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in reply to: Has anyone ever done Reclast IV? #1061986

Hi, you are correct. The standards of care have been changed to every two years. As you said, this is day #5. You sure have had a lot of steroids, Medrol for a year is a long time. I suggest that you do call the office today, leave a message with your exact symptoms. Also ask what you can take to relieve them, and when you should call back if you do not see improvement in your comfort by Wednesday. As I remember, ibuprofen helped the bone ache, but it was not that big of a problem for me , and I was not unhappy. Having Zometa (same thing as Reclast) has vastly improved my bone health. The risk for fracture is so great,t hat I am very glad to have this available. There are ongoing studies on this drug. I am so sorry you are having continuing discomfort. It sounds like you were already in pain with pretibial myxedema. So that makes everything worse for you.

I do not think it is reasonable or logical at all to even consider suing anyone. You have not been mistreated. And to clarify, you have said that no person, at any time, spoke with you about Reclast before you had it? That seems unreasonable.
Having said that, when it was suggested to me, I was grateful, for I had severe osteoporosis (lot is chemo and steroids for TED)
and it has definitely helped me. You probably will not know if it did/did not help you until you have another DEXA, which probably won’t be a year or two. Presume you had a baseline DEXA?

Erica had some nice suggestions re massage, and having someone to go with you to appointments. If you want someone else to have access to your medical records, you do need to sign a Medical Release of Information Form. If you have not done that for yourself, I suggest you do that, asking dictated reports and labs results sent to you so you can have your own file at home.
Shirley

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in reply to: Has anyone ever done Reclast IV? #1061983

Yes, I have had Zolendronic acid, which is the same as Reclast, or Zometa. I have had it IV once a year for the past ten years.
I take it for to improve my bone strength, for I have osteopenia, and some osteoporosis. It has really helped my bone health, and most of my osteoporosis has moved to osteopenia. (I did have breast cancer, but no metastatic bone involvement. This is how it was first used.)

I gather from your post that the endo prescribed it? Or another doc? Do you know why? Did you have IV over 15 minutes? Was the dose 5 mgm? Some people have some transitory side effects for a few days, namely aching bones, or general malaise, even flu-like, just not feeling 100%, and sometimes feeling crappy. It resolves in a few days.

I have no idea why your research tells you that it is not recommended if you have had a thyroidectomy. I can find no reference to this, even an unreliable one.

With hyperthyoidism, the incidence and onset of osteoporosis is increased, and it is one if the worries (along with cardiac) that docs are concerned about with untreated hyperthyroidism, especially over a long period of time. Prednisone is another drug that raises havoc on bone strength.

I think you will feel better soon. Would you have refused the drug if you had received the information sheet before the treatment? What is the reason it was prescribed? If it has been suggested that you have it once a year, and you do not want to do that, or do not want it for any reason, just don’t get it again. You do have that choice with this drug. (but we DONT have that choice with our thyroid hormone if we are taking it! (:
Check all I said out with your doctor, too.
Shirley

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in reply to: RAI 14 WEEKS AGO #1062014

It varies with each lab and the controls they have set up.
My lab is 0.6-1.2
Shirley

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in reply to: Grave’s Disease Diagnosis #1062030

Hi Sally, I read this post after I responded to your most recent post.
Yep, we always have Graves;, and we will always need labs. I had a thyroidectomy, too. After the remaining circulating antibodies are gone, reflected by labs and how you feel, then the endo probably will begin by prescribing a small dose of thyroid hormone-I take Synthyroid. So expect the frequent labs you are probsbly having now, but later on, when you get tojust the right amount of hormone, you will feel good, like "your old self" and have less frequent labs. Over the years, I have had rhyeoid labs once a year, and more often if I begin to have feelings of hypo.

Over a lifetime, thyroid production can change, especially as we age, in the normal population, too. So there are people (mosrly female) who may begin to take a small dose od thyroid in their 40’s (fatigue, feeling different than usual.)
Shirley

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in reply to: Post-Thyroidectomy Antibody Levels #1062036

Hi Sally, I sure am glad you found this site. I will try to summarize my experience. Since I cut my left index finger while cutting rhubarb a couple days ago, typing is challenging, r/t big bulky bandage in finger!

