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in reply to: Anybody have this? #1177709

to Laura
I am finally home, wrote a long post, then for some reason it went away.
I think I’ll call it a day soon, it has been a long one. I am glad you have an appointment soon, so I have given you some thoughts for your questions during that appointment.

1. I have concerns about you being advised to take a hormone combo of estrogen/progestin. There are many evidence based studies,the most extensive one with a huge sample of the population is the Women”s Health Initiative, which concludes without a doubt at all, that there is much more risk in postmenopausal women taking both hormones. It has been a Standard of Care for several years, now to prescribe estrogen only. I suggestion you review this with the doc who prescribed them, suggest you get 2nd opinion on this.

2. Briefly, in TED, our tears are not as lubricating, and this is what your doc was talking about. Not a bit unusual for TED people to have dry eyes.
The meibomian glands (or tarsal glands) are a special kind of sebaceous gland at the rim of the eyelids inside the tarsal plate, responsible for the supply of meibum, an oily substance that prevents evaporation of the eye’s tear film. Meibum prevents tear spillage onto the cheek, trapping tears between the oiled edge and the eyeball, and makes the closed lids airtight.[1] There are approximately 50 glands on the upper eyelids and 25 glands on the lower eyelids. The glands are named after Heinrich Meibom (1638–1700), a German physician.

4. Elaine Moore writes well and is easy to read. At one time, she posted on this forum because she had Graves’, just like the rest of us.

Subsequently, she has published many books about many subjects.
Her backgroundShe is a medical technologist, so she worked in a lab, and lab tests are familiar to her.
However, I have concerns about anyone who is writing books inferring authority on so many different subjects, including kidney disease, Parkinson’s and more I cant think of right now. And thyroid disease, as you know. I think I’d prefer to get my information respectively, from nephrologists, neurologist, and endocrinologists and rheumatologist, neurologists, for these issues. There are many people with PhD’s and MD’s in immunology and endocrinology, and they would probably the first to tell you that there is a lot to be proven and known in any of these fields.
So, the statement in her book is to be questioned with healthy skepticism. I wonder what citations she is referencing, to document her new revelation.

The quote from her book:
” I read it Elaine Moore’s book that “estrogens are a known environmental trigger for autoimmune thyroid disease. Because estrogen can influence the course in autoimmune disease, worsening symptoms, the use of estrogen supplements can contribute to symptoms of GO.”

Time to go to bed.
This is a great website. I do not know what I would do without it.
Shirley

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in reply to: Anybody have this? #1177700

I am flying today. Will respond to you post when I get home and canusemy computer
Too much to say fromiphone
Shirley

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in reply to: 3 year old with graves #1177590

Measles is a live vaccine. NecessAry for immunity
Do follow up with the pediatrician. Measles is a scary disease and you are in the middle of an epidemic. You should Also be sure you are fully immunized so you do not get measles And expose your child or anyone else

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in reply to: 3 year old with graves #1177588

The only person to answer this is your pediatrician.

I grew up beforemeasles vaccine, and measles can be dangerous. The fact that there is a measles epidemic in your area, means that not enough parents have had their children get MMR, thus the epidemic.
On Monday, I’d call her doctor, (or the doctor who knows about her) say to the voice that answers
you MUST get the answer to the question. I think you will be advised to get the vaccine for her.
Another option is to simply take her to the doctors office, tell them you are here for her vaccination, but tell them you want to check with the doctor first.
YOur questions:
1. OK to have the vaccination because she has Graves?
2. Does the fact she has an enlarged heart make a difference one way or the other?

I suspect the answers will be YES to #1, and for #2, NO
and probably the Conclusion, especially with the measles epidemic, that it is critical that she should get it.

I am just a Graves’ person, and medical advice can’t be given on this forum, as it should never be given by anyone who is not a physician, who knows your daughter. But I encourage you to definitely make it a priority to
get the answer to this question on Monday, and I hope this is possible for you to do.

