[elf]

in reply to: Anyone with TED 12-18months and considering or has had OD surgery? #1177227

jaqeinquotation wrote:

That’s the thing Kimberly, I believe that my eyes are in the active phase again but when I asked the ophthalmologist he said, “it’s hard to say, I can’t tell” . So where does that leave me? …

Then I ask myself, do I even know what the “active” phase is?

My subjective feeling was – I entered the inactive stage when all personal feelings of eye discomfort disappeared. Tearing, itching, feeling of sand in the eyes just stopped. Eye movements were still restricted (hard to look way up and way down, as well way left and right), but it also became sort of unimportant (so what if I had to turn my head, not just eyes, to look sideways?) – that is, I entered the stage of getting used to my state (not talking about the appearance, because that was still hard).

It took about a year from the onset of TED to reach that stage when I clearly understood that my eyes had stopped changing. No doctor’s advice would’ve been able to replace my subjective feeling. I started to feel that if I’d left TED alone, I would’ve looked this way for the rest of my life – nothing else would’ve kept changing.

But of course TED transpires differently. For example, I never had painful pressure or decreasing field of vision. Some people have those “sandy, leaky” feelings for 3 years. So there is no set timeline, I just hope that everyone would be able to reach the stage of clear-cut STOP as I did.

To answer the original question – was OD worth it and did I get my appearance back – I started looking better, yes, it caused a huge boost to my self-confidence. But if I were to get down to details, I don’t think I look the pre-TED way. To start with, I did OD on one eye only, and now both eyes sort of look the same (I suppose I hadn’t had dramatic bulging). But the pictures still show one “owl” eye. People who haven’t seen me for 15 years, do say my eyes look differently, and I can see that they are struggling to reconcile and re-learn my look (including my parents). But then again, 15 years would be able to cause a change in anyone, right??

Would I do it again? In a heartbeat! It basically got me back to sanity. So some details are off, but it’s nothing comparing to the general feeling that I, again, belong to the human race (and not to the monster race ). If I ever get to places with bigger hospitals, I would like to do my other eye, too.

[elf]

in reply to: My Story – Graves and Life #1173962

Hi Naisly,

I am a Canadian and of course it’s good that we don’t have to think of paying for doctors here (that one would be a straw that would have broke the camel’s back). There is definitely less choice of Drs who are pure GD doctors, the endocrinologists are trained across all endocrine systems. Here in NS the main area for endocrinologists are diabetes and weight management. But you know what, once you learn what GD is, all you will need from an endo would be getting your lab numbers to better levels (that will satisfy you in terms of your own feeling of well-being), and after that is just the maintenace that the primary Dr can do.

As you can see from my signature, I didn’t think too long about RAI, and with you set up against it I don’t really know if the ATDs could help you. A lot of those symptoms could be coming from another condition (either diabetes as you said, or peri-, or something else. Of course, in one’s body it’s all entangled and hard to figure which is which. ) My main symptoms were rapid heart beat trembling hands, rage (easily flying off the broom). In those 3 months between my diagnosis and RAI I tried ATDs and quickly understood that they would not make me feel healthy, even though they improved my numbers.

I wish you luck in finding a good Dr who would be tenacious enough to help you untangle your condition. I feel there are a few things going on. GD does happen to the take-charge people, to people who think of themselves as independent and responsible for others. It’s hard for us to shift into asking for help position, into saying “No, I can’t” position, but our bodies give up from the prolonged stress of carrying the world on our shoulders, and give up in terms of GD.

I decided to nip the disease right in the bud, and the majority of GD-ers do that here and in the US, so maybe it could be the fastest way for you to cut through what seems as a wall of hard luck.

[elf]

in reply to: Synthroid Dosage – After Radioactive Iodine Albation #1173781

Yes, my TSH has been low (quite low actually) for a while now. Free Ts are within the ranges, but pushing on the higher end. I also wondered about the long-term effects – but my personal feeling is that if anything, I need more Synthroid, not less. I, too, wondered about the usefulness of an appointment with an Endo – since he/she would be pushing for less Synthroid, trying to fit my labs into the number box. I think my personal feeling of well-being overrides the numbers. That’s how I calm myself anyway!!

