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in reply to: New Member #1180224

Hi Jolilly,
OF COURSE he is scared! Just like we are.
Sounds like you are having good care, with the right doc.

I think it helps to look back to when we did not know a doggone thing about Graves’ or TED. We found out, ’cause we “got” it. And before that time, almost all of us knew absolutely nada, nothing about any of this. We are learning now because it is US it is happening to…….. it helps me to have this perspective.

Now, I am not running out of the house to my beginning traveler’s French class, I am going to bed!!!!!
Shirley in SEattle

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in reply to: New Member #1180221

Hi Jolly, brief note, cause I am literally running out the door to a class. This site is reliable, and we all vent here!!! Graves’ TED (thyroid eye disease) are terribly disrupting events in our lives, and they are serious.

I hate prednisone, too, took it for the same reason, to save my vision. You may have already been told that you have optic neuropathy, which is plain speak, is pressure on the optic nerve.

As Kimberly said, prednisone is a short term fix. But a very valuable one.
I imagine your eye doc will refer you to an oculofacial surgeon, for an OD, orbital decompression. Much more to say about that, but purpose is to take pressure off your optic nerve, to save your vision, it is a surgical procedure.

Tell your husband that prednisone DOES this to any person. And you are most likely on a high dose. I think I was on 6omgm/day with a long, long taper, cause you cannot abruptly stop that drug, it needs to be decreased a little at a tlme, over several weeks.
Maybe it would help for your husband to go to a drug store, ask the pharmacist to explain predisone, and say why you are taking it. All the bloating, IRRITABILITY BIG TIME, EXCESSIVE APPETITE, SLEEPLESSNESS, ARE par for the course.

Gotta go. Or , have him read this post.
more later,
Welcome, this will all simmer down, and life will be normal again, maybe with light sensitivity, and wearing sun glasses. But you will see as long as you receive the appropriate care as I described. Sounds like that is what is happening. Most people have mild TED. I did not, as you can see by my list of stuff I had done.

Shirley

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in reply to: Suppressing TSH #1180211

that is also my understanding
Shirley

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in reply to: My baby girl #1180166

Gosh, I am not sure what to do/think, either.

In my opinion, feeling a pulse and counting it ranks a bit higher than a machine, but as i reflect on this, a lot of medical decisions are made with machines in the hospital, and feeling a pulse manually is less common now.

Certainly a pulse rate of 59 is a bit rapid, but does not meet the criteria for rapid, tachycardia (means over 100 for an adult)

YOu’ve got a historic relationship with the peds endo. I think it is better to try to work with him if you have generally been happy with him.

I can see, with the labs, pulse rate, and perhaps a bit of understandable bias toward a 15 year old who is irritable (i think being a teenager is tough for everyone!) that a “watch and wait” plan seems to be what the endo might be thinking.

Maybe the antibodies will help with a definitive diagnosis, plus the ultrasound. Seems they are doing all the right stuff.
Shirley

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in reply to: Question & 6 wk post-TT Update #1180196

Kimberly, the TSH only recommendation after TT, sure is illogical and makes no sense to me. HMM. “After a TT” is FOREVER! Since the recommendation for thyroid replacement management, pretty much now is saying to always do the additional testing of the other T”s, free T3 and total T4, (or at least one of them)

So by this stated recommendation after TT, it follows that for the rest of our lives, the management of thyroid replacement hormone. Which I don’t think is correct, or in sync with the current standard of care and guidelines.

Can you straighten out my thinking on this?
Shirley

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in reply to: Eyelid surgery a breeze #1180186

Hi, yes, that was my experience. Piece of cake.
Shirley

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in reply to: My baby girl #1180163

Hi Diane,
What is her heart rate? Do you know what it was when it was rapid?
Of course the heat intolerance is part of it, as you know.
Of the symptoms that she has, heart rate and blood pressure AND how she feels, AND her sleeplessness (what a word!) certainly lead you to watch, see what happens in the following weeks. Her racing heart and BP should be checked.
Is she willing to do that, or even talk to you about how she feels? Does she know how to take pulse, count it for 15 seconds, multiply by 4, write it down?

YOu do have a dilemma with her.

I suggest you get hard copies of her (and your labs) keep them in a folder.
You do not want to rely on being told on the phone that her labs are in range.
Not good enough. GEtting copies is always a good idea.

Also it is a great idea during any visit to get the lab order for the next time, so ou can go at your convenience.

I suggest signing a release of information form, getting copies of what is said for each visit. That is what I do.

YOu have a little time, I guess, if her heart rate is not crazy. If it is faster than 100, somebody needs to know this. You can also explain to your daughter that you know this is all a big pain, and you understand, but if there anything going on with her, you want to deal with it so she can be ready for school, and life.
Shirley

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in reply to: news from doc appointment #1180181

Oh, Allie!
That is a lot for you to deal with and think and worry about…. But good that you do not have lupus. When read about connective tissue disease, go to a reliable website, NIH, Mayo Clinic, Cleveland Clinic, University of Washingon medical center are suggestions. I know at least six people with connective tissue disease. Most of them go to a good rheumatologist for continuing care. It is complex, and in the long run, you need a doc who really does work with that a lot.

