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in reply to: Well, here goes! #1173482
It might be worthwhile to use the Search Post option, find someone who has a recent RAI, or put in the word “precautions” see what you might learn from others.
Good advice from Steve if you can accomplish this. And the reference that is listed is good, too. REalize that people with thyroid cancer has a much much larger dose than Graves’ folks, so the references are wide to accomodate varying doses.
But , in the meantime, I think I remember the following, just from reading posts from others on this forum, and some are relevant to your questions.
I am hoping others see your note and share their experiences.+++***I suggest posting a new post that says, “RAI precautions, what did you do?” That will attract people to the specific subject.*******
The overal biggest thing to think about is VERY close proximity to your neck for a few days, of animals and kids. Also, be careful that there no urine splashes.
I think you will be fine driving the car pool. People will not be wrapped around your neck, you will be on day 3. You aren’t spending any long time in close proximity, you are just going to work. I am pretty sure you don’t need any of that plastic in the car.
I don’t believe there are any food restrictions at all.
I hope you get this information from others, but the hazmat suit and gloves aren’t necessary at all. I am sure this is not necessary.
Your food. Use the usual precautions you always do. Wash your hand. Nothing else.
I don’t recall anyone ever mentioning the multiple showers.
I can’t speak the plastic sheets, etc. Seems like an overkill. The big thing here is close exposure of others to the area around your neck for a few days, and being careful of urine. I am not a bit sure you need to do any of this.
**I’d ask all of your questions when you HAVE the RAI. And I am sure they will give you a sheet of paper about precautions. Ask them about the cat.
Ask them if your dose is small, medium or large, and ask them the questions you have listed.
Shirley
I know how you feel, you want to know ahead of time, anticipate everything and be prepared. But some of the questions really can be clarified the day you do this if you don’t get reliable information before that.in reply to: What would you do? #1174077I agree with everyone! Bottom line is that all of this is very hard.
Alexis, I sure am sorry about your headaches. It’s going to be hard to know the cause. Apparently they are not related to periods at all, huh?
ShirleyWell, my 2 cents says you have pretty good management and advice from your endo and the nurse.
I realize Alexis mention kgm/mcg ratio to determine Synthroid dose, but I sure could not find any reliable reference that states this. The beginning dose is kind of a guess, really for the endo. But if I were the patient, knowing how very much I hated to be hyper, I’d want to begin at a lower dose, with the next dose being determined by labs, and how I am feeling.
When we begin on a replacement after RAI or surgery, it really is a crap shoot and a beginning guess. And unfortunately it takes such a long time to REALLY make a decision about a dose change. My endo is very reluctant to do it before 2 months. 2 months is forever,but the data is more reliable that way, perhaps saving further issues determining the dose down the road.I suppose that some endos might use weight as a beginning guess, but I’d still like to see the science and documentation behind this. I really don’t know.
Determining the “sweet spot,” as Kimberly calls it, is tedious and takes way too long to suit any of us.1. I guess I already commented on this
2. 1 week+ is a very short period of time. Sounds like you are still pretty darn hypo. The supplement probably has not had time to kick in.Comment, I hate hyPO as much as I hated hypER!
3. I hear a lot of people struggling with weight, including all the facilitators, I think there are some recent posts from them about this subject.
I am guessing you will drop the recent 10 lbs pretty fast. Sounds like you are doing everything right.
***Unfortunately, there are other factors that may be coinciding with weight gain, which almost always happens to us when we are premenopausal and finally hit menopause. That might be a confounding factor for you. Just guessing.
4 and 5. Your doc is doing what I think is best for you, after a longer interval of time, maybe you can lean on him for labs at 6 weeks, see where you are.
He may be careful and conservative, but you count, too, and definitely your symptoms, and how feel about this damn weight gain. I suggest calling him now, asking for the lab requisition that you will get drawn in 6 weeks, tell him how discouraged you are about the weight. It is pretty reasonable for anyone, though, at this point, to tell you that time must pass, and it really will get better, and that you will feel better. As you know, gatorgirly and many others have this fight with weight.And, you are right, it is super frustrating and demoralizing.