I agree with Bobbi re antibodies. Knowing the antibodies, will not affect the treatment for Graves, or TED (thyroid disease.) Sometimes it is ordered to comfirm, or add one more piece of information to the diagnosis of TED.
In addition, most doctors know this, and know that it is likely to be rejected my most insurance companies. AND the insurance companies know it, too. Having said all this, if you want the test, check with your insurance co. to see if they cover ir. And if you decide you want it, tell your endo it is imortant to you, and you are willing to pay for it.
As Bobbi indicated, anrtibodies fluctuat(in people with no disease), and lots of research needs to be done to determine the meaning of all of this. The endocrine system is super coomplicated, and like the brain and genomics, there is a lot that is not understood.

For Graves’ the TSH,T3, T4, plus your own symptoms, confirms the diagnosis, and need for ATD (antithyroid drug) and probably a beta blocker (for a fast, pounding heart rate, elevated blood pressure.)
If you use the search engine, and/or even look at some recent posts, there are some good explanations of the three treatment choices for treating and managing hyperthyoidism (Graves’)

Now, your eyes are a different story. I encourage you to make an appointment to see a neuro-ophthamologist, who will carefully examine your eyes. There are two phases of TED-active, or hot phase, and inactive, or cold phase. LOTS to say about this, and my experience, but typing is a challenge. Your endo is not the person to be following you for TED. It’s related to Graves’, usually. But a whole different ball of wax. The neuro/opth doc can check you regularly, to be sure your ability to see remains good. Rhere are some beginning signs of changing vision. Sometimes, surgery is necessary to relieve the pressure on your optic nerve (called optic neuroparthy. With TED, while you are in the active phase, eyes and vision are changing all the time. When they stop changing, by your observation,and by the objective measurements eye docs, survival procedres can be done if needed. Id the double vision is making you crazy, sometimes prisms in glasses will help.
Shirley
I am going to serd a brief PM (personal message to you now,)
Welcome again!
Shirley

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in reply to: nodule or not? #1062039

Hi Erica,
do write when you know more. And have a conversation with you doc about what "your" nodule means. There are a lot of benign nodules, which means basically, "ya, you have one, and it is not a concern at all." I am sure your doc will go over this,but do ask. And…I do hope you don’t have Graves’ again, but keep track of all your symptoms, report them, ’cause if you do, of course you will need some medical management and the drugs which you may need. Good luck.
Shirley

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in reply to: We had dinner last night with Dianne and Ken Wiley #1068280

Hi Jake, I am trying to contact Dianne Wiley to hear her experience with eyelid surgeries, specifically palatal grafts to lower lids. Can you assist me in contacting her, or contact her to tell her of my interest? Most appreciated if you can help.
Shirley

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in reply to: Great I have Leukopenia #1062052

Hi Polly,
What a great medical team! You can rest assured that you are being very well taken care of! I am sure they ordered another CBC on Saturday to be sure that your count is not continuing to drop, or is at least stable. I am very familiar with WBCs for I had my WBC checked carefully and frequently when I was taking a buttload of chemo for breast cancer. It began climbing a few days after my last chemo. But that is a whole different subject, too.

I am suggesting that is good care, and they do not want to wait a few weeks. It takes a few days to see a trend. And you do have another option for ATD, and I imagine you will be hearing about it. Methimazole is usually prescribed as a first line ADR, and the other one is PTU, propylthiouricil. But your major concern is the reason for the leukopenia. As you were told, there are two most likely causes to "rule out." And you OTHER major concern is your hyperthyroidism! What a ay!

I am sorry that you did not receive the information about the signs of a possible decrease in your WBC’s, and the resulting leukopenia. The pharmacist definitely should have addressed that. I imagine it is in the accompanying literature with the drug, but those inserts say so much, that the important stuff can get lost!

I am not sure how long you have been on methimazole. It is the standard of care with both ADT’s to check labs for liver function, and CBC (cell blood count.) Did you just begin this drug or have you been on it a long time?