I have taken prednisone several times. I don’t like it much, but you are taking a very short course. Perhaps to see if it helps you. Do you mean that you take each of those doses one day for five days, tapering to 20 mgm?

I have some questions, primarily based on my concern about your complicated regimen of meds and supplements, and also from what I do and what I have learned. I know you have lived long enough that each doctor may prescribe different things, have different thought of treatment, and of course, you have your own preferences and opinions, too. I respect that a lot.

My thoughts with questions.
1. Is it your idea or someone else’s to take a lot of supplements?
I ask, because i don’t take any of them. I did have my Vitamin D checked, it is super fine (50.)
I have a cardiologist, for I have some heart stuff going on, and the cardiologists are pretty much concluding from some long term longitudinal studies, that unless there is a deficiency, it makes no difference one way or the other. Assuming you/we eat balanced meals, and eat basically the way we have eaten all of our lives, it has been nutritionally healthy and balanced. There is an interesting article in the Science Section of the NYT on this very subject (i think it was today.)
My question behind my question, is I am wondering if you can work on taking many less pills of all kinds. But depends on your belief system on all of this. It is a big industry, it makes lots of money. So that is my two cents on that subject.

2. Next…
There REALLY is controversy about Cytomel. I do not recall how long you have been taking thyroid supplements. Most endos don’t encourage it, and some will prescribe it if the patient asks for it. Some do, if the patients ask for it, because they just don’t feel well, or feel tired, and think it will help. The downside of it is that it metabolizes VERY quickly, and so there is a big “dump” of the T3 (cytomel) and then it is gone. So a person can potentially feel more energy, then feel a crash. So the schedule you are on now is very hard, and you should be taught about the drug,and what to expect about it. Also, you should know fairly quickly if it does or does not make you feel better. Most people who want it, simply stop it, saying they could not tell any difference.
A good conversation to have with your doc.

Here is a short explanation of what I am explaining from the FDA:
Quoting from the discussion.

Pharmacokinetics (means how it works (my words!)

Since liothyronine sodium (T3) is not firmly bound to serum protein, it is readily available to body tissues. The onset of activity of liothyronine sodium is rapid, occurring within a few hours. Maximum pharmacologic response occurs within 2 or 3 days, providing early clinical response. The biological half-life is about 2-1/2 days.

T3 is almost totally absorbed, 95 percent in 4 hours. The hormones contained in the natural preparations are absorbed in a manner similar to the synthetic hormones.

Liothyronine sodium has a rapid cutoff of activity which permits quick dosage adjustment and facilitates control of the effects of overdosage, should they occur.
So it worth questioning his rationale. Most docs try very, very hard NOT to have meds on certain days and not others. This really tough to be compliant with.

3. I just HAVE TO ASK! My thought is that suddenly, or gradually becoming gluten free is a VERY BIG DEAL! And another bandwagon that everyone and their brother seems to be jumping on now. Why has he told you to have a 100% gluten free diet?
What is his reasoning? This is very very difficult, and if you have symptoms, and you know it, a trial of eating less wheat, or no wheat, rye and barley for a week or two should tell you something, one way or they other. Most people say they have GI symtoms, bloating, and more if they eat gluten. They may have gluten insensitivity.
Celiac disease, is a whole different ball game. Usually, you would have known long ago, if that were anything you were dealing with. There is a very sensitive lab test for celiac disease, if you have concern about it.

So these thoughts and questions of mine are “food for thought.” For you.
I would really ask your doc his reasoning.
In the meantime, have a great job interview,and believe that you will feel better and get your old self back. It will happen.

In conclusion, maybe another day we can discuss the thought of you getting a second opinion…..
Shirley

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in reply to: My baby girl #1180160

Hi, no, you do not need a peds endo. They are rare as hen’s teeth, anyway.

I suggest you get copies of her labs Also, b/c she is a teenager, you might have to hog-tie her down, take her pulse. A rapid heart rate is not good.
Do you know what it is running?

I would not be able to reconcile her being OK with her labs so close to being out of range. Plus her symptoms.

Yes, if you did not have Graves’ yourself, you would know nOTHING about Graves’. And since she is 15, you could have attributed all her symptoms (except rapid heart rate) to being a teenager.

It is hell to be hyper, and not good for her. If you can’t get her to an endo, maybe your primary doc. She needs some education, too, perhaps the rapid heart rate is something that can concern her if you can relate it to the fact that it will impact her health and what she can do.

The symptoms are so classic, I hope she can be seen and treated. I know it is easy to say, hard to accomplish.
Shirley

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in reply to: Having a baby? #1180141

HI!
I agree 100% with you on all that you said! Glad you having liver labs,a nd that you have been proactive about getting labs now. Yay.
You bet, that IS a true allergy! For sure.

