[snelsen]

in reply to: Need info about IV steroid therapy #1175884

Nope. I don’t think so. I can understand why you asked, cause of Graves’/TED, that is on your mind.
TB caused by bacteria in droplets, kinda hard to get, really, but possible from being exposed to someone with active TB.

I have had zillions of TB skin tests. Not sure if this is your first one, or not.
The reading is rather subjective, and the first thing to do is repeat the test, and/or proceed to a chest xray as you doc ordered.

In recent years, people who are positive for HIV have had a TB that is much more resistant to treatment.

You probably won’t get an answer, cause most likely the logic is not there for anyone to think about it!

Good luck with your steroid infusions. YOur eyes will be better, but you most likely will know that you are getting steroids. I think I mentioned before.
Hungry, little bit of a round face, more trouble sleeping and more fussy.
But your eyes will be protected, that is good. When steroids are stopped, all symptoms go away, and usually the improvement in your eyes does not remain.
Whee.
Shirley

[snelsen]

in reply to: Running out of Steam Post TT #1180663

Sue.
Yes.
100% normal
Thyroid regulation plus not realizing or believing that a general anesthesia can impact us. Even at 4 weeks.
I went back to work full time and could NOT do it.
Pull out the “tincture of time” card. (: I understand being so so tired, yet unable to sleep.
Shirley in the Denver airport..

[snelsen]

in reply to: Hypo and worsening TED symptoms #1180610

I have a couple thoughts based on my own experience with TED. and some general thinking and wondering…

I have been hyped based on labs, for years. Despite any attempts to lower Synthroid dose, the labs still say I am hyper. All three of them. Of interest, the hypothesis is that I was prescribed too high a dose of Synthroid over many years. No hyper symptoms. Ever. My TED appeared 50 years after my initial Graves’.

I really do not know if there are some good, evidence based studies, relating TED to hypo. I do realize that people with TED symptoms and/or any mild eye symptoms, (dryness, itching, redness, little bulging perhaps-that for THESE people, RAI has seemed to exacerbate TED symptoms.
My thought is that it certainly is possible that many people with Graves’ have some degree of eye involvement and mild TED, with the “other”antibodies doing their thing. And many may not even realize it or associate it with Graves’. Unless they read this excellent forum, or think to mention eye symptoms to the endo.

Certainly some good studies would be nice to read. First, enough data has to be collected, and doctors have to be interested enough and have a motivation to report it, and a study funded. I think most of the observations are just beginning to be mentioned at meetings (TED sx. getting worse after RAI as compared to TT or ATD.) For the time being, it seems to me that when a person who is aware of eye symptoms before RAI, that docs are beginning to prescribe prednisone before the RAI, and if they worsen after RAI in people who had a few symptoms to begin with, or who develop eye TED symptoms after RAI, prednisone might also be prescribed. And there is some tendency, I think, to choose another treatment other than RAI if a person already has TED.

Having said all this, for Graves’, the major goal is to be euthryoid, and avoid hyPER or hyPO.

For TED, the stages and the treatment are the same. Watch and wait in the active phase, using eye drops, lubricant, sunglasses, maybe prisms if they help for double vision. Wait a LONG time, usually between 12-18 months, until there are no more changes and worsening of symptoms, then have the corrective surgical procedures we might need for more severe TED, beginning with OD, then strabismus then upper eyelid, then lower eyelid surgeries.
The only exception to this pathway being if optic neuropathy happens in the active phase, then we need and OD.
Shirley

[snelsen]

in reply to: Prednisone again? #1180599

yes. agree. is for optic neuropathy. they give it to protect your optic nerve.
Buying time for whatever reason.
Are you in active, or hot phase, or cold and inactive.
More later, gotta go to bed..
s

[snelsen]

in reply to: Need info about IV steroid therapy #1175882

Ok. I got it! And… I also had IV steroids. I had the oral ones to give me a little momentary relief from my terrible, awful, life changing double vision.
It helped when I was on them, and returned worse than ever when they were discontinued.

I had IV steroids, but only once a week for three weeks. I think 1 Gm each week, but been a while, not sure of that.

