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in reply to: The Shakes #1171358

Hey Gina!
I am sorry that you do not have a compassionate and professional endo. but it looks like you have no other choices. And you DO need one.
You also need ATD’s. You really do. There really is no choice for this.

I am not sure what your allergies are. As an RN who has taken histories of hundreds of patients, and given tons of drugs, I can tell you that about 90% of people who say they have allergies, really do not. When I ask what they mean, usually it is nausea, constipation, GI upset. Sometimes people have itching and/or a slight rash. That should be noted and respected. And of course, when there is swelling in the throat or difficulty breathing, that is a medical emergency. If you need to be watched for an hour by a medical professional after you begin a drug, you may have a true allergy. If this is the case, please wear an allergy bracelet.

But it does not preclude taking a drug you really need to have. To consider which route to go, you begin (we all begin) by taking ATD’s. Then you will know if you can tolerate it, and I hope you can. You will need a GOOD RELATIONSHIP with your endo, providing accurate information about how you are feeling. He may need to adjust the dose up or down. And draw labs.
I know you are sick of doctors. But you are beginning a long relationship with doctors, to get well. REally. None of us like this, many, like me, think it is very unfair. But stuff happens. I really am sorry.

There are bunch of meds that can cause serious liver problems. With ATD’s, the instance is so rare. And you don’t suddenly need a liver transplant.
If your liver function labs increase over time, then the drug will be stopped.
You will be safe.

I think Bobbi’s advice is very good. Consider her suggestion, if the reason you are reluctant to begin treatment has anything to do with the fact that you do not like the doctor. Perhaps you should have one appointment with the endo in your town. I am guessing, but do not know, the visit will be between $180-280. That is based on the high end. Perhaps you can see this doc, then have your labs and most follow up care done by your GP. Or even the endo that your insurance does cover. You can say that the transportation is a problem for the out of town one. I don’t know, I am just throwing ideas out for you to consider.

Another view is that the endo you are going to, is just fine. Graves’ is new to you. Sounds like he gave you information about the three options, that you refused to take the ATD;s but are taking the beta blocker.
But you need to be on the ATD;s. You Graves’, like all of us do. Gotta be treated so you can move on with your life.

Coffee? If it is strongly associated with smoking, maybe you should give it up. But I understand why you enjoy your coffee in the morning.

Smoking? Yes, TED is much more frequent and more severe. Not to mention all the other stuff you already know about smoking. Maybe he laid out too much information for you at the first visit, but it sounds like he was trying to have you realize that you were sick.
Do write again. There is a lot of support here, and it is not a drama website, but people helping people, with skilled facilitators helping us.
Shirley

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in reply to: Fact or Fiction???? #1171324

Talk to the surgeon. He/she is the person to discuss it with you. I think you will feel very reassured and much more informed.
Shirley

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in reply to: Is it bad to drink coffee #1171379

Hi Alexis. Have your coffee. Enjoy every drop. Be sure it is worthy of you, and very, very good, just the way you like it. If there is a special day now and then when you want a second cup……enjoy that one too!
My two cents.
Shirley

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in reply to: What about thyroidectomy? #1171286

If you have not read the featured artucle Kimberly mentioned, catstuart, I encourage you to read it.
With any surgical procedure, a list of risks are presented, as I am sure you probably know. I chose the surgery, wanted it and was happy with my choice.

I imagine the surgeon emmtee mentioned, who told her it would would be “harder” (my quotes) was probably not comfortable doing thyroidectomies, or simply did not want to do it. Having a small gland is not the criteria for doing it, and having a larger gland does not mean you will have a harder time. If you talk to a surgeon, you will be discussing all that is involved, and you can ask that specific question. The preparation before surgery talking the potassium iodide drops, decreases all mucous drainage, and decreases the vascularity, thos the size, of the thyroid. Main thing is it find the surgeon who does a lot of them. They are not as common as appendectomies and hysterectomies, which are way more frequent.
Shirley

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in reply to: Facial nerve damage due to Orbital decompression #1171315

If you can do it, I suggest having another surgeon examine you. Sadly, though, from what the doc who did the surgery said, I imagine it is a complication of the OD. I had one, too, could not close my eye after OD. Still can’t. Surgeons tend to avoid us when we are not their poster patients. They are not fond of poor or even any outcome that is problematic..that has been, and is presently, my experience.
But, for your eyes, I hope you will find an opthalmologist or neuro eye doc to examine your eyes. I have the same eye issues at night in both eyes that you are having. I have to tape my eyes closed. It sounds awful and it is.
Shirley

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in reply to: Fact or Fiction???? #1171319

Hi, glad you found this site.
Think I will jump to your questions first.
1. I am thinking the option of staying on methiamazole was not presented to you because the endo had no reason at all to conclude tha the drug has helped you return to a euthyroid (normal) state. That choice is more of an option when there is solid evidence that this has occurred. In your case, there is no way for the endo or you to have seen this improvement. Probably because the drug was not taken consistently, so neither you or he had any chance at all of determining how it was or wasnt making any difference.

