[Anonymous]

#1024848

hi Diane. I always find your knowledge and logic so comforting. Thanking you for much of what you have said…. I have finally? learned how to better cope with the Graves and all its’ stuff, be it physical or mental. And your post, re Xmas shopping, keeping it simple, and then just simply stating to those around us:
‘I just could not shop as I wished to’. We are the ones who go thru this ‘stuff’–and the best thing I have done for myself, is to finally accept me as I am….stop trying to do what I “used to”, stop trying to BE, ‘what I used to’. I more easily admit “I can’t do it”. I know I am not using Graves as an excuse. I really just flat-out “can’t do” so many things as I wish. Acceptance, but always striving to make our situation better, is the best Christmas gift we warriors can give…….
to ourselves!
however, believe me, I do know there are mothers of little ones out there, who can’t as easily accomplish this. I comprehend how difficult it is for them…and those who have full-time jobs. My heart goes out to them all. I remember my Grandma always saying (if I complained about something): “Well, God only gives the Good People no more than they can handle”. easy words,—must make all us warriors “special”? for we do bear much!! Happy holidays, warriors. Keep smiling, keep moving…towards better days. And thank you Diane, for all the time you spend helping us. Jerilyn

[Anonymous]

#1089888

I am new to all this, and I don’t mind telling you all, that I am more than a little frightened. Everything I read references months, even years instead of days and weeks. As I wrote initially I was given a probable” diagnosis on 6/26, but my scan is not scheduled until 7/20 and 7/21. (no one has even told me why two days!) My first appt. with an endo was scheduled for 8/28!!!! Seems crazy to me…so today I called Dr’s and clinics and centers in the Bufflo area (4 hours away) and found a center that will see me on 8/2.(If the doc’s are as nice as the scheduler I will be in good hands.

It seems if getting better is such a lenghty process the sooner we start the better for us…Some of the places I contacted couldn’t see me until November. How can that be?

It seems like new symptoms show every day….and the old ones just get worse….Is this a normal experience??

Thank you all for being here…….and sorry for “venting”.

[Anonymous]

#1089889

Hi mary3l5,

First, we completely understand all of your feelings — this is different than most diagnoses, and treatment options and timelines are complex.

Let me give you a little bit of information.

Here’s why the scan is scheduled over two days. They give you a non-damaging RAI isotope (NOT the one they use for treatment — this one is used only for imaging purposes) on the first day. They typically ask you to come back in at 6 hours after the dose, and then 24 hours after the dose, because that will give them a complete picture of HOW your thyroid is taking up iodine. This will confirm (or dispute) your Graves’ diagnosis and it will also give them a benchmark to use in the event that you choose to have RAI treatment (it helps them to figure out your optimal dose).

I’m not sure precisely the reason behind this, but I have found that every endocrinologist I’ve had contact with is EXTREMELY busy. Maybe there are too few physicians in the field, maybe endocrinology just involves much more “face time” with patients, I’m not sure, but I do know that they are all booked well into the future. All that aside, however, when you are feeling very ill, it’s worth it to try everything you can to be seen sooner. You were wise to check around, and you may have even found yourself a place that will be better for you anyway (since you say the scheduling staff was so considerate). If you still feel that’s just too far off, you may want to ask your primary care physician to call the office and see about “squeezing” you in even earlier. In the meantime, do all the research you can so that you get everything possible out of that hard-fought appointment. Write your questions down, and bring someone with you if you can to keep notes of everything that is said. We THINK we’ll remember everything, but we typically don’t.

I understand this is scary, and I completely understand that new things are coming at you from every direction, every day. TRY to relax. We are fortunate in that there are treatments available for Graves’, and while none of them will help you to feel better by tomorrow morning, you WILL feel better and you know that. There are people here who searched for up to five years just to find out that what they needed to treat was Graves’ Disease, not anxiety, or depression, or allergies, or any of a million other things. Along the way you WILL have improvements — it’s not as if you’re going to feel your worst until one magical day when you feel completely better. We get better by degrees, and we need to celebrate each step in a positive direction.