Alexis mentioned the anecdotal web sites. As she knows, they tout taking thyroid hormone as a mechanism to lose weight. They are usually selling something. It’s dangerous to mess around with that.
We already know that excessive thyroid hormone can cause severe weight loss, frequently a lot of it muscle, in many of us who are hyper thyroid.
To help us the most, we need to stay on the same thyroid hormone. Maybe, after 2-4 years, when we have a LOT more information, and are still frustrated, you can ask the endo to switch to Armour or Naturthroid.
My endo said this was typical of some of us,and in every case when he has caved in, let them take cytomel, they wanted to quit in a few months, for they noticed no difference. Of course there are rare exceptions to this.
My endo said that it really needs to be taken TWICE a day, which is hard to do, because of the biochemical nature of T3.My experience is that as I get older, it is much more challenging to maintain weight and not gain. I have to watch it all the time. Doing all the requisite things, re diet and exercise. STill have 7-10 lbs I would like to give away.
ShirleyNice! Very nice! I’m not surprised. Glad you did not have to wait a long, long time for this information.
Shirleyin reply to: Thyroid Hormone replacement dose AM or PM? #1174059i don’t think there is anything definitely wrong or right about this subject.
I take mine in the morning. Interesting comments on the subject. As usual,
the endos won’t necessarily have a united opinion on this one, and there is really no particular reason why they need to.
Shirleyin reply to: New to the board but not to Graves! #1174063Hi Kiersten,
Kelly and Kimberly said everything I was going to say.
In the meantime, eye ointment and non preservative eye drops should be your friends. Use them often, to take care of your dry and scratchy eyes. Unfortunately, with thyroid eye disease (TED) our tear consistency changes, and it is not as lubricating as our bodies have been providing us before having TED. So we have to augment it with drops and ointments to protect our corneas, and for comfort.
Welcome to the boards, glad you found us.
Shirleyin reply to: * Does anyone take Metoprolol ER? * #1174046Hmmm. That is weird. Maybe try another pharmacist? That is a good question, since it is scored. Generally, as you know, extended release meds are not to be divided at all.
Shirleyin reply to: liver function after methimazole #1173424Hi, I noticed that there was no response to your post. I am writing to tell you that it is great that your daughter is being carefully watched by docs. Congratulations to you for your lovely little girl.
Is the doc a pediatric endocrinologist? Or neonatal endo?
Soon your daughter will have another lab. You are right, this is a puzzle, and the endo is the best resource for you and her.Since you are hyPO, that is not a great feeling, either. How are YOUR labs coming? Have you begun a thyroid supplement yet? How are you feeling?
I hope each of you are doing well. It is very important, as you probably know, for your baby daughter to be diagnosed and treated. A long time ago, there were kids who were compromised for life for this test was not done and the condition was not recognized as a relatively simple fix.
Again, I’m sure happy for you about your little girl. She must be smiling all over the place by now.
Shirleyin reply to: labs – frustrated and stressed #1173802Best wishes with IVF. My son and his wife did it several times, the result (s)
are two boys, almost 12! You’ve been through Graves’, and IVF is a bit tedious and frustrating at times, but it is just another blip on the screen of life.
I wish you well!!!
Shirleyin reply to: Hello and thank you #1172976Welcome! Your experiences will help others, as they travel down this darn road of Graves’. Several men have posted in the past, so I hope some of them see your post. Sounds like you are having good care, and getting good information. Many of us do not go into remission, and I don’ t know the evidenced based studies to support this. In part, it is tough to define remission, not sure if there is a definition, stating a number of years off meds. Some people take the meds, gradually taper off them, feel fine, until they don’t! The good thing is, you have a diagnosis right away, and have a treatment plan. That keeps you healthy and safe.
