[RebeccaJT]

#1018252

Hi again

Thank you to everyone who replied to my original post (Hello from England…) it was great to hear from you and very reassuring. I feel better for having the support of people who have been there. The reason for this post is I am writing this with a makeshift ‘pirates’ eye patch over one eye. I am awaiting blood results today, and my endo is promising that blood tests being reassuring, I can go onto maintenance dose of carbimazole 10mg.

However, having just ‘come down’ off my hyper relapse (poor care by previous endo caused it, now with new endo) I’ve had to do the initial course of high dosage of carbimazole again. So I did 5 days 30mg and have now done one month 20mg. I started with a T3 of 9.7 (or probably higher by the time I was seen) and two weeks ago it had fallen to 5.4. I’m waiting to find out what it is now.

However, I’ve noticed that my double vision first got considerably better (ie I had about a week with no double vision at all, or just a short patch of it just before bed when I was tired rather than it starting from when it got dark) and over the last ten days it has been deteriorating considerably – I’ve had shorter and shorter periods of time when I’m free of it – mid morning to mid afternoon.

In the last two days its been constant – so I have no respite at all. Its making me feel dizzy, nauseous, and I am bumping into things, dropping things (because I’m missing surfaces or things aren’t where I thought they were) and obviously I can’t drive in this state (I live in the middle of nowhere and need a car!).

My question is this – I think this is related to dosage right now. I appreciate my eyes are still changing but I think I’ve now been over treated and sent hypO or nearly hypO. Will my eyesight get a bit better once my levels are stable?

I’m really scared as I’m self-employed and if I don’t work I don’t get paid. I’m also supporting my brother at the moment who has been seriously ill. So I feel doubly anxious as if I go under, so does he. Also I have no sickness insurance and I’m not entitled to any welfare benefits if I can’t work. Also, from a personal point of view, I like my job and its well paid, and I don’t want to lose it.

The eye hospital called yesterday and I’m due in to see the TED surgeon on 17th Nov but if I could even have five hours a day when I can see normally I could keep the wolf from the door.

I said on a previous post that I smoke -albeit less than I did – and realise I’m going to have to bite the bullet so have stockpiled nicotine gum – wish me luck!!

Any ideas?

Thanks

Rebecca
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[Bobbi]

#1063525

It is possible that your double vision issues are being enhanced by your current levels of thyroid hormone, but double vision is NOT CAUSED by your thyroid hormone levels. When we have thyroid eye disease, the muscles behind the eyes change in size and in flexibility. There are three pairs of muscles that operate each eye, and they must work in a synchronized fashion for us to have single vision. If any of the muscles is incapable of moving well together with the others we can get double vision. With my own TED, I went through a period of about two years (give or take) where I had intermittent double vision — i.e. some of the time it was OK, but looking in some directions would throw things off, OR the vision would just waver in and out of double. It was a horrid time. Then, when the "cold phase" of the disease set in, double vision issues minimized. The only time I get them now is when I am very tired, or hypothyroid. Why? Because fatigue, or too low a level of thyroid hormone work against the muscles in the eyes functioning properly.

So — what to do? First thing is an eye patch: you cannot have double vision if one of the eyes is patched. It takes some adjusting because using only one eye causes us to lose depth perception. But you can learn to accomodate the change if you practice. If you are patching your eye, either with an actual eye patch, or by putting gauze and tape over one lens of your eye glasses, ALTERNATE the patched eye. You will undoubtedly find that it is more comfortable to live with a patch on one of your eyes than the other, but if you don’t alternate the patched eye, it is somewhat possible to weaken it, which it would be better if you didn’t do.

Second thing: get adequate rest and recreation. The better your overall health, the better your vision will be (even if it is wonky).

Third thing: talk with your doctor about any anti-smoking aids you might use. In the U.S. there is a prescription drug that I found totally helpful. It is a type of anti-depressant, actually, that researchers have found works on the part of the brain that is addicted to nicotine. What it does is put in a wee small spot of clear thinking when you get the urge to smoke. At least that’s how it felt to me. I would feel the urge; my brain would tell me that "its OK to have just one, you’ve had a stressful day, dear." But that wee small bit of clear brain would allow me to think, "No, not this time." Or, more helpfully, "There’s no such thing as one, when it comes to an addiction." I tried lots and lots of ways of stopping, but the drug, which I only used for a couple of months, got me through the worst of things. So if your docctors there in the UK can prescribe something like this, it might help. I do wish you good luck.

[RebeccaJT]

#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
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[RebeccaJT]

#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
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[Kimberly]

#1063528

Hello – You are correct that Block & Replace is not used commonly in the U.S.. I believe the concern is that the higher doses of meds may be correlated with a higher rate of side effects, such as liver and white blood cell issues. Keep in mind, though, that you can monitor for liver/WBC effects with a couple of blood tests: the Complete Metabolic Panel and a White Blood Cell Count. And the side effects can usually be reversed if the condition is identified and the meds are discontinued ASAP.

Although being hypO does not directly *cause* the eye issues, I have seen a couple of studies where the hypO state is *correlated* with exacerbation of the eye issues. So it’s definitely important to monitor thyroid hormone levels frequently and make dosage adjustments as necessary. We just got back from our annual conference in San Diego, and all of the eye doctors that presented stressed the importance of smoking cessation for patients who have Thyroid Eye Disease. No, it’s not a guarantee that things will get better, but the *worst* outcomes with TED usually occur in smokers.

Doctors still can’t completely agree on the link between Radioactive Iodine treatment and TED. In one of the more famous studies (Bartalena et. al. from 1998), outcomes were compared for patients whose hyperthyroidism was treated with (a) RAI, or (b) RAI + prenisone or (c) methimazole.

About 15% of the RAI group experienced a worsening of eye symptoms. Of those patients, about 2/3 later improved, but the remaining 1/3 required further treatment for their eye disease. About 4% of the methimazole group experienced a worsening of symptoms, and 0% of the RAI + Prednizone group experience a worsening of symptoms. (Of course, steroid therapy has its own risks, so this is not a decision to be taken lightly).

One doctor at our conference (from Europe, where they are less likely to recommend RAI) said that he would not recommend RAI for patients with active TED. Another doctor said that she would recommend a course of Prednisone for “high risk” patients who are undergoing RAI.

By the way, one factor that makes patients “high risk” for eye complications after RAI is smoking – so we’re back to the smoking thing again. Sorry to be such a nag! ” title=”Very Happy” />

Best of luck – please keep us posted on how you are doing!

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