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in reply to: Hyperthroid with no symptoms #1184736

Darn it! I just lost my 4 paragraph post to you. Not sure why.

Will try to summarize. And add another response if I think of more later.

1. Consider calling the endo’s office, asking to be notified of any cancellation.
Provide your labs when you call, and how long they have been in this range.

2. Considering your labs have been so stable for so long, February does not seem that far off.

3. Age matters, and you should consider this. The values change a bit with age.

4. To have a complete story, be sure to include the range for them They differ with each lab.

Shirley, my thoughts from another Grave’s TED person.

[snelsen]

in reply to: On Week 12 and very discouraged #1184498

I totally get where you are right now. That is what is so marvelous about this site. NOT ONE PERSON has a clue about this illness until it happens to us. And that includes all of us, when were were in the “before” crowd A few people who have had relative with Graves’ and TED are usually very sympathetic.

I think the double vision was the worst for me. Yay, strabismus surgery. But I had to wait a long time to get it, so eyes stopped changing every 3 hours! Also (see my history) had an emergency OD orbital decompression.

Doing ok now, but photophobia, itching , burning , tearing continue, and that is what I am stuck with now, plus eyes do not close well, especially my right eye.
But I can read, drive, see. There was a time when I could do none of these things.

[snelsen]

in reply to: Whether to have a thyroidectomy #1184714

Hi.
another experience.

I think the major thing about taking Synthroid is being consistent with whatever you do. Then the only other variable might be age at some point. I do not follow the “wait an hour” rule. I generally take it, then to kitchen to make coffee. when the coffee is done, I have a cup with a little half and half. It is usually closer to 15-20 minutes after taking Synthroid. I do the very same thing every day. I am not suggesting that you do what I do, but this works for me, and it is what I want to do. Labs are rock stable for several years, never have to change the dose.

Shirley

[snelsen]

in reply to: Long term side effects of Synthroid #1184700

Well, I am not sure how old you are, but certainly age and genetics are significant variables, and in my opinion, more significant than Synthroid, which is a hormone we must have to live.
Sometimes it is hard to get familial history a few generations back, but I know that many of my female relatives “rheumatism” and arthritis, which I realize is
not osteopenia or osteoporosis.

You can ask you doc, but I don’t think any supplements reverse osteoporosis.
And follow Kimberly’s suggestions, which are all super.

[snelsen]

in reply to: Rituximab #1184679

This is about orbital radiation. I refused it, because I realized that there could be another time in my life when that general area might need radiation. Like two breast cancers, and a small tumor in my mouth. But, of course I knew none of that then. I am not a big fan of radiation. I did have it for my most serious breast cancer and had very painful, weeping sores on my back from the amount that was given. To each his/her own. That was my experience.

[snelsen]

in reply to: new to this- need help supporting loved one with Graves #1184692

What wonderful people on this forum! And this thread.
Great thoughts Liz and emmtee.
As emmtee, mentioned, the meds might most likely will be necessary to prepare her for surgery-and the surgery might seem attractive to her, for it is definitive. I know that is exactly the way I felt, for sure.

This self-care thing is always hard. But critical for you to do this for yourself and your relationship…and your life! Do keep writing, we will help as much as we can!
Shirley

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in reply to: new to this- need help supporting loved one with Graves #1184688

I would prefer to have her read this. I have been hyperthyroid, and worked with, and cared for (in the hospital) folks who decided to stop their meds. It is not pretty.
Every reason for you to be scared, and she should be scared, too. The ramifications of being hyPERthyroid range from lifelong heart problems, deteriorating bones, i.e., much increased incidence of osteoporosis, loss of weight to the point of having it be a catastrophic situation for her. and…it happens, if she does not believe it, have her read about this…thyroid storm, which an individual has a vary good chance of dying, if the do not seek emergent help from docs who understand what is going on with her. Also rapid pulse rate, which is extremely harmful. Tremors. Oh yes, anxiety, sometimes psychotic episodes.
Liz had good advice. I hope she reads that post, too. You have every reason to be scared. It is like living with or being with a crazy person. Which most of us were, when we were hyper.
Stopping the meds is just plain harmful, really harmful for her.

[snelsen]

in reply to: Rituximab #1184674

I had Rituximab. Saw no difference. Had the same experience with steroids. They helped, both oral and IV, but they are a vision saving intervention. We can’t stay on them. Also had methyltrexate, with no change.

The complexity of myasthenia gravis sure is another confounding variable for you to deal with!
Shirley

[snelsen]

in reply to: Question from an old-timer #1184666

If you have not done it, ask for a calcium level with your next lab draw.
If it is WNL (within normal limits) then ask if taking “extra” calcium is a good idea.
AND….so nice to hear from you for any reason SueandHerZoo!!
Shirley

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in reply to: Thyroidectomy: did your surgeon require euthyroid? #1184656

My experience the same as Kimberly described.
Shirley

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in reply to: Newly Diagnosed and not doing well #1184641

I think you got some great replies in the above emails. And i agree with all if it!
Things DO get better, surgery is the answer I found. Never looked back, just take Synthroid, and check labs now and then.

[snelsen]

in reply to: Reducing Graves’ Disease Antibodies? #1184648

I can only think of a 2nd opinion. Seems like the doc should appeal it. He’s the boss, not Kaiser. If he writes a referral, I would hope Kaiser approves it. Or has that step already been taken?

[snelsen]

in reply to: TT and eye disease symptoms #1184595

another typo~!! Neuro ophthalmologist

[snelsen]

in reply to: TT and eye disease symptoms #1184594

sorry, typo up there. near-ophthalmologist

[snelsen]

in reply to: TT and eye disease symptoms #1184593

I can only state my experience. I view them as two separate things, but kinda related. The important thing regarding eyes, is to be sure you are being seen by a near-ophthalologist. With TED, the typical response to steroids, is for the TED to improve. But when steroids stopped, for TED to return. The big things to be concerned about are:
-decreasing vision-probably because there is pressure on the optic nerve. Without intervention, usually and orbital decompression, blindness can result.
-damage to cornea (cause of bulging eyes)

No, we can’t just continue to take steroids. That is a temporary measure to save vision, by relieving the pressure on the optic nerve.

If double vision and increasing decrease in vision occurs, most probably an orbital decompression will be needed, of course, that means you should be seeing docs who know this, and or be referred to a doc who does.

As is stated in my history, I got TED multiple decades, almost sixty years, after my sub total thyroidectomy. They left a teeny tiny piece of thyroid gland. Subsequently, it was not functioning at all, and I began Synthroid.

I take Synthroid now, and eyes work well after my many surgical procedures.
The double vision bothered me most of all…plus not being able to see, and realizing my vision was diminishing.

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