[elf]

in reply to: Seeking Support & Advice #1172069

PJ – I would like to address one part of your post, about energy levels.

In my non-medical opinion, Graves strikes people who are achievers, who feel they’ve got life by the tail, who undertake a lot, carrying a horseload of responsibilities, secretly liking being admired (no! never admitting!). Who eat what they want but have excellent metabolism and thin bodies, making them feel just so slightly superior to folks struggling with weight loss. They are not necessarily A-types, but strong-headed and opinionated folks nevertheless.

I think Graves develops when the body can’t bear it anymore, but the strong-headed people haven’t been able to discern their own bodies’ cries for help, living full speed. After the diagnosis it always feels like – come on! I want to get back to my supercharged amazing self! We hurry on choosing treatment methods. We have a need to take control again – of treatment, of the life post-treatment, we need to pick up what we dropped in half-trot…

Graves is cunning that way. It makes you spend months and years on the back benches, never really letting you back on the center stage. If forces you to so ever slowly realize that the back benches IS normal life, that THAT speedy highway was your disease, not THIS slower pace. It takes time to realize that.

So basically expecting the same energy level would be the same as expecting the disease to return. Your body has corrected itself to what it feels your personal “normal” really should be. (Of course, not talking about the darkest Graves treatment months, but about the expectations for the post-treatment life).

[elf]

in reply to: Why is RAI so controversial on the internet? #1171848

The simple answer is – because people who feel better (healthier) don’t need forums or places to vent anymore. We don’t go to a diabetes or urology forums to exclaim that we have no diabetes or kidney problems. People who have had RAI successfully don’t need to hang around forums to announce how healthy they are, neither. I certainly drop by this forum only once in a blue moon. The absence of positive RAI experiences is a good thing, or there should have been proportionally more complaints on the net.

Graves RAI recepients receive a negligible doze of I131, comparing to thyroid cancer patients (10-20 mci versus 500-1000 mci), yet the cancer patients are grateful to their recovery, while the Gravers are so preoccupied

[elf]

in reply to: Remission and possibly no more children…. #1171706

It does feel like a limbo in terms of having more kids. Looking back, I wish I went ahead and had more kids before it was too late (I had 2 in a short time span, (Irish twins), which also triggered Graves), but I didn’t, as I was frozen in the Graves’ (and researching Graves) world. I regret now, but I also understand that at the time I was scared of my own health implications, as well as potential baby health implications. By the time I figured that I was out of the Graves mental pit, it was too late to have more children, naturally (artificially still possible). It is your decision, sooner or later some change and stabilization will arrive, (different for different people, for me it was RAI and forgetting about Graves).

[elf]

in reply to: Mom has hyperthyroidism- family is falling apart. #1170832

Hi Johlego, Sorry to hear about all the turmoil in your family in a short few months. As a child witnessing it it must be so painful.

I will speak from the inside of the mind of a person who used to have the Graves rages and was intolerant. The world seems to us this way. The people seem to make stupid things that we have no tolerance to. We don’t know why we become so short-tempered – we just feel compelled to not tolerate anything anymore.

Another thing is that even without Graves, a lot of women, at 45-55, feel the need to change something in their lives. (That’s why so many books written by women about great realizations in their late 40s-early 50s). Those are other hormones, the pre- or menopausal hormones talking. Having both, Graves and menopausal, combined – what an explosive combination.

There are men here who have posted on the changes in their wives after the Graves diagnosis. They, too, ask if this is the Graves behavior? Or do they really mean what they say? (for example, they start wanting a divorce all of a sudden). Is it possible to “fix” it and get my sweet wife back?

