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Gosh, I am sorry you do not feel well now. You have done a lot of things, so it is difficult for any doctor to figure out why you feel the way you do.
Re the diagnosis of diabetes you mentioned, are you sure this diagnosis is following you around? I ask this, because you really need to understand why this was said. If your blood sugars are CONSISTENTLY high, I encourage you to go to check this out. There are all levels of diabetes. I hate to have you ignore this. Please discuss this with the next end or MD you find. Or, perhaps you had a high blood sugar the day you saw that doc, then subsequently changed your diet (which is what diabetics do) and now your blood sugars are normal!
If you look at the definition of adrenal fatigue, you will find that this was a term developed in the 1980’s by a chiropractor. This is not an accepted term or diagnosis. I encourage you to go to an internal medicine doc after you move, or before, to get this clarified. There is a condition called Addisions disease, which is a whole different differential diagnosis. There are also proven diagnostic tests for Lyme and Bartonella.
For your interest:
https://en.wikipedia.org/wiki/Adrenal_fatigueSeems like you have been sidetracked by a lot of different diagnoses.
I encourage you to find an internal medicine doc or endocrinologist. It is quite a global statement to say that you don’t trust them anymore.
You deserve to have answers to your concerns, but you also need to provide a good history as a beginning. If you are not happy with the first doctor you select, get a 2nd opinion. You are in the Atlanta area, and there is a fine medical community there. I suggest Emory University.
Also, before you move, get either hard or electronic copies of your medical history to provide for your personal file, and the new docs you go to. They will ask for this information when you go as a new patient.
Re the comment of Liz re TT (yours) and TT that Liz had. Get a copy of the operative report and the path report. Most likely you had a TOTAL thyroidectomy, cause that is all they do now.Historically, a long time ago, surgeons used to leave a small amount of thyroid hormone, but for the past many decades, a total thyroidectomy is done. This has been the standard of practice for many years.
Alternative medicine definitely has its place, along with acupuncture. But an MD, preferably an endocrinologist, until you are stable, is the path I suggest you chose with your move. Each has a totally different education pathway, and none equate with each other. Some roles can complement each other.
Alternative medicine definitely has its place, along with acupuncture. But encourage you to find an MD at Emory University.
in reply to: Levothyroxine after Completion Thyroidectomy #1184213Hi newbie, I know you have felt awful for a long time. Most of what Liz has said, reflects my experience.
One (well, two) decisions I have made, and I am not saying it is “right,” and it would never be advised…
1. I don’t give much of any thought about waiting to eat or have coffee after I take my Synthroid in the morning. But I AM consistent. I do the same thing all the time. Meaning, I wait only until the coffee is made, then I am drinking it first thing in the morning.2. I eat when I want to eat. Generally, I do not eat right away in the morning(now that I don’t have to bolt out of the house at 6am to go to work!)
My experience with other stuff.
3. The comment Liz made about taking Synthroid and labs is interesting. I read several references, and the peak effect of levothyroxine is impacted by several variables-including age, and, as she mentioned, also if you did/did not (and we should separate most supplements at least 4 hours from taking our levothyroxine. and we should separate them by at least 4 hours. I usually take whatever supplement I take later in the day at random times.
4. I have always been impatient about labs, I want them sooner rather than later. It really IS in our best interest to wait at least 8 weeks. I find this very hard to do, especially when i have decided I needed more or less hormone cause of the way I feel. I pretty much get my lab without considering much of anything except how busy the lab is. Mondays seem to be the busiest.
Although Graves’ was hard, and I was sure I was a crazy, insane person for a period of time, looking back, it was a cakewalk compared to TED..for me.
I think you are VERY CLOSE to the place and dose where you actually will be encouraged, feel good, and remind yourself of the “old you.” You really will get there. And it sure does take too long to get there. Once you are there, you might be stable for years and years. It takes way too long to get the dose just right, but it does happen. I think you are about there! Keep writing.
Here’s a reference with quite a bit of info in it, but might be worth knowing about. From the Univ of Baltimore. Re levothyroxine.
in reply to: Well, here goes! #1173727Hi, AzGravesGuy!
What a blast from the past~ So nice to have you check in!I relate to your anniversary date! But mine was sooooooo long ago!
Good to bag the brain scan for now. Your decision. You can always make a different decision, about that or anything else! How empowering!
I remain on Synthroid, always a bit of a tinker with the dose. My body wants more but my cardiologist wonders about it. I have too many “parts!”
Shirley
in reply to: Strabismus surgery…. #1184101I know I have said it before, but strabismus surgery a piece of cake! Really.
