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in reply to: hyper to hypo #1063773
Welcome to this wonderful site.
In my view, this is the best and most reliable resource on the web for discussing Graves with others who have had it, and for accurate information from the facilitators.
I imagine that in your reading, you have also learned that Graves’ is a medical situation where the thyroid gland begins to circulate too much thyroxin, and that puts your whole body in "fast-drive," represented by the symptoms you have been experiencing. Graves’ is definitely not a healthy way to lose weight, that is for sure. DO NOT decide to change the dose of methiamazole yourself. You are being treated properly, by going back for labs, and based on the labs and how you are feeling, the endocrinologist needs to make that call. Same with the propanolol.
At this stage of Graves’, you need to be monitered frequently with the labs. Graves’ is a medical condition that CAN be serious and even life threatening, if not treated with drugs to get you out of the hyperthyroid state, managed carefully by the docs and with ADT’s and a drug to slow down your heart rate.
At some point down the road, you will have the three options that you are aware of, RAI, surgery or continuing with ADT’s.
But we can’t fix this disease without the help I have mentioned above.
I am sure you will hear from the facilitators, but managing Graves’ by yourself is not an option. It is not safe for you.
You have a good goal of decreasing stress in your life when you can. THere are a lot of steps you need to take to empower yourself about Graves’ and the treatments available to you. I am sorry, but the book by the lady who cured herself with colors, is not a very good resource for getting on the road to health after a diagnosis of Graves.
All of us on this site have had Graves’, I think you will learn a lot by reading some of the other posts. You WIll feel good again!
I know you will be hearing from others in the near future.
Shirley
(Graves’ for 50 years, controlled with thyroid replacement after surgery (which I chose to have.)Hi Krystal,
Welcome to the hyper club that none of us wanted to belong to!
I think you may want to read the very fine post by James every day for a while! It is very descriptive of "how it goes" when you first begin with your ATD’s (antithyroid drug, in your case, methiamazole) And it is reassuring.If you want to read ahead on the treatment options now, go to the search option, and type in "surgery," RAI" etc. You will find that there are several recent long discussions about making a selection. The biggest thought for you to remember, always, that it is your choice. Most people who weigh everything, including their preference, feel content with their choice. You can read their "decision trees," and begin to get a feel for what you want. To summarize, our decisions are all over the map of the three choices. I chose surgery, because I did not want RAI, and did not want to count on the ADTs. The people who chose ADT’s probably would not have considered RAI and surgery. The people who chose RAI probably did not want to do surgery or ADT’s.
So, believe me, there is not single answer.As James said, it is MUCH easier to think about ANYTHING after you are not so darn hyper. We definitely are not ourselves when we are hyper. It’s awful. So if it seems too much right now, just realize you will feel much, much better after the ATD drug begins to put a halt to the excess thyroid hormone racing around, which is making havok of your life. I DO understand!
ShirleyHi Sarah, did you take the appt for three weeks? Your really need to be seen for regular care, as you know. I suggest, also that you give them your name for any cancellations that come up. The reason that you have to wait for an appt that long, is not only that they are busy, but much more time is scheduled for new patient appointments with an endocrinologist. Is this with an endo? What is your heart rate now? Were you able to get your labs so you have them? How are you feeling? Has anyone asked you to return for lab after you have been on the diuretic?
I am hoping that you can get established with an endo as soon as possible. If your heart is really racing, as I described in my previous post, that is a worrisome thing.
Write with more info about how you are feeling…
ShirleySarah, as Kimberly said, I do think you should call your doctor tomorrow for a couple reasons. She discussed atenolol, why we take it, and I would like to add a little conversation so you can understand a bit more about what is going on.
