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in reply to: Side effects of coming off Methimazole #1064685

This is my own experience. Each time my antithyroid drug (I was taking PTU) was discontinued, I reverted to hyperthyroidism pretty darn fast. My heart rate increased, my tremor was back, my appetite increased, my weight decreased.
I was intolerant to heat, always hot, irritable, and had boundless energy, but not the healthy kind of enrgy. So I am someone who the ATD helped as long as I took it, and I never did revert to being euthyroid without the drug. I subsequently had a thyroidectomy, after a round of ATD’s again to become euthyroid. I am not THAT familiar with how long ATD’s are given, but I think the other scenario is that you take them for a while, then stop them, and some people are lucky, remain euthyroid (within normal lab limits, and feeling really good again.)
Maybe you are reverting to your previous hyperthyroid state. Keep track of your symptoms, their changes, and call your endo.
You will probably receive better information than mine from the facilitators. I just told you about my experience.
Good luck, you have a lot of friends here! WElcome.
Shirley

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in reply to: Just found out I have Graves 3 weeks ago – Help #1064775

My last post, guess I did not finish a sentence beginning with "the other docs" when talking about Shiley eye clinic.
I intended to say that the other docs are surgeons that sometimes are needed for TED, but not too often. The neuro-eye doc will you refer you to them if needed. If you have TED, sometimes there is a lot of swelling in the eye orbit, and that can put pressure on the optic nerve, and that is what that doc moniters.

I SURE HOPE YOU CAN FIND A COUPLE MORE NAMES OF ENDOS! AND IT WILL GO FASTER IF YOUR PRIMARY WILL REFER YOU TO ONE BEFORE YOU CALL FOR AN APPT FOR REASONS I stated in my last email

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in reply to: Just found out I have Graves 3 weeks ago – Help #1064774

Hi Jules, I have been washing sheets and linens all day, hanging them on the clothesline because they smell so good!
Just caught your latest post.
1. It is Shiley Eye Clinic, not sure if you had the wroong name, or it was a repeated typo. I suggest you make an appointment with the neuro-ophthamologist. It does sound like you have TED (thyroid eye disease) and the doc can confirm that. The other docs in that clinic)
Now! I think the neuro eye doc would be a great person to refer you to an endocinologist. AND, WHEN YOU CALL FOR THE appt, leave a message that you are looking for an endocrinologist to manage your Graves’. As for a couple names. I am sure the telephone answerer will have to check with the neuro eye doc, or you can simply leave a general question that you would like the names of endocrinologist the recommend.

Whether you need a referral or not, it depends on:
-your insurance
-their practice
These specialties are so so busy, that they do try to screen their patients to ones who really need the help.
-are you having CHEST PAIN? or a fast pulse (representing your pounding chest.) Count your pulse rate. You probably got the metoprol for the fast pulse rate. IT is possible that the dose needs to increased.(I am just chatting, here…)

I think you endo is evil! Like your description. certainly not the person you want a long term relationship with as you struggle with Graves’.
Your primary did the right thing, fine for her to order the labs. It made sense to order the metabolic panel and the CBC but they were ordered to look for any screwy labs that might explain your sore throat. As you know, it is important to moniter platelets and white blood cells when on MMI (methiamazole.) Same with Propylthiouracil (PTU) There is an additional serious side effect of PTU, and you should have liver labs if you are on that drug. Now, I may sound like a doctor, but I simply saying what you should have been told when put on these drugs, and what most people on this site know, and that is the side effects that you should report right away.
ANOTHER REASON to have an established relationship with and endo that is working.

I did quite a ramble, here, so think I will sign off and get the sheets OFF the line!
be ready to be frustrated about waiting for everything. Do whatever you can to get these appts c neuro opth and a different endo.
Do you already know that there are not many endos in your area? Can you ask your primary for another name?
Neither one is needed for Graves’.
QUESTIONS:
1. What meds ARE you taking? I don’t think you have named them.
2. Will your primary refer you to the neuro-op doc at the Shiley eye clinic? Probably would be helpful to you.
3. How are you feeling now? Throat hurt more, less? Temp higher, do you feel worse? Then to the primary i would go.
4. BUT

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in reply to: New to this site. Discovered I have Graves Disease this July #1064705

Read about the San Diego conference in October! Any way you can come? It will be my first time. Shirley

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in reply to: New to this site. Discovered I have Graves Disease this July #1064704

