% chance of remission. 1:2 are pretty good odds for me at the moment, and I’m willing to give remission a shot before looking at more aggressive treatment options. However, I have had moments where I have thought I couldn’t stand another day feeling as ill as I did and surgery looked very tempting!! I’m happy to say that I feel a bit better and am feeling more determined to tough it out on drugs.

I’m not sure that helps you but just thought I would share my experience.

Best of luck

Rebecca

[RebeccaJT]

in reply to: new to GD/probably electing surgery/looking for support #1065480

PS meant to say that the last few days I’ve had pain in my thyroid (not my throat inside, in my neck) and if I stand in front of the mirror and swallow there is a definite butterfly, but much more pronounced on the right side. I’m at the GP tomorrow (but to be honest, he just says ‘ask your consultant’) – do you think I need to call endos secretary?

Thanks

Rebecca

[RebeccaJT]

in reply to: new to GD/probably electing surgery/looking for support #1065479

Thanks Bobbi

I know, that’s what i was thinking but there do seem to be an awful lot of people who are told as their bloods are ‘normal’ they are then imagining all their terrible symptoms – and who do not seem to regain their health, plus there are those who have RT3 and conversion issues etc etc. I think what my endo meant is that as I am so sensitive to hormonal changes, he reckons I’ll be one of those who don’t settle down on synthroid. I know these people exist as I’m also part of thryoid patient forum in the UK which mainly deals with these issues, and I think perhaps I’m scaring myself with the horror stories of people who lose all their hair, gain stones and stones of weight, lose their jobs, and lie in bed all day with fybromyalgia /chronic fatigue / ME etc etc etc.

Like the original poster on this thread, I am scared that once I’ve done surgery I won’t be able to undo it if it transpires that I’m one of the unlucky few.

That said I’m also driving myself mad trying to weigh up all the options, plus the decision is going to be made for me fairly soon as I simply can’t keep going feeling as bad as I do right now.

Thanks for the good wishes, I know I’m lucky and I worked hard to get here – I just wish I could actually get to enjoy my sobriety rather than battling illness the whole time.

Thanks

Rebecca
x

[RebeccaJT]

in reply to: new to GD/probably electing surgery/looking for support #1065477

Hi

I know this is an older thread but I am so glad I found it. I so identify with your struggle. The only difference is I am not married and planning a baby but I am 38 and hoping not to be single or childless for ever. I also have had the same emotional and mental issues (although it now appears that some of that was untreated GD – definitely trembling in my arms and legs which I was told were the neurotic symptoms of an anxiety disorder). I didn’t take antidepressants as I’m a recovering addict and try not to take pills where I can. I’ve been on ATDs for six months, I have TED and my levels are not stabilising. I feel dreadful and like you – I can’t stop thinking about what to do / worrying about what will happen to me / turning over the different options in my head. I also hate myself for being so self-centred, it’s not like I’m dying of cancer afterall!!!!!

My endo is the head of dept at a large university teaching hospital in London and I am also seen at a major London eye hospital. Both are excellent. However, I feel dreadful. I have been on ATDs for six months – varying doses up and down and I can’t seem to get stable. I feel hyper again now after a month on 45 and 40mg and 3x40mg propranolol- blood test tomorrow. But to be truthful if they tell me to ‘do another month’ on a higher dose, I really don’t think I can do it. I am ashamed to admit this but I was eight years clean and sober yesterday and I know I have a huge amount to be grateful for but as I lay in bed last night at 4am with my whole body trembling, with my heart thudding in the dark, too wired and scared to sleep, I thought, ‘what’s the point?’. The last two months these dark and scary thoughts have been v hard to live with. I know its my hormones as they go away on the odd occassion where I pass through some kind of normal level on my way to hypo or hyper.

My endo says he feels I will be one of the unlucky few who won’t tolerate levothyroxine (synthroid) and has warned me not to rush at surgery. Also as doctors here can’t prescribe armour that leaves me with the choice of buying it illegally off the internet and dosing myself if I don’t tolerate sytnthetic meds. (I have posted elsewhere about this).