If you have not checked already, you might appreciate the information Kimberly has provided in the past, for parents with kids with Graves;.

If you would like read a reliable source about measles, here is the American site, called the CDC, or Center for Communicable Disease.
http://www.cdc.gov/measles/vaccination.html
shirley

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in reply to: Me again #1177296

Hi. Re morning med and coffee.

I decided years ago, that waiting for my coffee for 1/2 hour was one guideline that I would not follow. I am not saying that this is what you should do, but it is what I do. My work as an RN required me to be at the hospital at either 6, 0630 or 0700. And ready to run on roller skates, cause we were so busy, till my morning break around 10. I took my Synthroid as soon as I woke up in the morning, made the coffee, and took a quick shower. Then I had my coffee. I had no concerns if it was before 1/2 hour. (I use a little cream, too.) I never varied the routine.

My endo said it was fine, that the main issue was to be consistent. Other than that, I do not eat for 1/2 hour, I always drink a whole glass of water, and I wait 4 hours or more, to take Vitamin D or Calcium.

Now that I don’t work, I do the same thing. I realize you have just begun your Synthroid, so my first suggestion is to consider having the Synthroid right by your bed, with water.

I guess I am writing because I totally understand the ritual of having a cup or two of fresh coffee first thing in the morning. Since you are just beginning, I think that when you have a moment, do ask this question of your endo see what they say, if you have coffee a bit earlier than 1/2 hour. I imagine that the reality is, that for me it is about 15 minutes, by the time the coffee is done.

Other stuff-it is possible you have a headache because of coffee withdrawal.

As you quickly learned by going back to work, that is too early. I went at the end of week two, and for a demanding job where I had to think all the time, run all day long in the hospital all day, that was too soon. I think returning at the end of week 3, or returning with reduced hours sometime during week 3, is far preferable.

Labs-probably the next time, your labs will better represent where you are,and perhaps your body too. Fine to have the labs at two weeks for information, but at this time, you still probably have some thyroid hormone floating around your body. And, generally, labs should be about two months apart to provide information for decisions to increase/decease the med.

I think your sleep will settle down. I did notice my sleep was not as sound, and I woke up more frequently. But hard to figure it out, for I had a baby, too.

Anxiety. Hey, you (we) have had a lot of hits to our body and life with Graves’ and surgery. I am guessing that all will settle down. If you have a stressful job, work is really harder for a few weeks, but you will be back to baseline.
Shirley

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in reply to: Saw thyroid surgeon yesterday #1177371

My experience-
was on PTU, like you. Was stable,don’t recall how much. For me, I wanted to MOVE FORWARD, as fast as possible, have the surgery. This is what I did.
I was so so glad, other than a bit of a sore neck, from the extended position of my head during the surgery, not from the surgical site, I was fine, hard to chew steak for a few days, just a lot of work. No nausea, minimal discomfort, no pain, tired for a couple of weeks. but out and about the 2nd week, short walks the first week. Had help with meals, laundry and baby. Needed it.
Went back to work full time as an RN too soon, beginning of week 3. If I had to do it again, I would go back part time that week, or not at all so I could have fun, that 3rd week.

There are other posts by adenure about her experience, more recent than mine, and also posts my myself and others about the post op period. I went home the next day. Pretty smooth sailing for me all the way around. When I had my surgery, the practice was to leave a teeny tiny bit of thyroid gland, hoping it would crank out the right amount for a long time. this worked for me for 30years, then I began to need replacement.
Shirley

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in reply to: Living with Graves Disease… #1177494

We will be your family who understands, and help you slug through all of this.
Use the search engine, read some of adenure’s posts (Alexis) She also had elevated liver enzymes,and I think you will find her posts encouraging as she traveled down this road..as we all have done.

Not sure about the anemia.

You need:
1. a compassionate and good endocrinologist who treats Graves’ and understand it (and us.)