My OD was very difficult.After strabismus surgery, I went out for lunch, and walked a mile with a friend.
Shirleyin reply to: On ATD two years-plus? #1183769Aw shucks, gee! Thank you, Flora, for such nice thoughts. One of the very best aspects of this forum, is that the newbies, like Physchik, and the old timer Graves’ folks, like us, will continue to “be there” for each other. There is no expiration date. I am always so thrilled when some of the very long ago people decide to return to the forum. Their updates are helpful, encouraging and show that our long time relationship with each other and Graves’ are some of the best of the best!
PhysChik. Yes, you will be a liveline to future users on this site. They will be lucky to have you! You are even helpful at this time, at the beginning of your Graves’. Someone else will read that, and realize that they are not alone. Knowing that you are not alone, is one of the most empowering knowledge you can have at the beginning of this difficult road we travel.
Keep plugging away, ask for what you need. It really is amazing that when we begin to BELIEVE, for the first time, then see a slight result, that there is a chance to move through Grave’s, and return to a familiar baseline. All of this is difficult, remember always that we were as overwhelmed and discouraged as you were when you got your diagnosis. When you have a moment, take a look some of the beginning posts!! You’ll see!
Shirleyin reply to: On ATD two years-plus? #1183766Hi, long time friend Flora! I am trying to recall when you first posted!
You sure do have a good doc. My experience after my sub total thyroidecotmy is exactly what you described. Euthyroid for many years, then slid to hypo, now taking Synthroid. Happy. Labs always indicate that I need a little less Synthroid, but I cannot function with less. Labs indicate I am a bit hyper, but everything else about me (sluggish, sleepy, weight gain, and all other hypo symptoms) are hypo. I have to have a life! Right now I am on 100 mcg. 6 days a week, and 112 mug one day a week. Going to call the endo to say that I’d like to go back up to 112mcg two days a week, see what difference that makes. I always wait at least 2 months between a dose change. Glad things are going well for you.
Shirleyin reply to: Terrified of Graves #1184150Hi Physchic,
You have come a long way since your first post! Yah! Yay! I totally
“get” why you would like to get the biopsy. So, even though you are in doc and insurance transition, hang out that need, say that you want the biopsy asap. That is what you can tell the new doc, the surgeon, (optimally, schedule to have done when you see him/her. ) The barrier you might meet, is that the doc will want to see you first. Your PCP could order it, but a surgeon is the person to do it! And that is probably good medicine. The only issue I see with this, is that it usually has to be scheduled, with the right staff, and that might be challenging for you to Cause that is what you do want! (: The more information you have, the less anxiety you will have about the information you DON’T have! A biopsy is nothing.I had my thyroidectomy while I was still toxic (other hame for hyperthroidism is thyroid toxicosis, which was used when I had my surgery in 1959. I THINK it was 1959, I’ll have to check to see what I wrote below!
**Another brilliant suggestion. Call the surgeon’s office this Monday, tell them to call you with any cancellations that are earlier than your appointment. it happens all the time!!!!!!
Shirley
in reply to: Blood type #1184171No idea. Have never heard that.
It would be helpful to know your references, and if they are evidence based studies, with a large longitudinal study, with a sizable population, with all the strict protocols that are required for good research.It would begin with someone asking the question. Why would they ask the question? Very thought provoking.
Shirley
in reply to: Terrified of Graves #1184148Agree with Liz. If you have been told you will eventually have a remission, that troubles me. All her advice is excellent.
shirleyHarpy!!! SO NICE to hear from an old friend! I am so glad she is doing so well.
Do you think her fasting glucose is better because you have changed your diet, eaten many fewer carbs? Just a thought. I have not done there research, but I have never heard of blood sugar having anything to do with Graves’. Send some evidence based references to make me happy, ok?
Shirleyin reply to: Terrified of Graves #1184145Hey Physchic!
Where did this two years come from?? You don’t have to wait two years for anything. My experience pretty much reflect the experience of Liz. Wanted to get this DONE, get it behind me, and MOVE ON! Sooner the better.
Kimberly has had great success with methimazole over several years, so you can ask her about that. Keep writing. the methimazole will kick in soon, and it really does make a difference in how you view stuff.
Remember, a pill a day puts you back in the normal population, and you are “you ” again.None of us are disregarding any of your apprehensions or fears. Certainly none of wanted to mess around with this Graves’s stuff. But, I am pragmatic, not much of a person into denial. “What is, is! Get on with it!” is more my thinking.