My vision is not good. 13 surgeries better. but I can see to read, drive sensibly I am very photophobic, wear sun glasses all time and have to have a visor with me cause of glare. Eyes dry, get super tired. But can see
!
s

[snelsen]

in reply to: Need info about IV steroid therapy #1175880

Hi. Are you referring to oral prednisone? Or IV? your post stated ” It was 500 ml of mg for 6 weeks and then 250 for 6 weeks.”
I am wondering if you were typing too fast. 500 ml is a lot of FLUID, a glass of water is 240 cc (ml) I am wondering if you mean 500 mom of prednsone once a day for six weeks. If you do, I agree, that is a WHOOPING BIG DOSE.

So first, let’s clarify what you are taking.

I had what is considered a high dose of steroids (prednisone) 60 mom for 2 weeks, with a VERY long taper, over the next two months, down to 2.5 mom before discontinuing.

Prednisone made me very hungry, and very fussy and irritable. It goes away when you stop the drug.

Do write with more info.

[snelsen]

in reply to: Prednisone again? #1180596

Hi, Yes, that really IS a very small dose. I am wondering if it has been prescribed because there is concern about pressure on your optic nerve. An orbital CT would document that, plus not seeing the color red as clearly, and some other tests that indicate decreasing vision.

Without checking back on your other posts, I don’t recall where you are in this whole TED process.

Re Cushing’s, I’d say that is a non-worry. It can be an outcome of very long term use is corticosteroid, decades and decades. But not with the short periods of time you have had it.

Re steroids. I understand, and I hate them.

Re knowing more. I bet you anything the reason was stated in the chart. Or try to track down the resident who saw you first. While we are on the subject, I always sign the release of information forms required, so I have a legal right to access my OWN MEDICAL RECORD. I regard this as essential. And, believe me, I do find mistakes and assumptions. I have tried, but not succeeded, to get corrections made.
Examples-left mastectomy when it was right. Chart for Nelson rather than Nelsen. Listed meds that I had not taken for years, despite completing the med update at every single visit. Had procedures done at office visit which were not stated in the chart. Had stated procedures which were NOT done. Musta been some other patient! Just to name a few………….
Shirley

[snelsen]

in reply to: Breastfeeding/ Weaning & Synthroid Dose- Shirley #1180587

Hi Alexis, nice to hear from you!

I remember clearly! No change in Synthroid, and no weight gain. Quite the opposite for me with weight. When I (reluctantly, sadly…!) stopped nursing, I lost a few pounds. Stopping nursing is a bit hard to define, for it was a gradual thing, moving toward a nip some mornings, most nights, and when someone fell off their tricycle, out of a swing, or felt like a sibling was torturing them! I am going to the Midwest next week, and get to see a newborn. So excited!

Shirley

[snelsen]

in reply to: Shingles now, what’s next… #1180542

Agree with Sue. Plus, shingles is SERIOUS STUFF. The anti viral is wonderful, and we are lucky to have it. The pain and further involvement can be terrible. I did get the shingles vaccine, too.
You can verify this by asking to speak with the pharmacist when you pick up your RX. Just ask if there are any contraindications to taking thyroid hormone and the antiviral. I think it helps us a lot to remember that thyroid hormone is a part of our life, and is necessary for life. It is just that we are taking it (cause we have to) orally, though the GI tract now, so there are a few things we need to be aware of, mainly to avoid oral supplements for four hours after taking the drug.

so so sorry you have shingles. Not a pleasant experience, that is for sure. You will get better pretty darn fast with the antiviral.
Shirley

[snelsen]

in reply to: Hello again, and another post-TT update #1180493

Oh, Amy. I am so glad to hear from you. I think of you every day.

I do know how you feel, all of it. I had a different trajectory, for I was super fine after my TT, and I guess I got my comeuppance about month 5. From one week post op to 5 months, I was back to normal, worked, nursed a baby, had fun, energy for everything (but not hyper energy, just normal 24 year old energy.) Then BOOM. I could have written your entire post. But I was not working full time, only 50%.

I don’t know a lot about ferretin levels, and the extent of low that is contributing to your general feeling crappy, but I think when you get the infusion, it will make a big difference. does this level coordinate with your HCT and HBG, are they low too?

Sure glad you had the Synthroid increased, sounds like the right move at the right time.

I thought your incision looked wonderful a lot time ago. I imagine in another few months, you will have to show people where it is.

