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in reply to: OD Surgery and Decreased Vision #1179442

3. Your concern is valid re the steroids. They are a temporary “fix” to protect the optic nerve UNTIL an OD. Check this out with the appropriate docs when you can find them!

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in reply to: Do I need a Psychiatrist too? #1179412

Naisly
Thank you for your thoughts. I disagree with your views that posters are guiding others in any direction. We are sharing our experiences with our choices. It has been said a hundred different times, and in many different ways, that treatment is our choice, with the exception of a few circumstances. And there are pros, both objective and subjective, to each choice.

A little further education for you to consider. Some of what you said is not correct. Here ya go. This will complement what you study in psychology and marketing, perhaps. And of the United States, as well.

A psychiatrist is an MD. A psychiatrist can prescribe medications. Because he is an MD.

There are, however, PhD psychologists. Historically, they have never had prescriptive authority. Usually, when a person is having therapy with a psychologist, the psychologist works with the psychiatrist, determining medication, the physician prescribes it. In very recent times, a couple states have granted PhD psychologists to prescribe medications, but with the provision of addition education, usually two years, in psychopharmacology.
It is not common here. It is the exception. There is quite a bit of controversy in the field, for a psychologist may not know, and most probably will know have the appropriate fund of knowledge, of the patient’s total health history. There are some significant interractions with drugs, as I am sure you realize.
And here are some choices of a Master’s in Psychology:

M.A. or M.S. in Experimental Psychology
M.A. or M.S. in Industrial-Organizational Psychology
M.A. or M.S. in Forensic Psychology
M.A. or M.S. in Clinical Psychology
M.A. or M.S. in Social Psychology
M.A. or M.S. in Child Development

Oh yes, and regarding Canada. The Canadian doctors I consulted with, are MD’s, not PhD., and THAT is why they can prescribe meds.
Shirley

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in reply to: OD Surgery and Decreased Vision #1179440

Hi, some brief thoughts for you from my EXTENSIVE experience with TED (thyroid eye disease>)
I do suggest you read this to your mom, or have her read it if she can see well enough. Also, you are welcome to PM me, I’ll provide my phone number so we can talk, as well.

My thoughts. And my experiences.

1. I am not clear how her GD is being treated properly right now. Did you mean that she is on thyroid HORMONES now, or do you mean she is on ATD, anti thyroid drugs? Generally, if we have Graves’ we have too much thyroid hormone circulating, and the initial treatment is not to give MORE hormone. But perhaps she has already had RAI or surgery? I agree with Karen’s comments. However, one comment regarding the relationship between Graves’ and TED. These autoimmune disease ARE related, in that most TED occurs with Graves’ folks. But the antibodies and whole process are entirely different. And so are the doctors. From your post, it appears that your mom is having her Graves’ managed by her endo, and her TEd managed by a good ophthalmologist, who has referred your to a good eye surgeon. All of that is good.

2. No, your mother should not expect excellent vision right after her OD. There is a lot of swelling, and if she is not being vigilant about keeping her head of bed at at least 45 degrees, and continues to use cold compresses, there will be even more swelling. You can read my posts on my OD experiences. The muscles have been moved, and it really does take about 2+ months post op to have your final result. This is frustrating, cause I was waiting to get a new prescription, for I do need glasses. And I need prisms ground in the lens to help my vision.
Mine was kind of fuzzy and blurry for around 3 weeks, but always getting better as the swelling dissipated and the muscles healed.

3. The result from the steroids is typically kind of miraculous, for there is so much improvement! But this wears off as the steroid is tapered. Optic neuropathy, as you know, is very serious. I also had emergency OD, for the same reasons, decreased vision, inability to see the red color, and all the rest of it.

The surgery will not “make her vision worse” because the alternative is to go blind with optic neuropathy. But when the muscles are pushed around, and fat and bone are removed, the eye and the brain need time to get used to their new normal. In my experience, I had terrible double vision, had the OD’s then followed by the strabismus surgery, which corrected and moved the insertion and origin of the affected eye muscles. That takes about 3 months to heal totally. But the result for me was instant and magical! I could see a single object again!!!!

Please write with more questions, or if I have not understood where your mom is in all of this. Hope my experience will help you.
Shirley

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in reply to: Post-surgery pain questions #1179395

Hi Boomer, here ya go. This is a great place to get this info and others’ experiences
1. Discomfort (not pain) was from the intubation (breathing tube) and the hyperextended position of my head/neck during surgery.
I did not have anything for pain in the hospital, did not want it. Just wanted extra pillows so I could get my head in a more comfortable position. Mostly, I wanted OUT OF THERE!