2. I suggest you try to find a neuro-opthalmologist (as a regular eye doc if they 2know of one, and/or ask your primary (do you have one, it is hard when you are a student, you may be using student health?) Good for you, going to urgent care. It is good to have any eye doc who is familiar with TED (thyroid eye disease) It is very wise, and safe for your eyes, to get a baseline exam. You may be dealing with TED and Graves’ but maybe not.

In the meantime, lots of eye drops if your eyes feel dry.

Your family needs:
to read about, and understand what is happening to you, that it is serious.
Kimberly’s suggestion are a great place to begin.
And, while you are at it. ask family members if they know if any autoimmune disease in the family, and or anyone with Graves’.

ANd, welcome, welcome, welcome. If you read a few posts, and/or use the search engine to find the subjects you are wondering about, it really really really does help to know you are NOT ALONE, AND NOT CRAZY. This is the way we all felt.
Shirley

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in reply to: Jump in TSH #1177446

Here’s an idea! Move to SEattle, get your NP, and then be MY NP!
And, yes, I completely understand your reluctance to go back to academia, struggle to get into an NP program, spend a ton of money and 2+ years of your life, to begin a private practice in your mid-fifties. I also have a Masters in Nursing, and considered being an NP when I was in my mid-fifties. But I could not BEAR to go back to school again, with all the mickey mouse that accompanies some good stuff. There are RN’s in the NP program here who have NEVER spent a day in clinical practice, except in school. Most have not been on a good ole’ med surgery floor for any time at all.

Yes, Alexis had a great reminder about post TT. I did escape all bumps after my thyroid surgery, but I had it so long ago, that I had a sub-total thyroidectomy, so was euthyroid for about 25 years. Then began Synthroid, so after the crazy time at the beginning, and having all the docs miss the diagnosis for far too long, my Graves’ experience has been relatively smooth.

BUT-I did not know one darn thing about TED, or if I did, I had forgotten it completely. And that did not hit me until 5 decades later. Of course, the first five ophthalmologist I saw, did not think of it, either, they just kept prescribing different RX’s, saying my eyes were “sure changing a lot.”
Well, they were, and not until I got diplopia, and saw two monitors, when was working in preop and postop, did I realize that something was super wrong with my eyes. For me, TED is worse than Graves’, but that is because for me it was, and still is, worse than Graves’.

Thanks for your explanation of all that you have done to get an endo appt.
The endo you had, sounds very concerning, that she is like that. I think your assessment is probably correct, unfortunately. She sounds very unsure.
Scary.

I don’t know a thing about the mcg/kg, but I have “heard of it” before.
It has always been my impression that it is entirely guesswork on where to start Synthroid. Because of where it is metabolized, and how, I don’t see a lot of reason why weight matters. Well, if you go back to school, this can be your dissertation!!!!!!!!
Shirley

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in reply to: synthroid vs armour? #1177391

Stymie! That is such a cool name.
Thank you for the additional info on Tirosint. Didn’t know that. Most appreciated. I love to know more about meds, Graves’ and TED. And all other things!
Shirley

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in reply to: Jump in TSH #1177441

The symptoms fit the lab, as Kimberly (and you) noted. Yes, this big jump is possible. Yes, I have heard of this radical change from people who are just beginning to take thyroid replacement. The dose you begin with, is pretty muc an guess. You have to begin someplace. So it is possible that it was too low to begin with. It takes TWO MONTHS minimum to really evaluate a dose change. You do not get reliable information before that, or at leaste 6 weeks. I think you will find that the surgeon will not be interested in following your Graves’ path. How about a primary are doc? Many are pretty good at managing synthroid, ordering labs. And ask for the lab you want, other than TSH. Do you have one?
You need a doc who will be interested, with whom you can actually contact when you have questions.

I suggest to you that you ask the surgeon’s office to call a referral to the endo’s office, also that you call, put yourself on a cancellation list.
I am sorry you feel so crappy, People do not understand how terrible hypo is until they experience it.

