[elf]

in reply to: How long did it take you to go hypo after ablation? #1067024

5 months.

But, we need to consider one’s goiter size and the uptake scan result. (Which I don’t remember, – something like 60-70%?). My dose was 10 mci. I was eurothyroid, taking no medications, for 5 months after RAI. Had hyper spike 3 months after RAI.

[elf]

in reply to: Living through Graves disease #1067083

Wow, what is going on with your account? ” title=”Very Happy” /> I sent the message twice. I’ll post the link here:

http://home.rica.net/deecee/information.htm

[elf]

in reply to: Living through Graves disease #1067081

itslaksh wrote:I know hyperthyrodism causes lot of emotional problems making the sufferer easily upset and irritatable. My husband has physically and verbally abused me during those periods and behaved extremely erratically. He is normally a very mature and calm person….I feel depressed, angry, helpless, humiliated and sometimes just plain unlucky whenever I think of those periods.

Unfortunately, your words describe what happened in my life and my mental state in a couple of years leading up to my Graves diagnosis and a time after that, — until my thyroid was removed. Yes, I was verbally and physically abusive to my husband. He must have felt "plain unlucky" then, too. How did it feel? A lot of anger at the "stupid" behavior of my husband, a lot of intolerance, and the amplitude of anger going above and beyond of any humanly reasonable level. I couldn’t stop myself, I didn’t even think of stopping since I was "defending my right to be right", even though things were broken in the process.

Medications helped me to get my thyroid levels and my heart rate in the ranges, — however they did nothing to my mental state. It’s curious how in some people ATDs help to get the hormones AND the mental issues under control, and in others – not. The mental/emotional manifestations appear on a scale even among Graves patients, and even within the Graves community I feel like many people can’t understand me as their anger never did go to the extreme levels, like abuse. Some people have it as a mild anger, when a gentle reminder of a spouse is enough, – some have it as anxiety, as in inability to drive and fear of crowds. Some get fearless and careless and abusive, – like I was.

I did a three months course of ATDs after my diagnosis, and I knew it was not helping me mentally, though physiologically it had helped. Whatever was disturbed mentally in me, kept staying disturbed. So I opted for RAI. I was able to recover mentally only over months after RAI, as my thyroid was dying off. Some people feel normal selves being on ATDs, but for others it’s not enough. It can be frustrating sometimes to be talking even within the Graves community, especially with the ardent ATD followers, who have no idea how destructive a mental condition can be.

In short, I sense that your husband has an extreme mental case of Graves, and all I can offer is my own story, that only getting rid of my thyroid helped my mental and emotional state, – but of course the decision is yours.

I will send you a private message with a website that talks to family members of Graves disease patients, explaining what it is like.

[elf]

in reply to: Orbital decompression for ‘cosmetic’ reasons #1067485

My orbital surgeon has the same type of workload – she performs a lot of eye-cancer-related orbital surgeries, then eye restorations and Graves OD. So the frequency of ODs is about the same, a few a month. I think it’s reasonable.

[elf]

in reply to: Orbital decompression for ‘cosmetic’ reasons #1067480

hyperm,

sutan351 gave good answers. I just will try to answer quickly your questions:

1. Steroids is dangerous stuff and should be used for very short terms (days) for precise reasons. These are long-term side effects of steroids, that are worse than TED: http://en.wikipedia.org/wiki/Prednisone#Side-effects

2. In some people, getting blood in ranges helps their eyes… The excess of the thyroid hormone may affect their eyes, but not to the degree of TED. It’s hard to explain, since all Graver’s have some degree of eye involvement. TED just doesn’t proceed to its full force in some people, I guess.

3. Don’t know. If it’s TED’s signs, no conventional creams/beauty treatment will help.

4. No surgeries until TED runs its course! TED has to go over the "hot" stage that lasts from 18 months to 5 years, and then "cools off". I would say the biggest problem of TED people is this hot stage, – not the surgeries. Day after day, you have to get through the day, through the discomfort in the eyes, through the dry/teary nights, all the while having to perform all the healthy normal adult’s duties. Believe me, after years of waiting, a surgery will seem like heaven!