HOwever, he says surgery is still a good option if I get to the point where ‘I can’t stand it’ on ATDs. I am nearing that point, I truly feel dreadful – depressed, sometimes having suicidal thoughts, tired all the time, unable to work at my job (I am self employed, so like you I am left to motivate myself alone at home a lot, I am a fundraising consultant). My clients are starting to grumble, my friends don’t understand (thyroid is not ‘serious’ and I’m taking drugs)and I just cry and cry and cry!! It feels like someone died, I am so tearful all the time. I kinda feel like the old me died actually, I really miss myself. I’ve been feeling ill / hyper for at least 2 years, thinking it was anxiety disorder (I am angry it got missed), probably longer, and underneath the wired feeling I just feel utterly exhausted. I checked my diaries, my eyes first swelled in August 2009, and I definitely had the shaking, trembling, tight heart, panic attacks, actute anxiety for about four years before that.

Like you RAI is [u:2yrwz7lh]not [/u:2yrwz7lh]an option – mentally, emotionally, physically or ethically if I’m honest. I know myself, I can’t do it. TED doctor and endo also don’t want me to have it.

I feel trapped between a rock and a hard place and I’m starting to think that even if I don’t go back to feeling how I was before GD, anything has got to be better than this. Am also agonized by all the same dilemmas as you, plus I’m now starting to think I may have Hashis too, need a full antibody screen as I’m not clear. I try and pray for acceptance but it’s so hard. Even my GP’s bedside manner is now off-hand, the nurses too, like they are annoyed I’m sick! I just don’t feel that anyone is listening to me when I say, ‘help, I feel at the limits of what I can endure’. I am scared they just think I am a mental patient, and I’m also scared as some days I just feel INSANE…

Basically what I’m saying is I can’t go on like this – I either need some progress with ATDs or I need to make a choice to do something more aggressive. I think surgery is looking like a better and better option for me. I too read Elaine Moore and whilst I found bits of it helpful (and I am also doing yoga, reike, massage, reflexology, and acupuncture) it also made me scared and guilty for wanting this torture to be over. But thanks for being so honest in your posts, it really helped. I have also done lots and lots of research so I’m fairly well informed about it all – I just don’t know what to actually do!

Thanks

Love

Rebecca
x

[RebeccaJT]

in reply to: Graves, TED, throidectomy and steroids???? #1063267

oops seemed to have posted the same information twice, sorry! x

[RebeccaJT]

in reply to: Graves, TED, throidectomy and steroids???? #1063266

Hi Folks

I just wanted to check back in and thank you both for your posts and also update you with where I’m at. First the good news, I have stopped smoking entirely and was seen at the eye hospital last week where they were delighted with the improvements in my eyes and said more than any medical procedure or drug, smoking cessation was the biggest thing anyone could do to help my eyes. Pleased and proud of myself for that! I definitely have more lid definition (my eyes are less staring, the lids aren’t pulled back so far) and I think protrusion is better. They don’t want to see me again until May (although will be querying this date change, it was originally March, just to check the good old British NHS isn’t being stingy with resources!!). Doc said that whilst she couldn’t rule steroids out as my thyroid levels aren’t yet stable so my eyes are still changing with the swings, based on her current assessment of me I wouldn’t need steroids. PHEW! I am terrified of taking them, I know myself and I jsut know that I wouldn’t cope mentally with the side effects. She also said Prednisone is hard mentally to bear.

The not so good news is my double vision is worse and I’ve worked out (and this has been confirmed by both my endo and the eye surgeon) that it is directly related to my shifting thyroid hormone levels. I’m still not under control and I’ve been on 40mg carbimazole for several weeks now to no avail. Endo says biochemically I am ‘about right’ for this stage in the process (T3 8, T4 22 (up from 17 on 30mg, T3 didn’t change, TSH 0.03) and it’s a marathon not a sprint and as I’m so incredibly sensitive to any hormone changes they need to bring me under control gently and slowly, and run me at the top of normal range where I’ll feel happiest. Eye doc also says the worst thing possible for my eyes is being allowed to go hypO so endo is also listening to that.