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in reply to: RAI and radiation exposure to others #1177378

Hi Michaela,
I am wondering how you are progressing with your quest for knowledge and an answer regarding you, your mom, RAI?
I wish the best of luck to you. In the even that you decide on surgery, rest assured that there are lots of folks on this site who can be very helpful to you, including myself.
Shirley

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in reply to: Well, here goes! #1173583

Hi AzGravesguy, ie, Robert (I think)
Your GP doc sounds GREAT! Stick with this awesome guy. I do understand the frustration and delay with getting an appointment with an endo. It goes a lot more smoothly after the first appointment. The people at the desk who control that flow, have the schedule, and on the schedule there are blocks for
New Patient appointments. They are usually much longer, for most endocrine issues are complex (as we certainly know) and they schedule a much longer time, usually 40 min to an hour if you are really lucky.
And then, of course, you have no idea if this endo is the endo for you!
I really like the doc you have, your primary care doc, and it seems that he really has learned quite a bit about Graves’. Have you considered asking his office to make the referral, to the endo? Generally, most specialists (the front desk again) will ask to see recent labs, and some clinical summaries of your”journey” with Graves’. And, I realize you may have already done this,
and it is still a 6 month wait.)
(I am not sure how I feel about this journey stuff, it is becoming an overused word with varied meanings!)

If this has not been done, I suggest you ask you doc what he thinks about that, just for “fresh eyes” to take a look at you whole Graves’ history, and the problems you have.
If you think your primary would find that threatening, I would be surprised, but that relationship you have with him is money in the bank, as far as I am concerned, he sounds empathic and human, and accessible.

There is such an epidemic of diabetes in this nation, that the endo practice
is packed with them.

I am glad you have established some good vibes at work. It takes a lot of work on every level of living to have this damnable disease.

Sorry-I don’t recall you insurance situation right now. Is it still absent from your life?

Thinking of you a lot, so darn sorry this has been such a nightmare for you.
Shirley

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in reply to: Graves disease and shoulder adhesions/capsulitis #1177398

Super short reply for now. I am SO sorry about your continuing pain. Chronic acute pain is not good at all.
I do not know, have not read, anything associating the two conditions. I hope Kimberly does some research on this. My quick impression is that orthopedic surgeons do not know, nor would they give a diddly squat about anything thyroid or endocrine. (I work in health care, too!!!) Unless it is a bone, I can’t imagine them being interested.

OK, mea culpa, I read the mayoclinic website, and both hypo and hyperthyroidism are mentioned as a factor. I don’t know if this is based on an anedotal study, or a good one.

My question now, is what measures can be taken for adhesive capsulitis to help YOU? I read that it has three stages, and it actually dissipates and resolves in a period of 2-3 years.

I am sure you have done a lot of your own reading, and know all of this.
AND, from what I read, whether you do/don’t know, the course of this shoulder business, or the treatments that exist, would not change. Which you also probably know.
I sure am sorry. Not fair! I hope you get the the third stage of almost complete recovery, very soon. Looks like you are more that ready for that, dealing with this for 2 long years.
Shirley

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in reply to: synthroid vs armour? #1177387

Tirosint is equivalent to Synthroid (T4). It is T4, levothyoxine in a capsule. The difference is that the capsule contains liquid.
From my view, in my situation, I don’t see any advantage in it at all, and a possible disadvantage that it has not been around long enough to know that the doses are equivalent to Synthroid.

From my understanding, Armour has some added T3 to the T4. My endo says few people profit from it, and to take it properly, it needs to be taken 2-3 times a day, which is hard for compliance. If taken only once a day, the T3 dumps out all at once, and the blood level is all over the place, causing changes in how you feel at different times of the day.

My endo said that a very few people seem to do better on it, and the docs are not really sure why. Most people take it, either don’t like it, or don’t want do the frequent dosing, and simply decide not to use it.

Maybe Kimberly can add, and clarify anything I have said that needs clarification.
Shirley

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in reply to: Saw thyroid surgeon yesterday #1177367

Hi Amy!
Sorry, here it is.

http://parathyroid.com/parathyroid.htm

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