First, it helps to know that atenolol relaxes the blood vessels, thus slowing the heart rate, which is why it is prescribed. It is specifically prescribed to slow a very fast heart rate, which, if it is present, is serious. It is bad for the body to be so revved up that the heart rate is very fast, 120-200 is FAST! However, when you begin to take it, it is very possible that the dose and/or frequency might need to be adjusted up or down. Sounds like you initial dose slowed your heart rate TOO MUCH. If you heart rate is that slow, then you might feel dizzy, generally not ok. There is another variable that can help you if you ever have that slow a heart rate again. IF you have not been drinking fluids, or enough water, your blood volume is depleted, so drink a couple glasses of water.
I would like to think that this was all explained to you by the doctor who prescribed atenolol, or the pharmacist when you picked up the drug, since it was a new drug. Now I am concerned that you are not taking the drug at all, and you need to be aware of your heart rate, for it may go right up to racing again. I am also concerned that you are supposed to be on bedrest for four days. Is that what the ER docs said to do? Or your doctor? ARe you feeling pretty good now? I suggest that you call whomever told you to be on bedrest, and ask for clarification on that. Of course it is difficult with small children.Finally, it is always a good idea to understand the thinking behind why you are prescribed a drug you have never had before.
You did mention water retention. That is not a typical symptom associated with Graves’, but as you have already learned from this site, we are not medical professionals. This is a good time to follow Kimberly’s advice regarding your health."When it comes to our health, it definitely pays to be the “squeaky wheel” and make sure that our doctors’ offices are on top of things. Unfortunately, sometimes we need to fight for ouselves to get appropriate treatment."
So this is the beginning of you taking an active part in your heath care. With that in mind, I strongly encourage you to go to an endocrinologist who treats Graves’ patients. NOt sure where you live, but hope this is possible. This is a long road, and at this time you really probably do need to be seen by an endocrinologist.
Kimberly mentioned another point, and that is if you have Graves’, almost without exception, an antithyroid drug is prescribed, and this has not been prescribed for you.I know that this is a tough time for you right now, sitting in bed, wondering what is going on, and all of us are here to help with our experiences. Keep writing, keep track of how you are feeling, definitely take your pulse now and then, take your blood pressure if you have a cuff at home. Do you think your doc will refer you to an endo? It is fine to make an appointment on your own, but frequently they need a referral. This a perfect time for you to begin to keep track of ALL medical records. You will need to sign a form from wherever they are. Get a copy of your labs, then call the endo.
There are two websites for you to explore, to find a qualified one for Graves’ in your area.
I will count on one of the faciltators to send them along, for I can never remember then when I am trying to give them to someone.
Best, ShirleyWith this in mind, look at the home page of this site, read some of the information that is posted there about Graves’.
in reply to: EYE MUSCLE (STRABISMUS) surgery-Day 2 #1063916If you would like to speak with a man in Chicago who has had TED, all the procedures, let me know. I will send a PM to you, give you the info.
Shirleyin reply to: How long does this take? #1063815Hi Joy, I agree with everything Ski said in her great response to you. Certainly, there is an option other than suddenly stopping the ADT’s, and/or trying a smaller dose. Keeping track of how you re feeling, reporting to endo, relatively frequent labs, especially when the goal is to get you to a place where you do not feel so sick because of having (either) too many or too few thyroid hormones on board-will help you move though this time with the best chance of beginning to feel better again.
When hyper, it is HARD to feel rational and objective about ANYTHING, because of all the effects we feel when we have too much thyroid hormone running around. So as Ski says, when you reach the goal of being neither hypo or hyper, everything is easier for YOU to think about.
I cannot emphasize strongly enough how important it is for you to really believe you are doing what you choose to do when you decide on a treatment plan. It is not uncommon in many health situations when a family member has a strong opinion which may differ with the person making a health care decision. My own experience in this situation is a fairly typical one. I had breast cancer, I definitely wanted a mastectomy, my husband did not want me to have one, he wanted me to "save my breast."
From my view, saving my breast, was saving the ENEMY!!! I could not bear to keep my enemy. In the end, I had the surgery.
The most stressful part for me was the pressure to do what someone else thought I OUGHT to do for their reasons. I felt SO GOOD about that decision.
