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in reply to: can’t decide- IV steroids or oral #1184431

Liz, so nice to hear from you, and wonderful to hear your thoughts and comments!!! Thank you. I will ready your article as soon as I become conscious after coffee! It is our rain in SEattle and I feel like a slug.

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in reply to: Full thyroid removal after five years with TED? #1184442

Hello, I am just addressing your seat question. I had a thyroidectomy, and other than recovering from having anesthesia and a surgical procedure, it did not impact me negatively in any way at all. I was very relieved to have the surgery. “Back in the day,” when I had my surgery, the thinking was to leave a tiny bit of thyroid tissue (rather than total thyroidectomy) with the thought of not needing to take thyroid replacement. This did work for me for multiple decades, but now I take a little synthroid. I had TED 6 decades after I have Graves’!!!!:mad: TED was very difficult. I don’t recall my TSI numbers anymore. I will as for them at the next lab draw.
For me, it is now difficult to separate being much older, and the reason for being tired. For the most part, I do what I want to do, travel, and walk at least a mile every day. My eyes, however, rule my life. They sting, they burn, they will not close (due to some very unsuccessful surgery ) and I am very sensitive to light But I can drive, I can read and wear sunglasses. My labs alway say I am a bit hyperhthyoid, regardless of the dose! I am on 112 mpg one day a week, and 100 mpg 6 days a week. I’d love to have more,but I developed atrial fibrillation, an the risk of stroke increases for me if I am hyper. Thing is, the only hyper part of me, are my labs. Not how I feel. Not sure this is helpful, but I have found this forum helpful beyond measure, just know there are other folks out there who understand!

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in reply to: Third relapse #1183505

Liz, the Standard of Care used to be to leave a tiny piece of thyroid, to avoid having take a thyroid replacement, the theory being that a small mouth of remains thyroid would produce just the right amount of thyroid hormone. This is what I had…a sub-total thyroidectomy. As a result, I was euthyroid, in the “just right ” place for over 30 years !
Shirley

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in reply to: can’t decide- IV steroids or oral #1184427

For TED, (thyroid eye disease,) the main reason to give steroids is usually because the orbital swelling of the muscles is so bad, the major concern is that the optic nerve might be compressed, and occluded, because of the pressure.
If this happens, it results i permanent blindness. This “buys time” to save the the optic nerve.) It “buys the time to keep you safe, before you have a OD (orbital decompression.) So when steroids are recommended by a neuro-ophhthalmologist, I would (and did) take them. I had infusions in the hospital for an hour, for 3 days in a row. The standards of care could have changed since then, for it was in 2008. ( I recommend going to this kind of doc if you can find one in your area.)

Steroids are marvelous when needed and indicated, and yes, along with many other drugs, have side effects. They also save lives.

I know it is confusing to have differing opinions from docs. And Graves’ and especially TED, are not understood well by all docs. There is no uniform agreement. In my personal experience, I had IV steroids, then an orbital decompression. My near-op doc did not prescribe radiotherapy, and did not recommend it. He said he would not do it.

As you see from my history posted on the site, my TED appeared almost 5 decades after Graves’ and a thyroidectomy! My TED is severe, and bright light , dry eyes and inability to have my eyes close completely at night are still issues for me today.
Shirley

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in reply to: On ATD two years-plus? #1183783

SO NICE to hear from the old timers on this forum! Love it. I would love more hormone, to have more energy, but I also have afib. Labs say I am a tiny big hyper. Well, that is the labs, not me! TED continues to rule my life 24/7. Many eye drops, and have to tape my eyes closed when I sleep. But I can see, read and drive. Super photophobic. Must have sunglasses available at all times.
Shirley

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in reply to: Vitamin and mineral supplements? #1184370

Kimberly covered it all well.

The selenium study was done in a selenium deficient population, so I don’t think it has much value.

Re calcium, my understanding is that it is metabolized by us in food, and the pills don’t do much except contribute to constipation.

As she said, there is a simple test for Vitamin D level There definitely are very troublesome and serious side effects from taking too much Vit D orally. Better to have sun and food.

Having a sensible doctor is very helpful, too…..(:

Shirley

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in reply to: My husbands behavior is irrational after TT #1184402

Well, it is hard for you to believe right now, but when I was in your position with three teenagers, looking back, it was the best thing that could have happened in my life. When doors close, other doors open. I am so very sorry that you are dealing with this stress. It’s big. Lots of unknowns. Lean on good and trusted friends, just a few.
Shirley

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in reply to: My husbands behavior is irrational after TT #1184398

Agree with Liz on everything she said. This is ridiculous. I am sorry, but you need a new doc..ie your husband does. To get a call on Wednesday, about a lab drawn so long ago, is wrong. If HE (not you) calls, just talk to the voice which answers (0r better yet, go to the docs office) have him sign the Release of Information form, stating that he wants all labs, summaries of all visit, sent to him. You can’t do this, he must do it cause it is his medical record. If you want to practice it, o the same with yourself. I cannot IMAGINE not having records of my visits. In these days, I usually get it at the end of the visit. But some is online, depending on where you are.