Endo reckons that I will not tolerate surgery and in his opinion (he is a good and experienced doctor, at a leading teaching hospital in London – ie he’s one of the best in the country) I will most likely be in the significant minority (its about 10%) who do not tolerate synthetic hormone medication. He hinted at the whole Armour situation here and said, ‘medically that would leave me with very few options to help you’. He said my body hates its hormones being tinkered with and he feels that surgery is not the right choice for me and I should hang out for remission on ATDs. I’ve yet to ask him about PTU.

I am struggling greatly with weight gain (two stone now) and hair loss – both hugely impacting my self-esteem. I am also very agitated and anxious. I am incredibly tearful too – I cannot stop sobbing. I feel very down and sad and I’m losing hope that this treatment is going to work. Whilst I’m pleased about my eyes, I’ve now been on this hormone rollercoaster for nearly six months and I’m reaching my limit of what I can take. I’m also a recovering addict and I need to be careful to maintain my emotional balance so my sobriety is not put at risk. Plus as other people have posted, doctor and I worked out that I’ve probably been undiagnosed for about five years so have had years of anxiety, panic attacks and supposed ‘mental problems’ (believe me it was torment) for years and years and I’ve really had enough. I’m trying very very hard indeed to maintain a positive attitude but I’m finding this illness distorts my thinking and my feelings so that I almost feel a bit trapped inside it. I appreciate that self-pity won’t help me but I just feel very overwhelmed with it all at the moment.

Endo says surgery is still a choice if ATDs dont’ work but at present he seems to be shrugging off my symptoms with ‘you are doing fine’. I don’t feel fine and I’m starting to feel a bit desperate.

Also I’ve not really got to the bottom of whether I also have Hashis – I have a very high TPO antibody reading, others are negative although I don’t think my TRab antibodies have been tested.

sorry that is all a bit jumbled, I’m very tired today (brain fogginess is also at critical levels too).

Some light at the end of the tunnel would be greatly appreciated and thanks for all your support so far.

Thanks

Love

Rebecca
x

[RebeccaJT]

in reply to: GD is controlling my life… #1063489

Hi Krystal

I just wanted to empathise and sympathise!! I’m a fairly new diagnosis (May) although I’ve known something has been wrong for years, and my eye disease showed up in December. I’m am now trying to get level on ATDs and its proving to be tricky and is taking more time than I thought it would. Not helped by the eye doctor who diagnosed me (to be fair it was a tricky diagnosis and I was lucky he realised I had TED and tested my blood) but he told me that ‘you just take a pill and feel like a new woman’. Obviously, this wasn’t true and he gave me very false expectations.

I understand about your work and I too ‘miss myself’ – I was also very active, cheerful and outgoing. I am currently having to try and be very gentle with myself and also to be patient.

For me the hardest thing (and I’ve had to do this with other issues in my life – for instance I’m now a recovering addict and have been for 8 years) is ACCEPTANCE. For me this is a process that is very much like the grief process. I went through it with my addiction, and I’m going through it with my GD and TED. It seems to follow the bereavement process: – Denial, Anger, Bargaining, Sadness, and then Acceptance. It doesn’t go in a straight line, I take two steps forward and one back.

The hardest changes for me have been with my body – my weight has fluctuated, and obviously my swollen wide eyes have changed the look of my whole face. I’m 38 and single (and would rather not be!) and it is very hard to feel like your body is not your own. However, if I look for the blessings in this, GD has shown me that I still have self-esteem issues around my body weight and self image. So I am trying to be grateful that GD has brought to light an area where I still have some more work to do. I have a really nice reading on self esteem that I’ll post here:

