Thyroid Issues....

[wvdisluv2]

Has anyone else had to *fight* to see an endocrinologist I had all but 2% of my thyroid removed 15 yrs ago due to Grave's disease and have just recently started having hypothyroid symptoms (after staying at the same med levels for 15 yrs) I asked my primary care physician to refer me to the endocrinologist that removed my thyroid and am finding it is really hard to get in to see him I received a call today to inform me that my "levels were within the normal range" which I am aware of, but I am STILL having hypo symptoms....has anyone else had problems like this? The receptionist seemed *annoyed* that I had done research and was not happy with my current med levels and refused to set up an appt. at this time.....seriously? Any advice?

 

[honugirl]

Yes, I had to fight to see an endocrinologist for my Cushing's Disease. I know of one endo in LA that does not need a referral, but he doesn't take insurance either, so you pay OOP to see him. He's good with complex hormone problems. You might try calling a local university endocrinology program to see if you can get in. There's always going to an urgent care clinic (not the ER!) and seeing if they'll refer you out. Good luck!

 

[wvdisluv2]

Yes, I had to fight to see an endocrinologist for my Cushing's Disease. I know of one endo in LA that does not need a referral, but he doesn't take insurance either, so you pay OOP to see him. He's good with complex hormone problems. You might try calling a local university endocrinology program to see if you can get in. There's always going to an urgent care clinic (not the ER!) and seeing if they'll refer you out. Good luck!

Thank You! The endo that took my thyroid out is at West Virginia University Hospital, and did a wonderful job! (I haven't had any problems until the last year or so) WVU is the only close university here though I just can't figure out why it is so hard to get in to see an endo?! I may try the urgent care clinic route though~Glad you are doing ok! Take care of yourself! Thanks for the good advice

 

[JessicaR]

Did they test your FT3 and FT4? Graves patients cant be dosed based on TSH alone. So many doctors do that!

Don't stand for that crap. Find another doctor that will listen. Many Graves patients go through what you are going through. It irritates me greatly that a doctor can tell you you aren't feeling hypo because your incorrectly ordered labs say so. Graves patients have to have specific thyroid tests run and unfortunately many never do.

Sorry you aren't feeling your best and I hope you can find a doc that will listen. These sites may be helpful.

http://forums.about.com/ab-thyroiddrs

http://www.aace.com/resources/memsearch.php

http://www.thyroid-info.com/topdrs/armour.htm

This is an amazing group that I belong to. There are some incredibly knowledgeable people that post here.
http://health.groups.yahoo.com/group/graves_support/

Feel free to PM me if you want any more info! Feel good.

 

[honugirl]

Thank You! The endo that took my thyroid out is at West Virginia University Hospital, and did a wonderful job! (I haven't had any problems until the last year or so) WVU is the only close university here though I just can't figure out why it is so hard to get in to see an endo?! I may try the urgent care clinic route though~Glad you are doing ok! Take care of yourself! Thanks for the good advice

You're more than welcome!

Funny how it seems to take time for these things to go haywire...

Have you tried getting back in contact with the endo that did your surgery? Since you were a patient before, you may not need a referral to go back and see them.

It's amazing how crazy it is to try and see an endo. I had to pretty much beg, plead, and sell my first born to see one. I think because a lot of endo problems present as weight gain, depression, etc. that docs mistake for something else.

Thanks! I will. We're still fighting the Cushing's Disease, but I love my endo. Quirkiness and all...

 

[turkeymama]

I don't have any advice, but I wanted to say I will be watching everyone's responses. I have hypothyroidism and my levels have been going wacky over the last couple of years. So far, I haven't seen an endocrinologist but thinking that may be best since we can't seem to find "the right" dose. I don't understand these fluctuations and I don't think the primary doc does either. At least he listens, though, and that's a start.

 

[wvdisluv2]

I don't have any advice, but I wanted to say I will be watching everyone's responses. I have hypothyroidism and my levels have been going wacky over the last couple of years. So far, I haven't seen an endocrinologist but thinking that may be best since we can't seem to find "the right" dose. I don't understand these fluctuations and I don't think the primary doc does either. At least he listens, though, and that's a start.[/QUOTE]

That is 1/2 the battle! I've got a really good primary care doc, however the endo won't see me without a referral.... (this is the same endo that removed the thyroid!!!) Don't stop asking questions and reading/researching~Hypothyroidism is a complicated condition and should be evaluated by an endocrinologist (no matter how hard he/she is to see) if you are having hypo symptoms at your current dosage. I have only started having problems in the last couple of yrs and I really think it is thyroid related~and I will fight to see the doctor if I have to....

 

[DVC~OKW~96]

Having been to an endocrinologist who only wanted to look at labs and didn't listen to a word of my symptoms (that were not relieved with "good labs" and "the right dose of meds) I stopped going.

I found a new primary care physician and she is incredible. She listens and even when "the labs" are "right" she understands that they are not the whole story.

One thing that I ran into was the inadvertent switch of brand name mxs to generic. The generic mxs really made a mess of things, so check that to be sure it isn't a factor in the problems you may be having.

I was diagnosed with Hashimoto's disease several years ago and it's been a long time in getting things remotely "normal."

All that to say, if your current doc won't listen, find one who will. They are out there! It's your health and ultimately your responsibility to find someone you are comfortable working with.

Good luck to you!

 

[Christine]

I will say that I think endocrinologists are in short supply so VERY hard to get into. They probably don't want to take on anyone who they deem has a very, average treatable problem (in their opinion).

My endo retired last year so I had to find a new one (thyroid cancer). I picked up the phone in September to make an appointment and could not get in until February. THAT is how busy they are--and I'm living in the DC area where there are tons of hospitals and specialists.

I just wondering if your primary care wouldn't be willing to run a full panel and work from that. Understandably, if your labs (all of them) seem to be very normal, many docs are hesitant to treat because you can get into cardiac issues with too much thyroid hormone.

Totally off topic OP, but my DD will start going to WVU this fall. We are very excited. How is the hospital there?