Glad you are here. This is a very reliable site, plus the support means so much, and that you are not alone.
A small point, and I am pretty sure this is correct. Grave’s disease IS hyperthyroidism. They are synonymous terms.
Sounds like you have some good docs on board, a really good start. As you know Tapazole is given to suppress some thyroid production, to get rid of your hyper symptoms, and back to a euthyroid state. You endo will probably suggest RAI (radioactive iodine, to destoy your thyroid, followed by a period when you are still in an up and down state, while your body uses up the thyroid that is stored, then when that happens, you will probably become hypothyroid, and then begin taking a thyroid supplement. YOu will have more labs, and reporting how you re feeling, and sooner or later you will get to a steady state, be euthyroid in how you feel, and reflected by your labs in a normal range. It all takes way too much time, and you can be in a roller coaster thyroid state while all this is accomplished. Pretty much the same with surgery. You will find that some people on this site choose surgery, some chose RAI. Some knew instantly that they wanted (or did not want,) one or the other option. I chose surgery, had a subtotal thyroidectomy. This website lists that as the surgical option, but some of the facilitators has said on this site that it is the practice to do a total thyroidectomy. I would ask the endo and the surgeon that question when/if you get to that point. I think there is a smaller group of people who do not want either option, and choose to continue to take anti-thyroid drugs, as you are doing now, and I know next to nothing of this option, if it really rare, or if it continues to be the choice over a lifetime. There are some contraindications with each of the two antithyroid (ATD) drugs, some of which might indicate stopping the drug.

If you go to the search window, and type "surgery" you will see many posts, and the thought process people went through to reach their individual decision. Same with "RAI."

There is one complication which a few of us get, called Thyroid Eye Disease, or TED. I have TED right now, and it developed decades after I had thyrotixicosis (another name for hyperthyroidism). I took Tapezole, got in normal ranges, then had subtotal thyroidectomy. That would definitely be my choice again. The remaining thyroid tissue took care of me for many years, now I take Synthroid, a thyroid hormone to make up for what my body is not making an adequate amount anymore.

Regarding how I felt when hyper, I had all your symptoms, plus eating all the time and losing weight, being super cold all the time, and being irritable and VERY difficult to live with. Lots of muscle wasting and weakness. Everything about our body is in overdrive. A dangerous place to be for a long period of time.

Best of luck in feeling better fast! It takes a while to get to the place where you feel good. I am sure glad that your thyroid nodule was not malignant. At least, if you have surgery, you have some idea of what to expect in the post op period! I am sure you will hear from many more of us, plus our wonderful facilitators.
Shirley, still dealing with TED, which I am really tired of doing!

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in reply to: New to site and have Question #1064697

Did you have a cardiology work=up when you were there? Did you have an echocardiogram? I would sign a release of medical records form if you do not have one already, ask for the discharge summary, test results, procedure results and labs, from the hospital. That sound say what they ruled in, ruled out and what their impressions were. ARe you familiar with your labs? I am guessing they did do thyroid labs, and they were (as they say) unremarkable, or within normal limits. Seems like they would have given you information if not ok. Seven days is a LONG LONG time to be in a hospital, and leave with no idea of what is wrong or what they thought. Just my thoughts.
Shirley

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in reply to: need web direction for imformation on how the autoimmune #1064729

Cynthia, when we are hyper, it is common to be running 100mph, as Harpy said. It is typical of the disease when we are really hyper. I hope that you begin to feel better, more "like you," when the ADT’s kick in. It is easy to feel totally impatient and frustrated with this stuff. I know I was a nightmare to be around when I was hyper. I could realize that only after I began to feel more like myself as the PTU (propylthiouracil) kicked in. I think I remember from your earlier posts, that you did not feel like "yourself." There are not quick fixes or answers to this disease. I have it, i know, and as you move through this process, you will know, too. There is no one medicine, including L.Carnitine, that is going to make a magic change. Until Harpy wrote, I don’t think it has been mentioned on this site. If you read scientific articles carefully, under recommendations, you will read several paragraphs of "further research is needed." in numerous areas.
Your endo said that she did not feel strongly one way or the other, if this is critical in your mind to take (remember that you are hyper right now, and everything about your body is racing, including your mind, then tell your endocrinologist in a timely manner, and she can research it and prescribe an appropriate dose.
The reference Harpy originally quoted is a good article, done by Italian doctors, in a very respected Endocrine journal. They have some hypothesis, made some observations. The scientific evidence for L.Carnitine is not as solid as, say for example, taking a thyroid supplement when we are hypothyroid. I am wondering if you might be happier if you did not try to read scientific journals for all you information. By all means, read the reference Harpy provided. Print it out, take it to your doc. IT does sound like she is open minded.