Once TED is in the cold stage, that’s it. It’s over. Now you can correct your eyes – eyelids, or proptosis, whatever state TED will leave your eyes in. TED will not be back anymore!!!

5. Except for making your environment "cleaner" (less household chemicals), your food "cleaner" (less fillers and chemicals), and forcing yourself to de-stress (shedding all the unnecessary responsibilities, taking long baths, massages), – waiting is the name of the game.

6. If you feel that you can’t see colors or light, go to a dr immediately. But in the majority of cases, no, people still can see with their bulging eyes.

[elf]

in reply to: Orbital decompression for ‘cosmetic’ reasons #1067479

Ski is absolutely right. No surgery is "cosmetic" with TED. The reason of proptosis is enlargement of the eye muscles, and that’s a medical condition, — regardless if your sight is affected or not. Giving more room for the eye by the way of OD is correcting the medical condition.

[elf]

in reply to: Still experiencing symptoms…but labs are normal? #1067801

stargazer wrote:Then, about 6 months ago, I decided that I should go on a healthier eating regimen just because I wanted to do the best I could for my body. I could go on and on listing tons of healthy foods that I have incorporated into my diet. Long story short, for the last three months I have been losing hair to the point that I am just like I was when I was first fighting Graves, my skin is dry and my nails have all broken off, my eyelashes are almost gone, I have heart palpitations, rapid heart beat, night sweats and day sweats, I am anxious, I am depressed and most of all, my TED problems are back and everything is blurry and my eyes hurt and are bulging a bit and I see double. … I am convinced that I am eating these foods in excess and that I need to cut way back on them.

I could not ever buy into any "healthy" or other foods or fads or stories… Something keeps me from getting into any one extreme… And now I realize just what keeps me from it…. I just feel that "tons" of anything is not good…. If anything, I feel that food intake should be decreased… Especially as a person ages… I feel that calorie-restriction lifestyle is best for any body. "Starve yourself, starve the cancer" they say… could be good with any other disease.

[elf]

in reply to: Orbital Decompression Surgery #1074440

Hi Sharon,

"Mild terror" beforehand is right! But just one eye OD helped me tremendously with self-consciousness. (Still waiting for the other’s eye OD ::rolls eyes:. 4 months after, I’m doing my "finger test" daily (touching my closed eyes with fingers) – one sits way in, the other is still at the brow bone level, or a bit ahead. I know, silly behavior, but it makes me all warm and fuzzy inside, – that it IS possible to reverse the "monstrous" look.

I can’t put the makeup on as yet, as the extra lid skin needs to be removed. Yes, I can wear swimming goggles. Don’t wear contact lenses, but can’t see why I wouldn’t be able to.

It was a bit scary right before the surgery, when you changed into the paper gown and the Dr drew on your eye… Then pretty much you didn’t feel anything until after you woke up… I needed Tylenol 2 for 4-5 days… My bruising was gone by the 10th day. The eye finally settles down after 3 or 4 months… Anything before that is too soon to tell.

I don’t notice any difference with my sinuses. But then again I don’t sing… Is your OD going to be endoscopic, through the sinuses? Then it’s more of painless and bloodless.

People who did OD on both eyes around the same time as me, were scared more (I thought that if something would go wrong with my eye, at least I would have the other). But now, it seems like they got the better deal – both eyes done for 4 months already, and they are on their way to lid correction, and then just writing this whole Graves eyes off! I on the other hand have to go through the OD again! And the lid surgery is moved more in the future, accordingly. So if you have bilateral OD, count your blessings!

Overall, I just love it. Even with just one eye done (which was a bit bigger eye though), my level of confidence went 89% up! (from 99% self-consciousness to 10% only!). It is amazing.

[elf]

in reply to: Answers, anyone? #1067339

Hi bluesky,

When you say, "In retrospect, I did have symptoms (eye pain, tachycardia, heat intolerance), but didn’t connect them to a specific disorder." – the thinness should be added there, too. Undiagnosed Graves people are usually thin, though eating heartily, and thanking their fast metabolism. When hyper symptoms are taken care of, the metabolism also slows down a bit, – to a normal state, depending what a person’s normal is.