When you see endo, I would have a non confrontational conversation, simply for your education, and to evaluate your endo, expressing your concern about having labs so infrequently. This really is not the way to go when first diagnosed, with changing symptoms, and possible dose changes, either up or down.
Shirley

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in reply to: My baby girl #1180158

Just a quick note right now. i am so darn sorry. To be 15, and have probable Graves’, not feel well, is pretty much over the top! As you know already, we are other Graves’ people, but we learn so much from each other!

Yes, I think definitely she should be seen by a peds endo, and/or any endo who is familiar with Graves’. Regardless of the labs, the fast heart rate is a bad place to be. Plus, she has cardinal symptoms of hyperthyroidism. My thinking is that she needs treatment now. Not later.
I think in her case, antibody labs are very good idea.

I have gone to a couple GDATF conferences. I met teenage girls both times. I am hoping Kimberly weighs in here, for she may have more information about teenagers and Graves. I remember how THRILLED these girls were to find each other. They were at the conference, probably under some degree of protest, and the whole experience was soooooo empowering to them. Especially in a reliable, trusting environment, with very skilled and experienced speakers on all aspects of Graves’.

Shirley

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in reply to: Plummers nail #1180144

Hi Randi.
Darn, just lost my whole post by looking up something else re plummer’s nail.

I suggest you make two copies, one for each doc, the following article from the Journal of Clinical Endocrinology, written by docs from Johns Hopkins. Plummer’s nails are associated with Graves’, hyperthyroidism, and sometimes with hypothyroidism.

So you better not hear that it is not Graves’ related!

http://jcem.endojournals.org/content/90/4/2428.full
This article has several references, all stating the same thing.
It even mentions the ring finger.

And even Wikipedia agrees! Ha!
http://en.wikipedia.org/wiki/Plummer’s_nail

Most of the literature suggests that it goes away when Graves’ is under control. I could not see any specific treatment.

Regarding him, the labs look good, and he feels pretty good except for sore muscles? How long has he been on methimazole?

Always good to hear from you
Even with problems.
Good forum for that
And, of course the usual caveat, I am not a doc, “just” a fellow Graves’ person
Shirley

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in reply to: Having a baby? #1180138

HI! And a big welcome to this marvelous forum. And, as you know, we are fellow Grave’s folks. But if you use the search option, putting in different words, “pregnancy, or pregnancy and Graves,” you will see a lot of posts.

Our facilitator, Kimberly, will have very good references on this subject.

I also fed my babies way past a year. I loved it! My experience is that I proceeded to have two more babies after Graves’. No issues, no problems at all. The baby needs to have thyroid labs shortly after birth. And a pediatric endocrinologist should manage his/her care.To synthesize and reflect what you said, I think you have the right idea to move forward with getting the qualified docs involved in your care, so you know you have them, that you are happy with them, and that worry is off your mind.

You want to have another baby. Graves’ is no reason to close the baby factory, but it is a reason to give you pause, to get healthy before you decide to try for #4.

As you know, you definitely need an endo who has experience with Graves’ ad pregnancy, but there is much to be done before that time. You have been diagnosed only 3 months.

There are some good references, and many good posts about this, but your decisions are three options. The quickest one is surgery (TT) a total thyroidectomy. RAI takes a lot longer to be ready to get pregnant.
And you are interested in ATD’s. That is fine, as long as you are being followed by a high risk OB, preferably one who is familiar with Graves’, and your end.
1. Did you have a true allergy to MMI (methimazole.?) I am asking, because this is definitely a cause for attention, but there are allergies….and allergies.
A small rash, and hives. Good to discuss with your endo. Do you feel you cannot take MMI? Or was this a quick decision made because of a minor rash. Just asking…..

2. Speaking of ATDs and liver function tests, liver involvement is VERY rare, but the incidence is most prevalent at the very beginning of treatment. I would ask you endo about this in this form of a concern. I’m thinking you should be having labs more frequently, and absolutely have a set of labs before August. It concerns me a bit that this was not done.

This is a response of the top of my head, and I am sure you will hear from others. Your family sounds wonderful!
Shirley

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in reply to: Bulletin for the HOT FLASHES CROWD! #1180135

This is also featured in the New York Times Science section.
For sure, this is no “answer” and it does not come without serious consideration, for SSRI’s (one family of anti-depressants) come with several significant side effects, which must be thoroughly known and understood, before trying this drug.
In the NYT article, there is disagreement of just how effective this is.

I did not like the hot flashes I had, but they were infrequent and inconvenient. If I had them like you, Gabe, I would be reaching out for ideas to diminish them and/or decrease the frequency of them, without giving yourself another problem. Unfortunately, menopause/hot flashes, and all that goes with it, don’t have an easy fix, and both of them TAKE TOO LONG to resolve.
We want the time to go by rapidly, for these two things, but it goes by too rapidly for so many other things! Like, say, summer in SEattle!
Shirley

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in reply to: Bulletin for the HOT FLASHES CROWD! #1180133

Hi Gabe!
Yes, I know there are many complexities with SSRI’s.
I was thinking of you when I sent this. At least for interest.
My hot flashes were not as bad as yours. Lasted, but quite mild, about 18 months. Every once in a while, I’d soak everything I was wearing. But infrequent.
Shirley

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