"Just as you are, you are enough. Just because you were born, you are precious. Your preciousness or worth is not up for debate. You were born an amazing creature filled with wonder and spiritual value. There is no question about whether you are or aren’t of value… Healthy self-esteem is the internal experience of your own preciousness, awareness from the inside that you have worth. This worth is separate from ANYTHING you do, how you look, or what other people in your life say or do to you or about you" [Pia Mellody}

I am trying to use this to remind myself that I am not my job, I am not my weight, I am not my activity level, I am not my appearance, and I am most definitely NOT my illness. I have always been a bit of a perfectionistic ‘human doing’ rather a ‘human being’. I’m still a work in progress! On my good days I am trying to see my GD as an opportunity to take better care of myself, and to love myself exactly as I am and to try and just ‘be’ and stop constantly driving myself – even before I got sick, I was exhausted! Don’t get me wrong, I have bad days (and have the posts on this forum to prove it!!!) but I’m trying to see GD not as a punishment but as a chance to grow in other areas; that maybe its not a physical breakdown, but a bit of an emotional and spiritual breakthrough? What is it you say in America, if life gives you lemons, make lemonade?

But just to reassure you, it sounds like a lot of what you are experiencing is just the symptoms of GD. There are some great publications for download on the GDF website – just go to the publications page. There is one called ‘What is Wrong with Me?’ – in fact have given this to my GP – which I found helpful, and others about living with the emotional ups and downs of this illness. There is another about how GD is often misdiagnosed as anxiety disorder and other mental problems. My endo said, ‘You are not mad, its just Graves’.

You are not alone, hang in there. Maybe just try and take it one day at a time. I’m trying not to project about what MIGHT happen, but just deal with what is in fact actually happening TODAY. That stops me sending myself crazy!

Take care

Rebecca

[RebeccaJT]

in reply to: How to Choose / Tapazole/Thyroidectomy/RAI #1063566

Really helpful discussion. I’m pondering all the same questions John.

Can I ask, what are the possible implications of surgery for TED? A friend of my mum’s had surgery and had to take steroids as she had serious eye complications. She was a very petite woman and she looked horrific, she trebled in size and was very very ill. I read on here that someone said they’d have to pinned down and forced to take steroids again, they felt that strongly about it. So that bit is scaring me.

So are are eye complications rarer or about the same as they are for RAI? ie) which one carries less risk for the eyes?

Thanks

Rebecca

[RebeccaJT]

in reply to: Double vision – help!!! #1063527

Hi Folks

My doctor rang me at 8pm last night to deliver the lastest results in person – I’m going hyper again. I really don’t understand this but this will be my second relapse on carbimazole – last time on 10mg, this time on 20mg. Sounds like my thryoid is fighting against the treatment!

I think the next move is what we call ‘Block and Replace’ – high dose ATDs and synthetic thyroxine – not sure whether you call it the same thing in the States? I am nervous about this course of treatment as I’m starting to think if I have to go through more months of trying to get my levels right, watching my energy drain away, only to relapse again maybe I should start thinking about surgery and just getting the whole thing over with. Also there is huge resistance here to anything other than synthetic T4 – I hear my endo is open to T3 but he’s not told me that himself – but I’m worried about whether I’ll tolerate all those meds. I’m sure you all understand!!!

I don’t know – hoping to see Endo next week to discuss what we do now, but GP thinks Block and Replace. I’m not sure what the implications are for my TED – a few of the Graves patients I know in England say that B&R was the best they’d felt for a long time so maybe its worth a go. Endo doesn’t want to try RAI because of my eyes, I think surgery can also aggravate TED.

Anyway, I think perhaps the lurching from hyper to hypo to hyper to almost hypo to back to hyper is perhaps what has made my eyes feel worse, alongside the inevitable changes that must be happening during ‘hot’ phase. I’m also utterly and completely exhausted, I’ve never felt so tired in all my life – trying to stay positive (eyes bit better today have avoided the patch so far!!!).

Thanks for reading,

Rebecca
x

[RebeccaJT]

in reply to: Double vision – help!!! #1063526

Bobbi

Thank you for such a comprehensive reply! Incredibly helpful, thanks.