The sad truth is – nobody knows. It may be just Graves and fixable. It may be past the point of return. It may be that something has cardinally changed in this woman’s outlook. We, the strangers on this forum, won’t know. The women themselves will often find it hard to separate what’s coming from what, and why the life they seemed to enjoy, becomes intolerable to them.

((()))

[elf]

in reply to: Early peri-menopause and Graves Disease #1170074

Even though my timeline is somewhat the same (first peri symptoms appearing about a year after OD), – but I was in my mid-40s at OD . 2.5 years post-OD now, my peri symptoms are still very minimal – just harder to pinpoint on the calendar, and some weight gain, but no bloating, no hot flashes, no mood swings (yet!). I do attribute these few signs to my age rather than OD.

How is your family history of menopause and fertility? If a primary physician is of no help, maybe an ob/gyn or reproductive endocrinologist could do a full lab test and go over them with you.

[elf]

in reply to: Orbital Decompression … how did it work for you? #1169851

Hi, yes, the OD was done by one doctor, the eyelid surgery by another. The plan was to do OD on the 2nd eye a couple of months after the 1st, not bilateral, but either way is not uncommon.

Didn’t have the luxury to shop for doctors, but I would if I could. The 2nd eye’s OD wasn’t done at all as the original Dr left. Couldn’t travel to other provinces to shop for doctors. So waited. Decided with the new Dr that another OD wasn’t necessary. Did blepharoplasty on both.

The OD was not endoscopic, but the recovery wasn’t bad – watch out for the pain after the meds wear out, around day 5-6. But then it gets better. The blepharoplasty recovery took longer for some reason, about a month or 2.

[elf]

in reply to: Replacement hormones after RAI wish I knew this before #1061390

The diagnosis and RAI happened in 2005, so it’s not very recent. I am still on the same dose of Synthroid, 0.1mg, almost 6 years later. It is not necessarily so for other people who may need to change the dosage or medications (switch to Armour, for example).

I didn’t have palps and heart racing in the months after RAI, except in some surge 3 months after. Some people have similar to yours problems post-RAI, maybe they will chime in.

For the eye surgeries, OD was an overnight in the hospital, and then about 10 days looking the worst (I wore large sunglasses at work). Lid surgeries a year after that, again about 2 weeks of looking the worst, but you go to work on the second or third day after the surgery.

[elf]

in reply to: Replacement hormones after RAI wish I knew this before #1061388

Sorry to hear that!!!

I had mild eye problems starting before my RAI, too (dx in September, one eyelid started to swell in November, RAI in December). I knew in November that it was the beginning of TED, and even when the endo dismissed that, I still knew it was the start of the eye problems, Still I did RAI, because I knew my eye problems will be there with or without RAI. I just wanted to deal with at least one part of Graves, the thyroid. Had 10mci though. Maybe because of the smaller dose, didn’t turn hypo for whole 5 months. Started taking Synthroid 100 then, and it agreed with me, but I do understand that some people may need adjustment, and/or switching medication.

The floaters and black spots are not good signs, and whereas generally they wait until your eyes burn out before they do any eye surgery, it’s an emergency when your optical nerve is compromised. You may need OD (orbital decompression) asap, even in the hot stage. I waited until my eyes burned out to do OD (waited until all sensations of sand, scratchiness, dryness, teariness disappeared), and while it took a lot of anxiety to think that they are getting into your head, overall it was worth it – it helped to eliminate pain, vision problems, and appearance problems.

I didn’t have thyroid swelling though, I am not sure what that is, – sounds like some thyroid tissue is still left?

[elf]

in reply to: Postpartum and Graves #1061488

Mine is a similar story, as well – diagnosed with Graves 8 months post-partum after the 2nd child. I wanted to wean at that point anyways, so it was easier. The meds (PTU) didn’t make me feel "well", though they helped to minimize the symptoms.

I agree with those who say the Internet is filled with people who are dissatisfied. People who are satisfied with their treatment just keep on living and don’t visit boards. I rarely peek into this board.