Of interest, I have had breast cancer twice with no family history, two mastectomies, radiation and chemo because of the degree of cancer the 2nd time, which developed in 8 weeks. It happens! Carpe diem, whatever junk is handed to us! I am so grateful for all the interventions I have had.
in reply to: Terrified of Graves #1184139Oh my. I am not sure at this point if I tell you that I was a crazy person, that I could have written your letter below. I had a small baby, working full time in a hospital, with a husband in med school.
You are very, very lucky, to go to a doc who recognized this, did all the labs the first time, and you did not encounter someone think of Graves’ right away. Getting a quick diagnosis is a gift.
Clearly you have done some research on all of this. But when you are hyper, we really are a little bit crazy, with all that you describe below. After a few days, as you take methimazole, you will not be so hyper, and as that evolves, you will be able to look at this situation a little bit more objectively. The methimazole will work. You need the beta blocker right now, cause hearts are not fond of beating that fast. When you are less hyper, your heart rate will most likely slow down. And, work will be be better. The sooner you have a plan, I imagine you will feel that something is being done, and there is an end to this. As far as not being yourself, and being you again, this is true. You will get back to baseline.
I understand your fears, but in just a few days, you will see that methimazole is your friend, and be darn glad someone developed it. Incidentally, I have no family history. Not sure if you do or not.
What helped me, was that even many decades ago, when I was diagnosed with Graves’ at age 24, I knew (from reading) that I would be better. But I really did not believe it. I was angry, irritable, ate like a pig, all the time, and lost weight. People did not understand, and I did not really understand either. Graves’ and feeling like this was for OTHER people. NOT me. I was would up so tight, not fun to work with, but quite a plus for my co-workers, for I wanted to do all the work. My work, their work, everyone’s work. I was awake most of the night.
I also had a nodule. Back then, in the 1950’s there was no internet. I read Cecil’s Medicine. Since you are really worried about it that is a reason to ask for a fine needle biopsy, you will have more information. I think the unknown is the hardest for me. But some people don’t want to know anything. I suspect you are not one of those people!
Since I am one of those instant gratification people in certain instances, I could hardly WAIT to have my thyroidectomy. It was a definitive act, and removed what was giving me this problem. I was impatient and unreasonable about having to wait until I was less hyper. Back when I had my surgery, the method was to leave a tiny bit of thyroid gland, with the anticipation that would be just the right amount for the body. This worked for me for over 30 years. Then I became a little bit hypo, tired sluggish, gained weight, felt like a slug all the time. IT was time for thyroid replacement. Again, how lucky we are that thyroid replacement with levothyroxine can be done! I have been on Synthroid for years. All good.
In passing, I want to mention that i was breast feeding, never did stop. My neighbor brought my baby to the hospital for me to feed, and I spent the rest of my time expressing milk by hand. No pumps then.
If you have a prior history and diagnosis of panic attacks, I presume your care provider knows this. There are some choices of meds to take when you are in a full blown panic attack. Otherwise, probably your anxiety is understandably about this new diagnosis and how you feel. It will be better.
I do not know of anyone who developed mental issues caused by Graves’.
Your docs are doing the right thing. Managing the symptoms is what needs to be done. We sure has heck don’t want to continue to feel like that.
As Kimberly says, some people choose RAI, some choose surgery, and now, some people also choose to stay on methimazole. We are all on the forum.
Choice is dictated by personal choice, plus if you decide to have a thyroidectomy, you need to have access to a skilled surgeon, who does a lot of them. My understanding is 50 or more a year is a good measuring stick.Please continue to write. Lots of people here do understand what you’re going through, and may have thoughts and suggestions that I have not mentioned.
Shirley
Hey, gatorgirly! So glad you hopped on so that you can jump in with your help. I am still checking this site at least once a week, and sometimes on a roll, and every day for a while..like this week!
Shirleyin reply to: Breastfeeding while hyperthyroid #1184076I also breast fed my baby when hyper and on meds.
My only thought about local breast feeding support, as goldenwillow mentioned,
is that it sound like breastfeeding is going along well for you. If it is not, then maybe so. But with the medical advice you are having, and the fact that another typical breastfeeding mom will not have a clue at all about your other issues, I do not advise that. Unless, as I said, you want breastfeeding support ONLY. But I would not confound that issue with the rest of your medical history. They would not understand. You are getting super good care and advice.
Shirleyin reply to: Graves Disease Surgery TT #1184132Since we are not docs, you can ask them. But I had two more children, by choice, after my thyroidectomy. I think getting pregnant is unrelated, except to be sure you are euthyroid, neither hypo or hyper.
Shirley
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