[RebeccaJT]

#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

[Bobbi]

#1065478

I know of no body of research that suggests that people cannot tolerate the active ingredient of levothyroxin. None. Levothyroxin is chemically identical to your body’s own T4. Period. It is used precisely as the body uses T4. The only side effects are hyper symptoms if you are getting to much of it, and hypo symptoms if you are getting too little. There ARE some folks who are allergic to one or more of the inert ingredients that are used to make the levothyroxin into pill form. The most typical problems are either lactose intolerance (one brand uses a lactose ingredient), or (and more common), a reaction to the food coloring that is used to distinguish one dose of pill from another. There are pills made without the food coloring, however. But intolerance to one brand does not mean an intolerance to levothyroxin, the active ingredient, and there are lots of brands to try.

I think you should be proud of your accomplishment, staying clean and sober for eight years. Addictions are hideously difficult to overcome. Good job, Rebecca.

[RebeccaJT]

#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]

#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

[lhc11]

#1065481

Hi Rebecca,

Wow, this was a flash from the past (mine, I mean, not yours)! (And believe me, looking at my old posts–though I couldn’t bear to really re-read them–that is how it feels, which I hope gives you some hope right there). Oddly enough, I have my post-surgery 6 month (well, 7-month) follow-up in person with my endo later this afternoon. I don’t know if you’ve searched for my username (lhc11) and found any of my subsequent posts, but they might comfort you if you do. I am someone who, it turns out, did fantastically through surgery (even my calcium levels stayed stable) and recovered quickly. Today, I take synthroid and vitamins but no antidepressants or anxiety meds of any kind (and in fact that was true right after the surgery too), and with the exception of another autoimmune issue that has raised its ugly head (it’s proctitis, so "head" is not exactly the right word) and my continued unsuccessful attempts to get pregnant (the issue is age, not my thyroid per se), I am in excellent health.

You are dealing with SO MUCH and as you know, I completely understand it as I have been there. It is so, so, so hard, and your worries about how your body might respond to Synthroid are legitimate, given the situation with Armour in the UK. That certainly complicates your choice, though it sounds to me like perhaps you are coming closer to a decision. All I can tell you is that I was SO worried and scared–as you can see from my first posts–and everything is now FINE. Yes, I’ll be asking my doctor for a new levels test today–and maybe FT3 as well just to be sure about things–but again, I’m in excellent health and have NO REGRETS whatsoever about my decision to have surgery. I think you need to tell your doctor exactly how you are feeling, i.e. at the end of your rope with ATDs–and really push him on the Synthroid issue. Before surgery, of course, your levels do have to stabilize (which they don’t, or not as much, on RAI, at least not from what I’ve read on another thread). Please hang in there. You are obviously very strong and you WILL make it through this, come out on the other side, and one day post here to someone else in the depths of their GD experience. You might also want to start a new thread as you continue exploring your options just so others on here really get that it’s YOU we’re now talking about, not me.

all my very best,
lhc11

[Bobbi]

#1065482

One thing to keep in mind, Rebecca, is that the many, many people who get definitive treatment (whatever type) and get well again do NOT populate these online boards. The online boards are skewed towards recently ill, and those people who for one reason or another are not doing well. Sometimes, it is the additional complication of the eye disease. Sometimes, they just don’t (for whatever reason) "feel well." But if you will go back through our archives and look, the stories remain the same. The cast of characters, however, changes every four to six months or so. If you look at posts and go to six months previous, and six months before that, you will tend to see a whole different list of posters. The NGDF likes to have healthy people as "moderators." Kimberly, Ski and I fill that role at the moment. We can provide you with perspectives that other boards don’t have. We’ve been where you are, we know how you feel. But we got well again. One of our previous moderators used to sign all of his posts with "I have Graves, and life is good." It’s really helpful to have that perspective.

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