Don’t be sorry for venting. That’s exactly what we’re here for. At least we can help you a little along the way, and we completely understand how frustrating the entire situation is.

Make time for yourself every day, to do something that makes you feel nurtured, satisfied, happy. It will do wonders for your attitude overall, believe me.

I’ll write more later, I must go for now.

Wishing you strength!

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1089890

Please don’t feel that you are venting. The fear of the unknown is normal. I had to wait almost 2 months before I could see an Endo and it sure seems like a long time. I was diagnosed March 3rd and my first appointment with the one doctor that specialises in thyroid eye disease is Aug 25th.

I too was frustrated with the wait for a doctor appointment. I called Mayo and they could see me before the local doctors. I almost went, but a friend who is a doctor recommended against it. His feeling was that there was going to be so much followup that I would need after I decided my treatment and I would never be able to continue to travel the 700 miles or so to see the Mayo docs. He recommended I find one here in our City and stick with him/her. It was a good choice. My Endo schedules me an appointment for every 4 weeks during this phase and I have standing instructions to call for an appointment anytime I feel need to see him.

The two days for the uptake scan is normal. The first day they give you a small dose of radioactive iodine. One pill. The next day they put a wand type devise up to your neck that measures the amount of iodine in your thyroid. Mine was 39%. The normal-high for the hospital that I went to was 27%. They also did an imaging scan, I just layed on a table and the xray type devise took pics. No big deal.

The one thing that helped me the most during the initial diagnosis was the beta blocker my PCP put me on for the symptoms. It does not change the diagnosis or treat the Graves, but it helps with the symptoms. Not all docs prescribe this and not all of us need it. But it might be worth a discussion with your doc.

I tend to be a very analytical type person. I am a programmer by trade and boy did I want to debug this whole thing. I tried changing all my little routines to see if anything helped. It didn’t and still hasn’t.

I chose RAI and had it on May 11th. Today to got my latest lab results and my TSH has finally started to climb. Not bad 9 weeks. I still have the hypo to go thru, but I have learned that I can’t do anything to change the speed of this process.

I will say that very early on, I decided that I was going to limit myself to very specific places on the internet that I would look for information. I chose Mayo Clinic and John Hopkins for specific medical information about drugs, procedures and secondary diseases. I chose this bulliten board for information and go a wonderful group of people who would listen and care. I check this at least 4-5 times a day. Spend some time and search thru the back posts, they are a wealth of knowledge. One of my favorites is at:
http://bb.ngdf.org/Messages/0043/57043.htm
Jake really does a good job. I also have sent to my family others that are very clear about what I am going thru. It helps them to understand and saves me from trying to explain whats going on. My mother really likes this way of learning about Graves. She feels that she knows Ski and Bobbi, my thanks to both of you!!

Think about starting a journal. I write down my symptoms, doctors instructions, lab tests and my basis ‘outlook’. It sometimes helps to look back and remember what you went thru or a specific instruction from a doctor.

I know it would be easier if we could just take a pill or some procedure and have it over. But this is a process that we go thru. Boy that is hard to accept.

I wish you lots of luck and good thoughts as you start thru this, remember everyone here has been where you are. We all understand. Some are further along than me and that helps me to have hope.

Take time for yourself….it’s ok to cry, get mad, or sulk. We have all done it.

Cindy

[Anonymous]

#1089891

The suggestion to keep a journal is wise. I wish I had thought of it myself, it would be nice to look back on the last 2 years and read how I was, as time always dulls the bad for me. I know I was very sick because my family members have a sharper memory than I do!!! I live in North Tonawanda, a suburb of Buffalo! I to had to change Endos because it took forever to get appointments from the first one. I have been in remission for a year now. A very good thing!! But I still seem to have symptoms, extreme heat intolerance, muscle weakness and occasional heart palps. Could be menopause, of course when I thought it was menopause before, it was Graves!
Happy Summer!

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