As a matter of fact, my granddaughter, who has a seizure disorder as result of having viral encelphalitis as a baby, does take L.Carnitine, because one of the meds she takes indicates that this might help her with bone loss, especially since she is an andolescent. Your mind is racing right now. You asked about finding a surgeon. On this very website, on the home page, there is a little box that says, "find a doctor." It refers to find an endocrinologist, and you already have one, and she sounds like a good one. She is in a good posititon to be aware of surgeons who do thyroidectomies in your area.
Remember, you will not feel this way forever.
I know this is a tough time for you, we have all "been there." Remember, your body is bossing you around right now, big time!!

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in reply to: Prednisone-What to expect? #1064715

hi hoochie, OHHHHH YEAH! I have had multiple experiences with prednisone. Don’t know how much you re taking, but last year, I had two rounds of 60mgm for six weeks, also two separate infususions of Solu Medro , which is methylprednisone(1 gm.) My experience? I HATE the drug, absolutely hate it. The dose is relevant, a little one does not have the side effects a large dose has. 60mgm is large, 2.5mgm is tiny. My adjectives to describe how I feel on Prednisone follow, they get more pronounced the longer I was on the dose. Incidentally, I am sure your doc will do this, but it is critical for you to taper the dose, do exactly what the schedule says, when you begin to go off the drug. Ok, how I felt:

irritable, kinda crazy, antsy, exceedingly hungry, eating everything in site. Much difficulty sleeping, just not "myself."
It is an anti-inflammatory. I had temporary improvement of the swelling, redness, tearing, but it did not help my extreme photophobia (can’t stand the glare of the sun or bright lights, have to wear sunglasses all the time) at all.
I would subject myself to the torture of having skim milk in my morning coffee, rather than 1/2-1/2, rather than have prednisone again!!!! So I guess I have told you how I REALLY FEEL about prednisone!!

One thing concerns me. It sounds like you have TED (thyroid eye disease.) From your post, it seems that the endo is managing it at this time? Have your endo referred you to a neuro-ophthamologist? If indeed you have TED, you should also have good eye docs who understand it, involved in your care.
There are good posts regarding TED that you can search for. I have TED, if you do, it is a long time before you can have
eye muscle surgery, for the inflammatory stage 9which you must be in, cause you re on pred) has to end. Eye muscle surgery has to be done when the antibodies are no longer attacking the eye muscle. But first, write back to tell more about your eye situation and your docs.
Shirley

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in reply to: First Appt with Endo! #1064737

This is to Cynthia. Cynthia, there are a ton of very recent posts on this board relating to having a thyroidectomy. Try putting the words "surgery" or thyroidectomy" in the Search box. Also, lhc11, just had the surgery in June and you can put her name symbol in the search line. Ask around, ask you doc, ask for the name of a general surgeon who does thyroidectomies in your area. Also (I am sorry, I have forgotten the acronym for the site)there is a site the facilitators have mentioned before, to help you in your search, plus I THINK this site may have a similar way to find surgeons who do thyroidectomies. You can learn a lot by reading lch11’s post op experience, and hers is so recent. Mine was a long time ago, it was fine, I had a sore/stiff neck for about a week. Was able to get up and walk around, do things the following day, got really tired, throat was sore when I swallowed, all typical stuff.

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in reply to: First Appt with Endo! #1064733

Hi, it does sound like you had a very thorough appointment. he sounds great. Everything about Grave’s, hyper and hypo, takes way too long for everything. That is what everyone on this board has experienced. It is a waiting game, and we will wait with you. The first thing is for you to get less hyper, that is why you’re on meththimazole. YOu will feel better. When you get to that stage, you can decide on your options. I do disagree with his statement that a thyroidectomy is used only for emergencies. YOu will find that is not the case. I chose surgery, would do it again in a heartbeat,over RAI. There is no "right" answer, a lot has to do with what you want, the options available to you. Depends on where you live, too. I have found that different parts of the country emphasize different philosophies. Sometimes it simply has to do with where they went to school, what was emphasized. But we have choices. There are many current discussions on this board on this subject.

lhc11, who also answered you, chose surgery, she had it just last month. As you can tell from her comments, she is very pleased with her decision. The posts she mentioned will have a lot of conversation about it, including mine.
Now it is important for you to get well, feel less hyper, it is tough on you and your body. I am sure your endo wants to moniter you closely as you begin you treatment. You’ll be hearing for others, plus our wonderful facilitators.
Welcome to the club you don’t want to belong to, but everyone here is in the same club! We help each other.
Shirley

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in reply to: whats going on? #1064741

I am writing a brief acknowledgment of your post until a facilitator sees it, and answers. There have been some excellent posts by facilitators in the recent past addressing this subject. i think you re doing everything right by calling the doc. What is your pulse rate along with the other symptoms? Just something to be able to report along with them.
From what I think I remember from facilitator posts, is that there is thyroid hormone residual that hangs around for varied amounts of time after RAI. I also think I recall that in rare instances, RAI may need to be done more than once, but having said that, you probably are in a different place than that at this time.
The labs and your symptoms both matter a lot. It is possible that you levo dose may be too much, especially if you have some remaining hormone running around. Getting the "right place" can be a long and very frustrating process.
I suggest leaving a message at his office for a call-back when your labs are back. Just call’em, give them a heads up that you did get them drawn Monday morning. It’s probably reasonable to hope to hear from him on Wed/Thursday.