I imagine those wonderful children, plus job and life, keep you very busy!
Shirleyin reply to: Pain after steroid shot into eye muscle #1174038Hi, I am not sure how helpful this is, but I want to throw it out, hoping you see this before you see your new neuro-op doc. I had severe TED. Lots of double vision. BUt the treatment for that is usually strabismus surgery, for the very reason you mentioned about the muscles of the eye. And yes, the muscles are shortened and thickened, as you said. From my experience, and from what I know about steroids, any steroids for swelling and inflammation in TED is a temporary fix, hoping to reduce the discomfort, and perhaps improve the vision for a little while. But it is a stopgap measure, not a permanent treatment.
I’d like to tell you that strabismus surgery was the VERY BEST THING that happened in my whole miserable, hellish TED experience. Please mention this to the neuro op tomorrow, including the purpose of steroids.
I did have them, but they were oral and IV, to reduce pressure on my optic nerve, until I could have an orbital decompression to relieve the pressure on my optic nerve, thus preserve my vision. My own neuro op doc does not believe in direct steroid injections in the eye for TED. But I am sure if 20 doctors are asked their opinion, the answers would be diverse, and not in agreement.
Shirleyin reply to: Vitamin D & Autoimmune Thyroid Disease #1173415Excellent point, Bobbi, re Vitamin D toxicity. I agree.
Shirleyin reply to: Vitamin D & Autoimmune Thyroid Disease #1173413This is a reliable reference on the subject of Vitamin D.
http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/
A long read, but covers most things. Further study is needed in several areas. This is from the NIH
(National Institute of Health) Office of Dietary Supplements.
Shirley
In my opinion, the first step is to have the lab drawn, then have a conclusion on whether Vitamin D is needed. If you read to the end of the document, you will see that there is an upper limit where it either is not helpful, nor can be harmful.
But my main point is if another lab is drawn, and the level is above 50 (as stated is most literature) why take it at all? The body has enough.
Maybe had a lab drawn now and then. I live in an area where the sun is an elusive object for us in Seattle! My own Vitamin D level is fine, but it is a good idea to check it now and then. I think all the other relationships seem to be speculative at this time, with further study needed.
ShirleyHi. Yes, surgery is a fine option. Many on the site have had it, including myself. Your thyroid labs are within range now. Before you have surgery, you take potassium iodide drops for several days, to decrease the size of the thyroid gland, and decrease the vascularity.
I suggest you make an appointment with a surgeon who does many thyroidectomies. From your post, I do understand the issue with the ATD, but I am super puzzled why he says surgery is not an option. Because right now, you are not hyper.
******The best person to read on this is adenure, Alexis, for her situation is the EXACT SAME as yours. Intolerance to ATD’s, elevated liver labs. She is breast feeding. She did not want to quit. She did decide to have the surgery, and you can read her entire though process, plus sending her a PM to learn even more.I completely understand your desire to keep breast feeding, and after you read the posts by Alexis, she will tell you so much more. She ruled out RAI cause she did want to continue to breast feed,
I am much older than you, but WHEN I had Graves’ I was breast feeding a 6 month old boy, had the surgery, continued to breast feed for a couple of years. It can be done.I would also check with Alexis about PTU, I cannot recall if she did/did not try it. The liver labs go back to normal fairly quickly, and your WBC will go up fairly quickly. And check all I’m saying out with your docs,
But, I encourage you to say, “I do want to explore the pros and cons of surgery, and I do want to continue to breast feed.
Happy reading, and I wish you the best, keep writing
Shirleyin reply to: symptoms all over the place #1173944Pester them for your labs. Have a talk with your doctors. ATD’s may or may not be the choice for you, but in any case, there are many serious health implications for you, including feeling terrible, if you are hyperactive, and have untreated Graves. Discuss with them if you should continue with ATD’s (i realize you are off them now) or you should consider RAI or surgery.
Shirley -
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