[tnapavlu July 17, 2012 at 2:25 pm Post count: 20]

#1059207

When I was diagnosed with Grave’s it was 5 years ago and I lived in Idaho. I was in such bad shape the only option I was given was a full thyroidectomy. From there I was of course put on synthroid and then told to continue seeing the endocrinologist to be monitored and that I would need to do this every 6 months to minimum once a year as Grave’s will be a part of my life forever now.

I have since moved to Colorado and have lived here now for almost 3 years. I have only been going to a FP and Neuro, however, they have both told me I needed to go back to an Endo as I needed to remained closely monitored by a specialist even though my levels are showing normal they may not be for me, and and Endo would know better.

Today my Family dr. sent the referral to the endo only for the Endo to call me and tell me I know longer have Grave’s since I had the thyroidectomy and it would just be a waist of my money and insurance to come and see them. I have officially thrown my hands up. I have read and read and read about this disease, I am soooo confused. Do I have it or am I cured are my bad days a figment of my imagination and I’m just going crazy or what is the deal. Do I need the stupid Endo or don’t I. Somebody please have answers I am so tired and frustrated all I can do anymore is cry out of pure anger and frustration. I thought I had it under control but I know something is not right again!

[KimberlyOnline Facilitator July 17, 2012 at 2:48 pm Post count: 4294]

#1172960

Hello and welcome to our forum. We are fellow patients here, not doctors, but here are a couple of thoughts…

1. If it was me, I would go back to the referring doctor, let them know what happened, and ask them to *call* the endo’s office to explain your situation. It might be that a member of the office staff at the endo’s office didn’t completely understand the reason for your requested referral.

2. No, you aren’t crazy, and no, the “bad” days are *not* a figment of your imagination – but they might or might not be thyroid-related. Getting back in to see an endo would be a first step in confirming or ruling out thyroid issues. Keeping a very specific symptom log on a day by day basis might help your doctor put the puzzle pieces together and figure out what is going on.

3. I know that you are tired and frustrated, but PLEASE be persistent until you find a doc who will give you the care that you deserve. If the endo that your FP referred you to doesn’t seem to want to help, other referral sites are available at the following sites:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

American Thyroid Association
http://www.thyroid.org/

On the ATA site, move your cursor over where it says “Public & Patients” (towards the top center of the screen) and then click on “Find a Specialist.”

American Association of Clinical Endocrinologists
http://www.aace.com/

On the AACE site, click on “Find an Endocrinologist” link on the right-hand side of the screen. (You might have to scroll down a bit to see it). Be sure to select the specialty “thyroid dysfunction”.

Take care – and please check back to let us know how you are doing!

[catstuart7 July 17, 2012 at 4:20 pm Post count: 225]

#1172961

TNA, thyroidectomy only takes care of the thyroid part of Graves’. You have Graves’ disease your whole life – your eye problems now are still a part of it. Some folks do get their thyroid out and never have another symptom so I guess they are “cured” but the autoantibodies could still flare up and cause trouble at a later time. My two cents….it’s worth you seeing a good endocrinologist, perhaps a different one than your doctor’s office first contacted. You’d never need the close monitoring that someone who still has their thyroid does but periodic checks to make sure nothing has gone out of whack with your replacement hormone is important.

[tnapavlu July 17, 2012 at 6:22 pm Post count: 20]

#1172962

Thank you both that helps. I thought I was somewhat correct and it’s good to hear I’m not going crazy! I will start checking into finding an Endo who actually cares, and will listen. Then maybe I won’t have to whine on here…lol. Thanks everyone for listening though and being here for me, you have no idea how much I needed it right now, as people just don’t understand this disease and can portray you as just “lazy” or think it’s all your head.

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