I hope you get a good sleep tonight. I have a very difficult time sleeping, and I worry about it.

Sure hope all is looking better for you in the next few weeks, that the combo of iron and more levo will begin to change your world for the better in a short period of time. YOu have more than paid your dues!
Shirley

[snelsen]

in reply to: Strabismus surgery experiences #1180489

I tried all kinds of prisms. They do help some people. I am glad they helped you. My TED appeared almost 50 years after Graves’. Not encouraging news.
I had no idea what it was. Just figured I needed a good eye exam and new glasses.

At this time, I have “6 up” prisms ground in the lens’s of my very expensive glasses. I am sorry to say that I am having “new onset double vision” mostly in the morning.

I have found TED to be the single most devastating health issue I have ever had. And I have had many. Two breast cancers, one super severe, heart damage from the chemo, lots of osteoarthritis in knees..but TED tops it all.
I am so glad that some people have a mild case.

Shirley

[snelsen]

in reply to: Strabismus surgery experiences #1180487

Hi, I have had numerous surgical procedures for my severe TED.

Strabismus was my favorite! I had severe double vision. I can’t address the adjustable sutures, b/c I did not have them. But in the OR, they woke me up several times, had me look at letters, eye chart, etc., to see if I had mono vision or double vision.

The recovery was a piece of cake. I went for a gentle walk the same afternoon.
YOu do have to heal, so straining, working out, swimming, are contra indicated.

I think the adjustable sutures are visible. Surgeons have different techniques. Best thing to do is make an appointment with the surgeons who will do the work.

Double vision is super hard to have. This surgery really made a positive difference to me, in a world where TED has made a horrible negative impact on my world.
Shirley

[snelsen]

in reply to: First day of Levo…… what should I expect? #1180428

You’ve had great care. I agree with you that 125 mcg seems high to begin with. But maybe there is reasoning behind it.
In my experience, I had no, zip, nada symptoms at all. See how you”do,” but there can be no real evaluation for at least 2 months, by labs.

It is hard to distinguish the post op recovery (which does have symptoms, mainly being surprised over and over again, at how much energy and endurance you DON’T have) for about six weeks. With that dose, I doubt if you would pitch into hyPO land.

I guess, just wait and watch.
Shirley

[snelsen]

in reply to: One of “those” days. #1180418

To Barbra-SO glad all is better for you. Good to hear. I am going to the Midwest in August for a few days to revel in the heat and humidity, and the wonderful Iowa tomatoes and corn. It’s my heritage and it is home. We don’t have lightning bugs, cicadas, mosquitoes, or frogs. I miss those night sounds!
However, I love Seattle. A lot.

To Deb-SOLD! You can be either a granddaughter or a daughter. Might be a bit of a stretch to be a granddaughter, though. My oldest is 54, which means he was a dad when he was six years old. But I’m open to either option!
Thank you for your thoughts and support. TED has been very, very rough, and continues to be a negative factor in my life every day.
I am exploring the eye doc world for a more compassionate one who is familiar with what I need.

I would LOVE to visit your part of the world. I think, from Seattle, we go OVER the pole, but now sure about that. I do know that it is a long, long flight. But well worth it. My friends just returned from six weeks in both New Zealand and Australia, and they did NOT want to come home! Loved it!

Sue-did you clear your throat yet? Shower? TAKE IT EASY!

SHIRLEY

[snelsen]

in reply to: Sue’s TT – July 16, 2013 #1180349

Sue. I see what you mean by the plural steri-strips. Very reasonable question! They are referred to as plural, because of the several strips that are embedded in them.
They are tough. Usually stay one very well with showers. Although I would not let shower pound on that area for a long time, but you are not likely to be doing THAT!! So bag the 15 minutes of shower pounding down on your incision site, not a great idea.(: Steri strips are made to be able to shower with them. If your 3″ steri strip does begin to come off at the edges, I suggest reinforcing, maybe with a band aid, to keep it from coming off. They usually fall off, or begin to, at about day #7. Your incision will be very happy, and I suspect will heal, and you will have to look very carefully to see it. When I show mine, people usually say, “I don’t see it.”

Yep..that fatigue factor will remind you that you had an “event” Don’t forget about it. Your body is your temple!!!!
Shirley

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