It is crazy for you not to know these labs. And three weeks, with no knowledge, is nuts. You don’t know if they are normal, within range, or not in range. Grrrr.
Shirley
Sure am glad you wrote to this forum. You have new friends here. Maybe later, your husband will read the guy stuff. But take it a step at a time right now, I guess

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in reply to: My husbands behavior is irrational after TT #1184394

I am so sorry that you have had this wait. Will the doc be able to reach you-your husband anytime tomorrow, so you don’t have to play telephone tag? Does he email, or communicate with you electronically/ If so, ask him to release the results or send them. Is this a new doc for your husband? etc. etc.
First things first. Do write again when you know more, and I sure hope it is tomorrow.
Shirley

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in reply to: My husbands behavior is irrational after TT #1184392

Ask for the labs. They were available 2-4 hours after they were drawn. Either you will be told they are:
1. “fine” In that case, someone should continue to explore this situation.
…and you should ask what that means.
2. “he needs to take more thyroid hormone?” Which I am guessing is the case.
3. Ask if he is hyPER or hyPO. His symptoms are more like hyPER.
And you should ask to have the RX called in so he can begin today..or tomorrow. AND ask how long it takes to see and feel a difference. Unfortunlately, it takes 4-6 weeks, but sometimes it is earlier. Depends on person and dose.
Most likely if he needs more hormone, he will feel better in a week, but how he feels needs to be combined with the labs.

Is he seeing an endocrinologist who understands Graves? Or a doctor who does? Many don’t. And many endos focus on diabetics, since it is an epidemic this country.

Most of what I have said you can read in any article. I am just reflecting on how I manage myself. WE (patient and family) are the ones most motivated to pursue and understand our care. And Graves’ is not a cookbook situation, which makes everything harder.
Shirley

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in reply to: Synthroid resistant hyperthyroidism? #1184381

Marilee,

I am not sure, this might be a terminology issue, but when you wrote,
” I am actually becoming MORE hyperthyroid with my TSH even lower each time. My MD is baffled, said this shouldn’t be happening.” This puzzled me, for when the TSH number is lower, that means that you are more hyperthyroid.
If it goes above the range, it means you might be hypothyroid.

I sure do agree with Kimberly that you should see a (preferably a near-opthalmologist) or certain a regular ophthalmologist, to check out your eyes. Bulging eyes is a sign of TED. As a reminder, I had Graves in my early 20’s and “got” severe TED in my 70’s!1 So TED can occur decades and decades later.

I’m one of those people who had a sub total thyroidectomy, the theory then was to leave a little bit of thyroid tissue, with goal of being euthyroid. IT worked for me for about 40 years, then I needed to begin to take Synthroid.

I can never decide which was worse..Graves’ or TED. For me, it was TED, for I still have many issues with my eyes.
Shirley

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in reply to: Men With Graves’ and TED #1184003

Great forum. I’m not a guy, but I sure do agree with Andy about his suggestion about closing one eye. I did that sooner than he did, and that is the ONLY reason I ended up with pretty good vision in that eye. I had an emergency decompression. It can happen very fast. Do see a neuro-opthalmologist to follow you closely if there is one in your area.
Shirley

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in reply to: My husbands behavior is irrational after TT #1184389

Well, tomorrow is Friday, thank goodness! If he goes early in the day, maybe he–and the doc, or course, can get the levels and I hope, make some adjustments in his meds. I do think it is his meds, and the Graves

Genuine Ruby (hi, Ruby!) has thoughts that are excellent and accurate. It does take time to get doses regulated. I really do think it is the damn disease, and that he will revert to the nice person he used to be. Most of us who have had Graves’ has experience the anger, the rages, the rejection of people we love the most. When I look back, I cannot believe that was really ME! I don’t know if reading this post would be helpful for him, but maybe it would. Probably he does realize he is not “himself.” He sounds like he was (and will be again) a very nice person, and you will resume your good relationship. This is really tough, and I am so sorry you have to deal with it.

Friday is a tough day to have labs, cause the dreaded weekend is coming, so if you or he can push and push to get the labs, and ask what the treatment plan is, go for it!
Shirley

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in reply to: Anyone using Restasis for dry eye? #1184319

Forgot to mention Restasis Did not help me at all. Stopped a long time ago.I believe this eye drop has a limited use of time, and can damage eyes if used for long periods.

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in reply to: Anyone using Restasis for dry eye? #1184318

I alternate beween Thera tears, Soothe and Systane balance eye drops…and now and then the hame of one I can’t recall tonight! Very expensive, very good. I also have a little amount of steroid eye gets which I use very rarely…maybe in a very acute painful situation when I don’t tape my eye closed at night. Bad to overuse steroid eye gets.
Shirley

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