Do check your BP and heart rate and record.
Believe that this will all settle down.
Keep in touch!
Shirley

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in reply to: Thyroid storm #1062060

Hi, I cut my index finger last night cutting rhubarb, so my typing skills are limited. I don’t know, or do not recall, if you are on ADTs and beta blockers now. Perhaps by now you have your labs back. When the doc knows your symptoms, I am guessing you will begin these meds, or up the dose. Usually thyroid storm occurs when a person is untreated with ADT’s and beta blockers (atenolol, propanolol as examples.)
Because it is challenging for me to type, here is the following reference, which pretty much sums it up.
A rapid, sustained heart rate should prompt a visit to the ER to be evaluated. It is a cardiac issue, treated independently, vur in tandem with ATD’s and management and Graves;.
http://www.nlm.nih.gov/medlineplus/ency … 000400.htm
Write with an update ad=fter you know your labs.
Shirley

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in reply to: Back to the drawing board… #1062070

Hi Saumya,
I am sorry that you have a boatload of different autoimmune diseases. That is tough, and some of the meds you are taking are very big guns, that is for sure. I sure hope you get some relief from your multiple symptoms from your diseases. I understood Jenni to want info from others on treatments for her Graves’, and of course that really is a different path than the multiple variety of your autoimmune illnesses. It’s really amazing how many there are!
There are 80 known diseases, and probably a lot more yet to be known. Reference:
http://www.nlm.nih.gov/medlineplus/auto … eases.html

It interesting to me that you mentioned rituximab. There was one small controlled clinical study (now closed) which did show some improvement in the inflammatory stage of TED. The population and sample was extremely small. Jim Rosenbaum, MD at the Casey Eye Institute is a doc whose specialty is inflammatory disease processes. There is also a doc at the Univ. of Michigan, whose name escapes me at this moment. But, as you said, Rituxin and methyltrexate are significant powerful immunosuppressants, as well as Imuran and couple others you have been prescribed. The risk/benefits outcomes must be weighed carefully. I guess you get a lot of labs, huh??

Sure hope you AND Jenni get some relief and improved health. It is very important for folks reading your post, to realize you have multiple autoimmune disease. Thank you for pointing that out. For many of the meds in your specific health situation relate to your other issues. and not be regarded as appropriate for Graves’. Good to check with docs, or multiple docs to weigh pros and cons of being immunocompromised.
Shirley
Shirley

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in reply to: Back to the drawing board… #1062067

Jenni,
As you probably know, Naltrexone blocks opiod receptors, so it is used for opioid addiction. Opioids are narcotics, such as morphine, heroin, fentanyl, oycodone, hydrocodone and codeine, to name a few. So it acts on receptors in the brain.
The general cost is approximately $250-500/month. It sounds like you are very interested in trying this drug. I have read anecdotal statements, and watched the utube videos that say it cures MS, autism, pancreatic cancer, heart conditions, to mention a few. It is a complex drug. I am sure you can find someone to write a script for it. Probably docs who treat Graves’ disease, or docs who are familiar with it, will not write an RX. I suggest you be sure of the side effects and interractions with other drugs.
It is clear that you do not want to manage your Graves’ with the methods that have quite a bit of good evidence based documentation supporting these methods. Since it is an opiod antagonist, I don’t think it will affect your immune system at all. But check this out with the doctor who will be prescribing Naltrexone, and watching you carefully when you are taking the drug.

Re Bobbi’s post, I think it was very accurate and helpful. She wrote information that you have already dismissed for yourself, so it seemed that she was attacking you. She wasn’t. You can use this information going forward with your treatment plan.
I don’t know any other treatments except the ones that are discussed on this website, namely RAI, surgery and ATD’s. I truly do not think her response was demeaning or condescending in any way. She provided information for you to add to your collection of thoughts while you decide what to do with yourself. Do watch your heart rate if you are hyper. Serious stuff can happen if it is really rapid. As you know, when you are hyper, everything is in overdrive. So be aware of a rate over 120 for a sustained period of time. ARe you taking a beta blocker for for your heart at this time? It is a stand-alone complication of hyperthyroidism. I can speak to this from my own experience, for I had a thyroid storm (on ADTs and beta blockers, but not enuf.) It is a life threatening emergency. Just wanted to share my own experience.