I am 20 lbs heavier than pre-RAI (than pre-Graves Dx), but there are many factors contributed: maybe this is my personal "normal" metabolism, maybe the middle-age spread, maybe having kids (that coincided with Graves), maybe because I stopped exercising sharply after realizing I had Graves. Maybe my unrestricted eating lol.

I do think it’s possible to maintain the desired weight, but maybe not the "sick" Graves weight.

[elf]

in reply to: Post RAI changes in muscle and other feelings #1067289

100 mcg here…. They told me approx. dose would be 1mcg per 1 lbs of weight… So they gave me 100mcg per my 130 lbs and I’m still on it.

I do get "funky" feelings now and again, still, but I think it’s something else… Like feminine-related days.

You must be still very early in the post-RAI period, and it may be that your thyroid is still in the "dying" process…

[elf]

in reply to: Total T3, T4 normal, no TSH… #1067415

I think this is another case confirming what I have been observing with myself and several others:

sometimes, when a person is hypo (whether through RAI, TT, or on ATDs (the burn-out stage on ATDs)), the thyroid supplement helps to keep their free Ts on the normal levels, the person is not particularly feeling unwell or "off", but the TSH is "hyper".

I am post-RAI which means I am hypo, and my Synthroid keeps my free Ts in the middle of the ranges. However, my TSH looks hyper (0.01). I am feeling fine, and my doctor agrees with me that we should keep dosing by free Ts, not TSH.

He says he is aware of hypo people whose TSH starts behaving in this way, and they disregard it. Maybe my Dr belongs to a new generation of doctors ” title=”Smile” /> ?

I am, too, wary against decreasing my Synthroid (which would be the same as increasing Methimazole).

I wonder if they cover this phenomenon at the conferences, because I see it more and more.

[elf]

in reply to: HELP please with latest results…. #1067422

TSH for post-RAI and post-TT people CAN be strange. It can be very low, hyper-looking, or very high. If you are lucky to have a doctor who understands it (doses by FT3 and FT4, not TSH), you are sailing then.

I have had a very low TSH for more than a year now (like 0.01). My free Ts are in the middle of their ranges, I feel fine and healthy. My Primary doctor checks only free Ts. He told me that they are aware that TSH can be off for post-RAI people. I am taking 100mcg of Synthroid. If, however, I had headaches, (I don’t), he would recommend me to see an endo. But if I wanted to check out my pituitary anyway, he could refer me to an endo anyways.

Ski here had a similar problem of hyper-looking TSH a year or two after RAI, and the reason was that not all the tissue was removed, so she had to take another dose of RAI. 20 years later, though, I think you are not facing the same problem.

[elf]

in reply to: Effects of RAI #1067715

Nick, nice to hear. I had my "dump" 3 months after RAI (10 mci, too). I started my TED symptoms before RAI, so my eyes just kept on going after RAI. Good wishes in your recovery!

[elf]

in reply to: how do you get over the anger? #1068102

That is nice to hear, hockey!! Already, in 5 weeks, you are feeling the difference. In some people, thyroid affects their mental health in this way (making them angry and impatient and prone to rages), while in others it comes out as anxiety and inability to do routine tasks (driving, shopping, budgeting).

4 years after RAI, I would say I still have the basic personality traits that led to Graves (could be uptight, ), – but the capability to sustain anger is gone.

[elf]

in reply to: Hearing loss in our daughters #1067618

I can’t say if hearing is connected to hypo in pregnancy, but I have Graves and loss of hearing. I do have a history of hearing loss on both sides of my family, – no thyroid issues though in the family history. Maybe the two are connected (especially since my hard-hearing grandma had typical Graves behavior/mentality).

I was trying to ask about the connection on different Graves boards, but apparently the majority of people don’t experience changes in hearing from thyroid problems. Tinnitus is the extent some people have.

[Author]

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