When you began your higher dose, has it made a positive difference in how you feel? Did the endo ask you to check in to report how you were feeling? I can’t tell from your post if you felt much better on the higher dose for four months, or even back to normal, or if you continued to have hyper symptoms or if you began to feel hyPO. So all of this information is critical for you and the doc to work together with. I am not sure if you want this option, but if you are serious, then tell the endo that. And really, if you have skipped doses at all, no doc anywhere can help you toward your goal of feeling good again.

This is a real good tome to wrap your mind around the fact that you will most likely be taking meds and having labs the rest of your life with graves.

Or, as Bobbi said, maybe the drug is not working for you. PTU is the other option and I am not why you have said your comment about WBCells. What do you mean, do you always have a dangerously low WBC? Or is this something you read about? With both ATD’s there is a minimal cause for concern with that, but it is true for both ATD’s, and you have already been on one for four months. Did the endo ask you to come in for labs during the 4 months? Just asking.

From what you say, it seems that you prefer to have the surgical option.
2. It is preferable, and generally pretty easy with ATD’s to reduce the amount of thyroxin and get people back to a better state. Frequently, not always, not at all, the gland may reduce in size. there ARE FOLKS WHO ARE resistant to ATD’s who have thyroidectomies. But you need to be treated appropriately, with this in mind, by the surgeon befor the surgery. As Bobbi mentioned there is more risk, but it can be managed quite well by the meds you take befor the surgery. We ar fellow patients here, so my comments are directed to you so you will meet with a surgeon. I suggest that you ask for a referral to a surgeon who is known for doing a lot of thyroidectomies, and kearn about the preparation, pros and cons of surgery. The preparation consists of taking some drops before surgery to reduce the vascularity, the size of the gland.
I had surgery. The endo you are going to is not the best resource for you to discuss the surgical option. The surgeon is. It sounds like the endo has concerns about you being compliant after the first go around when you weren’t taking the medicine. Now you realize how you really have no choice in this matter.
Final word, which I know you know by now. You Have to take meds, most likely you will take them the rest of your lfe, and thyroid hormone is essential for life

Next thought. Not sure why the doc called your mom. You may have listed her as an emergency contact. When the doc checked to see if you had picked up your meds (probably he was really concerned about you, and more so because you had been non compliant in the past, maybe that is why he called your mom. Being hyperthyroid can kill you if untreated.
3. I suggest you walk in to a pharmacy to ask them if Cymbata really interferes with the metabolism of methiamazole. Who told you? I want to be sure this is correct, for it sounds like it j
Has helped you with your joint pain. And if it is really a contraindications to take theo two drugs together, it is not worth considering the ATD option which you do not seem interested in, and have no way at this point to have any evidence that atds are helping you.
4. Not sure, but as Bobbi says in her very helpful post to you, you may be having an allergic reaction to the ATD.

I’d like to say in a general way, that I am very sorry you have graves. None of us like it and it has been varying times of stress and hell for all of us. But you can get better. With two small ones a full time job and a new marriage, plus graves, this is very hard. It is almost impossible for other people to understand the disease(and you have quite a way to go and a lot to learn). It helps to imagin yourself back before you had ever heard of graves, and realize if your friend had it, you would have no understanding of it either.
Shirley

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in reply to: What about thyroidectomy? #1171283

Thank you, Kimberly, I intended to include that in my post last night.

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in reply to: Possible relapse but bloods only just off #1170937

Hi B,
I am so sorry you had this experience with your doc, it is compounded by the fact that you don’t feel well. Of course o agree with the other posters who have written. You know yourself, your body. All the more reason to regard this as a chance to have a better and more compassionate endo on your life. I am sorr, too, for th hassle of trying to find another doc. That takes time, and more time to figure out if it is a right fit for you. The best to you, I hope you do not have to wait too many months for an appt. a cooperative GP or anyk other doc who knows you well could speed up the process with a phone. All, perhaps.

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in reply to: Fast RAI results – Need Advice about Dr #1171288

Nancy,,,,!!!!
1. No, not at all! You are reasonable and you are correct with your concern
2. Maybe yes, consider seeing another endo. If you like this one, have a VERY FRANK discussion about this experience. You need to be heard with a concerned response. This super bad office stuff, and it takes a second to pull up the results on the computer. Wait till you return from Hawaii.

3. I suggest you ask your GP to write an RX for you if you dont hear from the endo If you do not have a satisfactory and concerned response by tomorrow,
Call the gp before he leaves tomorrow Friday ask to hane him her call it in to pharmacy for you.

I agree with you about your concerns (sure you are hypo. It is as hard as being hyper.). Of course we are not doctors, have to say that.

Kidney stone…..did you pass it or did they “fix” it by blasting it?

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in reply to: What about thyroidectomy? #1171281

Hi catstuart,
I chose a thyroidectomy for the very reason you mentioned. Check out the search engine using that word, plus the word surgery. It has been a while, I think it was lch11 or lhc11 who did such a nice narration of her experience. I loved my experience.