This is not an uncommon situation, and to reflect when is frequently stated on this board, the people who have weighted the pros and cons for THEMSELVES, weighing in the objective factors, almost always feel content with the decision they made.
Many choose surgery because they did not want RAI, many choose RAI because they did not want surgery. The personal reasons do not have to be rational, necessarily.
I sure hope you feel better soon now that you are taking ADT’s again, remember that how you feel, the labs and the dose all have to be monitered during this time.
(If you go for a 2nd opinion, take copies of labs, and reports of visits to first endo. You will need to sign a medical release of information form if you haven’t already. Good to keep your own records.
Shirleyin reply to: Post-surgery update #1065299HI Sharon! I am sure many people on this site appreciated your comments after your TT. I had a similar recovery, and remain as pleased as you are, many years later.
I just had eye muscle surgery last week, have had TED for almost two years, so if your eyes become an issue for you, and you have TED, feel free to write to me! Been there, doing that!
ShirleyAgree with all comments.
To Cynthia-you are a POSTER CHILD for being in the depths in every way only 4-5 months ago. I am SO SO happy for you that you are progressing so nicely, and feeling so so so much better! Try reading your beginning posts! You could barely write, you were so fatigued, and so discouraged!
Shirleyin reply to: EYE MUSCLE (STRABISMUS) surgery-Day 2 #1063914Hi hoochie!
On day 5-6 I felt back to normal, sutures apparently dissolve around this time. Double vision looking straight ahead (was was huge problem for me) is gone. I have a strong habit now to tip my head back to see forward and ahead. I find that if I hold my head in a neutral look-ahead position, without throwing my head back, I can look up quite a bit with no double vision, but if I strain my eyes to look up as high as I can, I still have double vision,and it is not comfortable. I think there is some adjustment period from my end to really believe that there is improvement at all. But there is, and I am grateful. As I look back at what I wrote on post op day 2, my eyes were still very scratchy, and that resolved completely by day 5.
I wish I had been a little bit quieter the days following surgery, used some cold packs more than I did-they felt so good on eyes.
I tried to watch a movie on day 2, and that was too much work for eyes. Dumb thing to do.
Which muscles are most affected for you? Oh yes-I had a general, the entire OR time was only 40 minutes for both eyes.
Shirleyin reply to: Has anyone else developed a shellfish allergy? #1063847Hi Michabelle, From my knowledge and experience, there is no relationship. However, since you have a shellfish allergy,
that can be very serious. Here is a reliable link from the Mayo Clinic addressing this subject which might be helpful.in reply to: Allergy to Iodine #1063906Couple comments.
1. I am not sure how anyone, including physicians, can state absolutely that "patients do not have allergic reactions to sodium iodide." That is such a sweeping, conclusive, absolute statement. This implies he knows this as a fact, and I do not know how he could know this. It also infers that this is true for all people in the future. I have written to Dr. Ross, requesting his rationale for saying this. I have no idea if he will respond. It just seems wrong. How can anyone make a this statement? I am not sure this statement can ever be made, even with numerous randomized studies, with large samples of large populations. He is not an allergist and he is not a pharmacist.
2. Because of buttamamas’s experience, the only safe thing for her to do are the things she has already concluded.
-she had a severe reaction after the scan. She will be careful to report it.
-she should always state this and write this in any medical history, and in any radiology setting.
-the article is not sufficient reference for her to conclude that she does not have an allergy to iodine.
-For her to be safe, she should be sure everyone knows her experience.
-I do appreciate her desire to have scans done in a hospital, although I am not entirely sure that she will be able to achieve this. Indeed, another relevant question is "what KIND of reaction?"so that is what I think, as a layperson.
ShirleyOF note-It is very important for people to realize that there are several modes of receiving a medication.
Inhalation, absorbtion, oral, intravenous, topical. All of this is a complex topic. A drug that is applied topically, is much different that a drug ingested or given directly IV.in reply to: I Need More Conference Info Please #1063869Hi sickeofgraves! I am going, so excited about it! HOpe you decide to come!
Shirley -
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