2. At home, I felt the same way. Had pain meds, codeine, i think, i did not want to take them. Was also breast feeding-that’s most likely not a major consideration for you, Boomer! So, again no meds. Hurt to swallow, chew food that needed a lot of chewing. Mostly muscle hurting, like when you go for a big long hike when you are out of shape.

3. On day 3, seemed i was more uncomfortable, fed up with everything. Took tylenol. As Alexis said, ibuprofen and aspirin should be avoided for around 2 weeks. They are anticoagulants.

I found popsicles and cold wash clothes in a plastic bag very comforting for my throat and neck. I did not put the popsicles on my neck! They went in my mouth!

I would not say that I am a stoic, really, but narcotics and opioids I just don’t like much, and I am one of those people who do not notice any difference at all in pain relief when I take them. Only terrible constipation. I had them for another procedure,and threw away a boat load of narcs-Put them in a plastic bag in the rubbish, rather than flushing them in the water supply.

In summary, uncomfortable big time cause of sore muscles in weird positions, and some discomfort swallowing for a few days, same reason. But very tolerable, and no worries about nausea. Everyone different. But you have some compelling reason to think about all of this.

4. nope. too young and too busy to meditate or visualize. maybe others have had good experiences with this.
Shirley

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in reply to: Hi #1179382

Barbra, when I was hyper, I was eating at least 6000 calories a day, just stating a big number, I have no idea. My appetite was constant when i was hyper. I just ate. And lost weight. Later, when the meds kick in this will change.

Your question about your BP is valid. I suggest if you continue to have BP’s with the diastolic (bottom number) that low, you call and report a few of them, especially if you feel weak and dizzy. It certainly is possible that you have too much beta blocker. Also depends a lot on your normal BP and pulse.
IF you can remember what normal is! You have gotten good advice so far on this forum. One of the best things is, that people understand, and really do give a sh.. about YOU! We really care about each other.

I had the same issue with bowel looseness and URGENCY with one big accident in my car (leather seats) Being hyper is a terrible feeling. I was awake all night!
I was also heat intolerant.

Yes, probably best to go back to your doc you have now. This doc should be teaching you about what to call him about. For instance, you are taking an ATD (anti thyroid drug) but it is possible that it will work “too well” and you can become hyPO. He (and you) will definitely need to know these signs, sluggishness, constipation, can’t get OUT of bed, want to sleep all the time, and you feel like a total zombie. That is a different kind of hell. Ask him or check yourself, if he ordering some liver labs. Try to find out if he knows much about Graves’.. Hard for you to do that, when it is all so new to you, I understand that.

REad some of the references on THIS site, they are good and accurate. Keep writing with questions, and how you are feeling. It is possible that you may need to call him again if your BP and pulse get super low. Bodies do not like heart rates in the 40s, and systolic BP’s in the 30-50 range, but that is a big subject, with some exceptions. Do you know what your BP was before you were hyper and when you were hyper? And your pulse? This is a good disease to learn as much as you can, and you will from US! And a good doc.
Shirley
And welcome, welcome, and welcome again. Have a bite to eat! I really could NOT sleep!
Shirley

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in reply to: Become Obsessively Familiar With Your Meds #1179325

Important and relevant suggestion on this topic!
DON’T WAIT UNTIL YOU GET HOME. TRAIN YOURSELF TO OPEN THE BOTTLE, LOOK AND ASK BEFORE YOU STEP AWAY FROM THE PHARMACY.

Generally, they are not able to give credit for the drug once you have left the counter.

Also, it is discouraging, but the pharmacies are always negotiating for lower prices, and this means different companies, generics, and they all look different. In my experience, pill recognition is a thing of the past…….
Shirley

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in reply to: Panting, breathlessness, muscle weakness. Newbie and scared #1179252

Cool photo, boomer!!
You sure are an asset (as everyone is) and a breath of fresh air, to the forum.
Shirley

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in reply to: a song for you guys #1179301

MARVELOUS, RASPBERRY!
Loved it.
Shirley

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in reply to: Methimazole stopped working #1175309

To ricatca-I am glad wendy wrote, for it is supportive to be able to “talk” with a parent of another Grave’s child.

I think I recall that Kimberly mentioned there was a GDATF site, Facebook maybe, for parents of children with Graves’
I do not know what options you have, and I am sure that there would be a long wait to see this kind of a doc, but I do suggest a pediatric endocrinologist for both of you.