The thing is I think I am hypO – I think I’ve been over treated (again!) and am waiting on blood results (should be able to collect them from the GP in about an hour) but I have all the other hypo symptoms including weight gain, emotional rollercoaster, brain fog, poor concentration, heavy period, wanting to sleep all the time, feeling the cold, and drop in body temp. I’ve been sent hypO before on carbimazole so think that’s what’s happened.

I will ask about smoking cessation (most products are free as big Government drive to get people to quit) but I’m a bit wary of psych meds of any kind as I’m a recovering addict so I have to be careful what I take (you know us addicts, we LOVE taking stuff!) even if its just because it starts messing with my head, and my wee little voice starts saying, ‘oh dear, you feel so ill, you’ve already had a little pill, why not take a little drink or another kind of pill, no one will know’. Plus here I think the drug you are referring to is called Champix or Zyban and my buddies in 12 step meetings have reported having a tricky time tolerating it. I only did 12 days of betablockers when I was really hyper for the same reason, I just don’t tolerate stuff very well. I can get inhalers, gum, patches etc etc free from the doctor though. I will do that asap.

Hanging on for my eye referral – I’m being seen at Moorfields which is a very famous eye hospital here, in London and the guy I’m seeing is a TED specialist so I’m hopeful that I will have good care. They called me in as soon as they got my referral letter so I’m pleased they are taking it seriously (finally, it’s been such a battle to get the right care!).

Glad to know that I’m on the right road though with the eye patch (although did catch sight of my reflection in the mirror – overweight, I look like hell as I can’t see to do my hair or apply make up and then I had my pirate eye patch – I cried for an hour!) – my friends are making lots of jokes (Ah ha! Jim Lad! being the favourite ” title=”Very Happy” /> )

Thanks again, I’ll let you know how I get on with the GP / Endo.

Best wishes

Rebecca
x

[RebeccaJT]

in reply to: Hello from England, struggling with treatment #1063534

Hi Bobbi

Thanks very much for taking the time to write back. It’s just good to know its not just me. No one’s really said anything re exercise at all and I’ve been told that diet is ‘mind over matter’ and that if I’m gaining weight its because I lack ‘self control’ – well that was the last endo at least, have not yet got to this subject with the new one as I was so hyper when I saw him I think the immediate priority was to get me off the ceiling. I’m eating about 1,500 calories a day of highly nutritious food – so small portions of good quality protein, legumes, grains and I’m seeing a medical nutritionist who has me on something called ‘The Holford Diet’ which is based on ‘optimum nutrition’. So I have quarter of a plate of protein (if that), quarter of complex carbs (quinoa, brown wild rice, sweet potato etc) and half a plate of salad or veg. I’m eating lots of berries (low sugar) and low fat live yoghurt too. I’m taking zinc, magnesium, B vits, Calcium with D, vit C, Omega 369, and something called Korolex to treat candida. I’m off wheat and sugar, trying not to drink caffeine and I have cut down smoking (this last I realise I have to give up asap if I want to help my TED but I’ve been feeling so awful, I did try, but just couldn’t handle the double whammy of withdrawal and GD!).

I’m feeling a lot better today – I was very tearful all day Saturday and yesterday but I called up a friend of mine who had a bad car accident and damaged her back and she’s also on the slow road to health, its totally interupted her life, and we went for a coffee. I just needed to vent I think. Just to have you and her say ‘yes its hard’, ‘yes I understand’, ‘no you are not in control and its OK to feel upset’, ‘yes it will get better’ etc etc really was the tonic I needed.

I came home and did my Yin yoga DVD – very gentle, long held postures, no jumping around and I walked my dog (good autumn sunshine yesterday) and had a long soak in the bath and then watched a DVD (with one eye shut, in my shades!!!). Managed to meditate too – that helps.

As with everything in my life I think the answer is acceptance and surrender to WHAT IS, rather than trying to will it away or deny it. Bit of a process though!!! But done it before so sure I’ll get there.

Thanks again for your response.

Best wishes

Rebecca
x

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