I had RAI when my kids were 11 months and 2.5 years old. It was 5.5 years ago. In a short few months I got rid of my thick neck and symptoms. I used to visit Graves boards where opinions of an "appropriate" treatment may get contentious. But one has to do what agrees with one’s core beliefs the most. People had RAI and kept having babies. People had surgery and kept having babies. People stayed on meds and kept having babies. There is no right answer. For me, it was RAI, – because of no blood, no pain, fast, clean, done.

I did have a bout with TED though, and that’s what stopped me from having any more children. TED involves a lot of waiting (to burn out, waiting for surgeries), so I got too old to have babies in the process. But not because of my Graves treatment method.

[elf]

in reply to: Physical and Pyschological effects of GD/TED #1062713

Hi FindingMe,

I guess I am confused: what used to stop me from being social, was the psychological effects of how I looked. You say you came to terms with how you look (and with mood swings), but can’t "un-hermit" yourself still. It seems to me that there has been no real "coming to terms" maybe.

I tried to come to terms for years, (between the end of my hot phase and OD). But couldn’t. Only OD gave me almost immediate psychological boost. One day, I caught myself – wow, I am not self-conscious anymore. And since then, I got a job, went to school (again), and am living just like any next person.

My hermit years coincided with my staying at home with my small kids, so it was a bit fortunate, considering. What are your prospects of getting eye surgeries?

[elf]

in reply to: Questions about Ted #1063689

Hi Susan,

I waited for so long to do my surgeries because of combination of my doctors availability, and my need to make sure that I was really in the cold phase. If I lived in a more populated place, my surgeries would have been done faster.

Do you have any uncomfortable feelings in your eyes (grittiness, sandy feeling, or your eyes cannot stand sun/wind/air-conditioning/cold) ? Because I had all those feelings, and they all stopped exactly 1 year after the start. That’s how I knew I was out of the hot stage. I had tears streaming at night for 6 more months, that’s why I didn’t do the surgeries right away, waited some more. Then it was a problem finding a doctor. After the OD, the doctor left. I waited for a year until another doctor arrived, for lid surgeries.

If you don’t have any uncomfortable feelings in your eyes, just the puffiness, then you are in a better shape than I was. Maybe that’s why your doctors say your puffiness may disappear, – after you find a correct Synthroid dosage. In my experience, though, my puffiness never disappeared. Though my Synthroid dose was the right one from the start.

[elf]

in reply to: Questions about Ted #1063687

Hi Susan,

Sorry to hear that you’ve started TED. Your drs are right, there is not much that could be done right now in the hot stage.

I didn’t do eye surgeries right after my hot phase ended, because at first I was trying to understand what I was the most comfortable with, – living the rest of my life the way I looked, or taking a risk allowing someone to go straight into my skull. Because I had (still have) little kids to think about. Eventually, life in the shadows (refusal to have pictures taken of me, shying away from face-to-face contacts) got to me to the point that living full life became the most important. That realization came about 1.5 years after the end of the hot phase, and yet another year was spent going through preliminary tests and waiting for the surgery. After the OD on one eye, the Dr talked about having the other eye’s OD two months down the road, and eventually lid surgeries, but everything was being delayed by her busy practice, and then the bomb was dropped on me that she left. Another orbital specialist was hired a year after my OD, just this last August. We decided not to do the second eye’s OD since the protrusion there is insignificant, both eyes look about the same.

I know how hard it is to be in the center of the hot stage, and not knowing when it is going to end, and how far it is going to go. It’s hard to just wait, as well. I was a stay at home mom during my hot stage, and that helped, – I do feel for people who have a job, struggling with their eyes that are out of their control.

My TED started shortly before my RAI, – about a week before my RAI I was asking my Endo why my one upper lid was swelling up, and whether it was TED. So I don’t really think that RAI was a trigger for my TED, – a contributor, maybe, but I know I would have had TED anyways.

[Author]

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