To Wendy-I encourage you to ask the doctor who is treating your little girl the pros and cons of RAI on a young child. I think treating a child with Graves’ is very challenging. But my understanding from talking to a physician who has a daughter with Graves’ at the last GDATF conference in San Diego, and from what I have read, is that surgery is a much preferred option for children. Done by a pediatric surgeon or course, preferably at a large children’s hospitals. It is at least worth a thoughtful discussion with the experts in the field, so you clearly understand the doctor’s rationale and reasoning for recommending RAI for your daughter. And you should learn the cons of this decision.

To ricatca-I am so so sorry about you son. It is painful, and very difficult for everyone, to deal with the behavioral issues with a child. Six years old is SO LITTLE! Of course Wendy’s girl is only three. All of it is hard, hard for all.

On the good side, it does sound like the endo for you son is paying a lot of attention to his situation, and have his doctor concerned and involved in his care, is encouraging.
I think it is probably safe to say that Graves’ in children is rare enough, that there are not many experts or resources in the field.
Questions for you-any other options for med?
-when does he want labs again?
-Tell him you realize that childhood Graves’ is rare, and you are worried (as he is) about all of this. Of course I am not a doctor, but a month seems a long time.
-ask him if there are any resources internationally that he could consult with regarding your son.

To both of you. My heart aches for you. I have two special needs grandsons, one on the autism spectrum, the other with a whole bunch stuff. We are not sure if either of them will be independent and functional and happy adults.
Shirley

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in reply to: new labs after CT with contrast #1179242

I’m thinking the mass is simply increased vascularity. Get the dumb thing done, find an internet cafe or take your iPhone or droid to Italy. ENJOY this wonderful place.
And-being the master of four cancers, thyroid cancer is one of the most benign, least worrisome cancers that is known. But you most likely don’t have it. Rare.
Have a great trip. And i do understand your concern and disappointment about this latest wrinkle. I am sorry that it did not get done last week
Shirley

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in reply to: Diagnosed @ 49 y/o #1179139

BOOMER! YOu are a wonderful piece of work! So glad you found this site/
stay here forever, even when you are better! Keep in touch with your new best friends. I’m probably the oldest of the bunch, but everyone needs a wise sage in their world! And I will be yours!
Shirley
I understand the poop issues. I GET it! It all gets better. Yes, it really does
Be nice if you never develop TED, though!!!
Shirley in Seattle but from Iowa

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in reply to: Another “what do you do?” question #1179227

Well, perhaps a poll IS a good idea! (:
I have never fasted for Albumin and Alk phosphatase and bilirubin, frequently included in a larger panel of labs.
I looked it up, and some references say fast for 8-10 hours.
I have worked in hospitals and clinics for many years, never heard of this before. So it if is “right” a lot of providers are “wrong>>?” Dunno

Not so cool to check fasting on the slip, if patient (you) were not fasting. That is misleading. ANd she is altering an order written by a doc. NOt ok.

I never pay any attention to labs and when I took my ATD Never been told to.
At least, all I do is consistent over time! (:
shirley

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in reply to: Wish me luck-surgery Friday! #1179083

glad you are mostly on the other side of this, Karen! You will lose this weight rapidly, may even pee it out in next few hours.
Get a good sleep

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in reply to: Meds: once a day? #1179208

yes to all!
Shirley

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in reply to: Diagnosed @ 49 y/o #1179127

Hey boomer! Welcome to the forum and all your new best friends!
WEll, look at it THIS way! At least you did not go to multiple doctors who missed the diagnosis! With YOUR symptoms, the ER nailed it right away!
I am super glad you went, though. Hearts are not fond of beating 160 bpm (beats per minute.) And ya, you were severe! So glad you are having treatment now.
Yeah, the beta blockers are wonderful.
Yeah, I had multiple soft BM’s when hyper. I imagine things will sort themselves out. Just so ya know, if you get hyPO, then you get constipated.

There are several former smokers on the forum. And one, who is trying to quit right now. I don’t recall who, but if you put smoking in the search engine it would probably pop up.

Couple things. You will see methimazole, referred to as MMI. ATD is anti thyroid drug BB is beta blocker.

I do understand, with all the crap you had going on in your life, that you just soldiered on, even though feeling terrible, and losing weight. It is understandable.

You have done the best favor you can possibly do for yourself by stopping smoking. Hip Hip hooray!!! I am SO PROUD OF YOU, and so happy FOR you!
Hell yeah!!

So so glad you went to the ER! the fifties are nifty! That is exactly what I told my neighbor who will be 50 this year. By then you will be all “sorted.”
I hope your parents are settled. It is that time of our lives. I am an only child, and made many trips back to Iowa to help my parents.
And-I’m right with ya with the relationship thing too!
Remember this!
WHEN DOORS SHUT, DOORS OPEN. That is the way I looked at that part of my life. We split when I was 44.
All for now.
Welcome again
Shirley

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