If he said that there was no way that you could be hyper again (were those his word?) that is a bit of a concern to me.
But this is not really the time to go shopping for another endo. The symptoms you have mentioned certainly do sound like hyper symptoms, especially since you have been hyper, and are likely to recognize them.
I am sure that this will get straightened out, but like everything about this darn disease, it taxes us to the maximum.
I totally understand how you feel
Shirley

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in reply to: Just found out I have Graves 3 weeks ago – Help #1064766

OK. you are right, you need a new endo. Of COURSE these symptoms should be heard by your end. Where do you live, if you would like me to, I will as my endo in SEattle is there is a clone of him where you are. Let me know.
I am not sure why you need an MRI. I see no justification for it which is why your insurance company may be balking. Who suggested it and why? Hope the facilitators jump in on this one.
If you are having eye symptoms (which seems like this is not an issue for you) you might need an orbital CT to confirm tED., plus a good eye doc familiar with tED and a neuro-eye doc.
Look forward to hearing from you,
Shirley

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in reply to: Anyone NOT gain weight after RAI? and VENT #1064876

My experience with hyPER was that I could comfortably eat 4-5000 calories/day, was compulsively hungry, and still lost weight. I kind of LIKED that part of being hyper. I know this had been addressed before in the recent past, but being aware of this, and keeping a record of what is eaten after you are through with hyPER, can be pretty humbling. During hyper, I got used to being the person who could eat like a hog and not gain weight. People remarked on it favorably. So the reinforcement was positive.
Because our bodies are so stressed, our heart rate so fast, our muscles were wasting, the physiological tendency is to eat more to maintain this whacked up machine-body when we are hyper.

It is quite a surprised to rejoin the world of moderate eating. Keeping a log is a good idea. Being aware that women, especially, may tend to view themselves at a weight that is unrealistically thin, as their goal. Lots of dynamic with all of this weight gain/loss stuff without thyroid disease thrown in! I think the biggest thing that shocked me was that I thought I eating my 15 flavored jelly beans and one square of chocolate a day (I love these two items.) But when I gutted up and recorded what I REALLY did, it was a finite, objective fact for me to see. For me, I can eat anything I want if I watch my portions. Our whole culture seems to be geared to "more is better." This is represented by most meals when you eat out. There is almost always enough for two meals in one order.
so,these thoughts work for me.

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in reply to: Tired of being tired #1064820

Yes, you should. Although it is not a weekend thing, not emergent. It is a side effect of one of the antil thyroid driugs. AReyou taking any? It is late, I am tired, and too tired to say much tonight. The facilitators will weigh in tomorrow,, but believe me, you are not alone in this world of thyroid issues. I do recall it as a specific side effect, so the next step is th hear which drugs you are taking. Call on Monday, leave a message, emphasize it is a new symptom, and you re mighty concerned, ask for a call back the same day. The best to you for the rest of the weekend. Hydrocortisone ointment and/or benedryl ointment may help with the itching. Try the latter first.
Shirley, not a professional, just from experience.

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in reply to: EYES WATERING, TEARING ALL THE TIME! #1065030

I am sitting here with tears streaming down my face, but not crying. Thanks for your replies. I wish I had the plugs to look forward to, but I already have them (at $500/eye, it took 5 seconds, and was not even a sterile procedure!) Of course I ams ure the plugs were sterile. I have noticed no difference at all. Guess I will try to find out if the plugs can make the tearing worse, cause it is. I sure can relate to driving and eyes tearing. I actually have decreased my driving to almost nothing, because of the extreme sensitivity to light (which makes them tear, but basically they tear for no reason.) Generally, I can count on dabbing my eyes over and over again all day long. I am really excited about seeing the strabismus surgeon, and the eyelid surgeon after that! Guess it shows to what depths I have gone to be happy and giddy about looking forward to a doctor’s appt! I carry drops and tissue everywhere. I use the lubricant and gel at night, and just ordered a special kind of tape (forgot the name right now, only remember very vividly that one roll is $32!) Hoping it will be easier to help my left upper lid stay shut while sleeping.
I know that I have said all this before. It was a nice surprise to get your note today, Kimberly, for I was feeling very discouraged about this. It helps so much for you to understand…….shirley

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