Adenure, I don’t want to offend your friend, but her comment is unfounded and pretty silly. You could say that about every part of the body. As someone who has personally scrubbed for surgeries in general, cardiac and neurological surgery, I can assure you that all surgical sites are as complex as the people who have them. We all want optimal skills and abilities in a surgeon who is going to operat on us.

To respond to your question, catstuart, a decision on what treatment path to choose, it is a combination of geography, your doc’s presentation, what is available in your area, and your thoughts of pros and cons of one treatment over another for you. The surgeon who spoke at the San Diego conference said that we should find one who does at least 50 thyroidectomies a year.
Generally it is near a larger medical center. It is the same with any surgery. Not all eye surgeons do cataract surgery, most surgeons a usually known for the procedures they do and are known for. In my case RAI was fairly new at that time, but a much more compelling reason for me was that I wanted the fastest way possible away from the hell of Graves. It is my recommendation that you try to find one or two docs in your area who meeet the criteria I mentioned, talk with them about the surgical considerations, and incidence of any complications that could occur, how they would be treated if they did occur.

In conclusion, I think most people are the happiest with their choice when they participate in the process, and feel fully informed. The personal reasons are all over the map. Totally based on the person, their life. Several women on the forum did not choose or want RAI solely because they did not want to wait that long to get pregnant. A couple of the facilitators chose ATD’s. Others chose RAI.
Best wishes to you in your decision
Sirley

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in reply to: New to Graves – struggling with decision – drugs or RAI #1171105

If you waited to let your thyroid burn out, you could really destroy your health. Or die.
If you have been told that by docs, as them what they mean, and if they recommend that to patients. I suppose if you want to do that, you could discuss it with the docs, you would need to be watched very carefully, with lots of labs and reports on how you are doing. I really don’t know at all, but discuss it thoroughly.. Not sure what you mean. To continue on ATd’s or just do nothing because your symptoms are mild? Definitely doc question and consultation. probably with a 2nd opinion.
Shirley

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in reply to: In a rush? #1169582

I am not a doctor, but if you think about it, having thyroid hormone dose decided by kgm/mcg ratio. It does not make a bit of sense to me AT ALL. From my view, it is labs and how you feel. Check it out with your endo.
Also, I would encourage you to do with your life style and and exercise, and everything else…DO WHAT YOU WANT TO DO. Be you again, that is what all of this is about!
TSH 18 reminds me of being hypo, but let’s see what you are, how you are feeling with next set of labs.
You have come a long way! 18 months later, I am not sure RAI is very relevant regarding much of anything. Now, it is a matter of finding the sweet spot, as Kimberly and Bobbi say, and get on with your life! Check it all out with you doc, but that is my two cents.
Shirley

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in reply to: Severe menstrual cycle – doc says means pills are working – huh? #1171191

Hi Darcy, glad you have an app’t with OB doc too.
I know how you feel right now. Your comment about not enough energy to fold laundry brought back a LOT of memories. But it also prompts me to wonder if you are hyPO, not hyper. As Bobbi mentioned in her post, the periods you describe fit more with hypo. So does the total lack of energy.
If you are not doing this now, do the appropriate signing of release forms to get copies of your labs and visits to your doc. If possible, and it is not done now, try to make arrangements to get your labs done before your visit.
Be sure you endo knows all of your symptoms, and ask questions.
During this phase of treatment, the labs and symptoms are super important, for you can go from hyPER to hyPO, with the ATD’s, until you get the right amount for you.
Shirley

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in reply to: New to Graves – struggling with decision – drugs or RAI #1171092

As you have already learned, all three options there for us, and all have pros and cons, both medical and personal. I had surgery, super happy with my decision. Think I have posts about my experience if you search for them.
Shirley

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in reply to: graves and other organs affected #1074272

To buttamama-Tachycardia (tachy means fast)A fast heart rate (classified as over 100 bpm (beats per minute,) is not a good thing. Heart rates of 150+ are life threatening over a period of time (and they usually get faster, cause something is big time wrong._To have a fast heart rate over a long period of time is really hard on a heart.
But for a simple explanation, the ventricles are designed to beat in humans between around 60-80 bpm. This can be affected by exercise, and the rate may be slower. The heart is run by electrical impulses, and maybe the best way to think of it, to think of an overload circuit breaker, and all the damage it can cause.
There are a ton of different kinds of tachycardia, but it requires more of a fund of knowledge that is needed. If you take a CPR class, or probably an advanced cardiac life support class, you’d learn about ventricular tachcardia, ventricular .fibrillation, and much more. V-tach is a fatal rhythm if not treated.
Kimberly’s post on this is very good.
To Phyllis-well, there are a whole lot of people who have kidney stones who don’t have Graves’, I can assure you of that! Good question for your doc, but I think there is no relationship.
I worked on urology for years. BUT, I am sure sorry you have them, and the pain that can be experienced with them is known as one of the worst pain there is (along with several others.) I hope you get that situation resolved.
Shirley

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