I wish you the best. There really isn’t much more anyone can say except support you in your decisions, keep an open mind, and I sure as heck the stress can decrease a little bit for you. I am so sorry that you have all this on your plate.

Regarding the rest of your life, you have an incredible amount of reality-based stress. It sounds overwhelming for anyone, whether they are hyper or not.
Shirley

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in reply to: Surgery….Next week!! #1062083

Julie, I am an RN, have worked for a million years, on the floors, preop postop, pacu, the whole nine yards.
I also chose a thyroidectomy. The good stuff-it’s really a relatively short surgery. 45min to @ an hour. Post op it is like having a sore throat, plus some sore neck muscles (like doing neck stretches at the gym, nothing more.) No nausea. Surgery is too short. If you are concerned, ask anesthesia preop for ondansetron. And maybe a little midaz, too! A great drug. I call it the "forgetting drug." Prepare something you like before surgery. I made chicken noodle soup. No prob eating bread. I’d wait a few days to chew steak! My incision healed beautifully. I can’t see it, unless I really try to find it.
I chose surgery for all the reasons you are choosing it. I think you will be very pleased! WRite with more questions, and/or write a PM if you prefer. Also, lhc11 weighed pros an cons for a long time, and she choose surgery last summer. She (and others) have some good blow by blow posts about it.
It was a great experience, and it fit my need for taking action and instant (well, more instant) gratification in a disease where there is precious little of it! Got pregnant as soon as I was euthyroid, probably about 4 months or so postop.
Shirley

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in reply to: Shingles Question #1062096

It seems to me that the real issue is being TREATED for your shingles, if, indeed, it is shingles. And the medicine that clears it up, takes away the itching and pain, is the anti-viral acyclovir. But this is something you should check out with your doc. However, you say that you have had shingles off and on for 20 years, so perhaps you know all this, and your question is not about relief from shingles, but simply if it is associated with Graves’. If you have been having shingles for 20 years, then it is probably not related to Graves’. Stress can exacerbate, cause a shingles outbreak. Basically, the virus lies dormant, then raises it ugly head, and there is another outbreak.
Have you had acylovir in the past 20 years for your shingles?

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in reply to: Shingles Question #1062094

good question by Ski!’
If true shingles, have your doctor prescribed acyclovir for it? Please ask you doc.
Shirley

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in reply to: Is there a better method over all others? #1062103

Hi, I am writing to tag on to Kimberly’s great comments. The method that is better, is the one you choose. We all make our decisions for our own personal reasons. These reasons can be based on fear, thoughtful weighing of pros and cons, pregnancy plans, and simply "I don’t want that and that, so I will have this!" I chose surgery. Variables to consider with surgery for me was finding a surgeon who routinely did this procedure. Both RAI and ATD’s are treatments I did not particularly want. For me, surgery seemed the quickest way to get back to normal, get on the right thyroid dose, with fewer variables involved (for me.) Other people don’t want a thyroidectomy as much as I did want it! So you see how it goes. Perhaps you feel so strongly about not detroying your thyroid with RAI or surgery, that ends up being YOUR personal reason for choosing ADT’s. As Kimberly said, pregnancy can be managed with ADT’s.

But there a few definite "givens" that go along with Graves’.
You will have labs the rest of your life, and you will take meds the rest of your life if you have any of the choices you mentioned. And you will have Graves’ for the rest of your life. Fortunately, it can be treated, it can be managed, but it can’t be cured.

YOu did not say in you post, but I am wondering if you have been put on some ATD’s and maybe a beta blocker (for your heart rate) already when diagnosed.

For your information, please confirm with your doctor that your heart murmur is related to your cardiac symptoms. As you have probably been told in the past, many people are told they have a murmur, but generally they are not relevant or harmful. It’s good for you to understand the relevance of yours. But the palpitations, fast heart rate, some chest discomfort, etc etc are typical of hyperthyroidism. There lots of good references for you to read about Graves’ on the home page of this site.
Shirley

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