Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

slpinsd

Endocrinologist Appt From Hell

Rate this topic

Recommended Posts

I had a lovely appt with the endocrinologist this morning. When I showed him my adrenal gland functioning, with very LOW DHEA, diagnosed as adrenal exhaustion, he rolled his eyes. I think it was pretty much over then. I went onto tell him about my symptoms, weight loss, lack of appetite, postural hypotension, gluten intolerance, food intolerances.....He said that I did have all of the symptoms of adrenal exhaustion, but that adrenal exhaustion wasn't a real thing. Then he said that it was, but I would have hyperpigmentation. He said the saliva tests are not accurate (I tend to disagree) and that I am fine (ok, then don't I deserve a blood test?). He refused to do any testing, because it is not very "cost effective" and then went on into this diet schpiel, after I told him my intolerances, to eat ensure or boost shakes (i SAID no dairy), in-n out burger (i had to tell him---we do NOT eat regular BREAD!!!), and then after I told him that, he said, "what about fried foods?". This was comical. It was ridiculous. Then he knew he was digging himself a hole he could not get out of. Then he told me that I needed to see a GI (the GI bloodwork was right in front of him) because I probably had malabsorption related to Celiac. Then he said my bloodwork was fine and I am not malabsorbing my nutrients. Then I asked him about the weight loss and night sweats. Then he said, well, you must have some malabsorption going on. I told him my fecal fat test was normal. Then he changes his mind and says that's just the way I am, my metabolism is fast. In the middle of his nutritional advice, I said "If I wanted dietary advice, I could get that from a nutritionist. That's not what I came here for". Then he said, "well, I can't help you", and I picked up my stuff and walked out. Wow, that was really worth my time.....

Ordered the 30 day hormone saliva testing from my naturopath as soon as I left there.

Share this post


Link to post
Share on other sites

Yes, you're not alone. Generally, the MD profession is far behind the patient population in terms of celiac disease education. It could be due tothe fact that med students spend an average of about 3 days (or was it 3 hours) on related conditions during their 6 years of education. Amazing how smug they can be but when you look at the big picture of how they were educated, it makes sense. The best doctor to go to (And let me know if you find one) is one who knows because s/he's gone through something similar themselves.

I had a lovely appt with the endocrinologist this morning. When I showed him my adrenal gland functioning, with very LOW DHEA, diagnosed as adrenal exhaustion, he rolled his eyes. I think it was pretty much over then. I went onto tell him about my symptoms, weight loss, lack of appetite, postural hypotension, gluten intolerance, food intolerances.....He said that I did have all of the symptoms of adrenal exhaustion, but that adrenal exhaustion wasn't a real thing. Then he said that it was, but I would have hyperpigmentation. He said the saliva tests are not accurate (I tend to disagree) and that I am fine (ok, then don't I deserve a blood test?). He refused to do any testing, because it is not very "cost effective" and then went on into this diet schpiel, after I told him my intolerances, to eat ensure or boost shakes (i SAID no dairy), in-n out burger (i had to tell him---we do NOT eat regular BREAD!!!), and then after I told him that, he said, "what about fried foods?". This was comical. It was ridiculous. Then he knew he was digging himself a hole he could not get out of. Then he told me that I needed to see a GI (the GI bloodwork was right in front of him) because I probably had malabsorption related to Celiac. Then he said my bloodwork was fine and I am not malabsorbing my nutrients. Then I asked him about the weight loss and night sweats. Then he said, well, you must have some malabsorption going on. I told him my fecal fat test was normal. Then he changes his mind and says that's just the way I am, my metabolism is fast. In the middle of his nutritional advice, I said "If I wanted dietary advice, I could get that from a nutritionist. That's not what I came here for". Then he said, "well, I can't help you", and I picked up my stuff and walked out. Wow, that was really worth my time.....

Ordered the 30 day hormone saliva testing from my naturopath as soon as I left there.

Share this post


Link to post
Share on other sites

I am SO SORRY that you had that type of appointment. They are so disappointing. I have had those with numerous other specialties, but I have been very fortunate to have the most FANTASTIC endocrinologist. She has been so supportive throughout this whole thing, and when I went in in a wheelchair, she said -- "Oh, this is not O.K. -- who is your neuro? We have to do something about this immediately." When I see her in a couple of weeks, I'm going to ask her about the adrenal thing, as well. I had a significantly low DHEA in the past and was on supplements. I urge you to find another endocrinologist. DHEA has a converse relationship with cortisol -- low DHEA, high cortisol -- and the ramifications go on and on . . . Additionally, DHEA plays a significant role in the regulation of sex hormones -- don't know if you're male or female, but DHEA helps females convert estrogen into a usable form of testosterone. I wouldn't give up on this issue . . . I would seek out another endocrinologist -- and NOT tell them of this past visit! . . . Lynne

Share this post


Link to post
Share on other sites

That does sound like an appt from hell! I've had appts like that and it is amazingly frustrating. Hang in there. Doctors are very clueless sometimes. It's not even the cluelessness that bothers me, it's that they are unwilling to listen or admit that they don't know everything.

Susan

Share this post


Link to post
Share on other sites
I am SO SORRY that you had that type of appointment. They are so disappointing. I have had those with numerous other specialties, but I have been very fortunate to have the most FANTASTIC endocrinologist. She has been so supportive throughout this whole thing, and when I went in in a wheelchair, she said -- "Oh, this is not O.K. -- who is your neuro? We have to do something about this immediately." When I see her in a couple of weeks, I'm going to ask her about the adrenal thing, as well. I had a significantly low DHEA in the past and was on supplements. I urge you to find another endocrinologist. DHEA has a converse relationship with cortisol -- low DHEA, high cortisol -- and the ramifications go on and on . . . Additionally, DHEA plays a significant role in the regulation of sex hormones -- don't know if you're male or female, but DHEA helps females convert estrogen into a usable form of testosterone. I wouldn't give up on this issue . . . I would seek out another endocrinologist -- and NOT tell them of this past visit! . . . Lynne

thanks- I'm a female. I think I'm just going to stick with my naturopath, who wants to do a 30 day hormonal test, to balance my hormones. Yes- she said that DHEA is a precursor to other hormones, which could mean low estrogen, which would mean night sweats. I think she is way more experienced and knowledgable than he. I have heard that most endo's discount saliva testing, and are not experienced in treating other than disease. Now I have seen it firsthand. The more I think about it, I want to ask for my money back.

Share this post


Link to post
Share on other sites

OMG...your appt. from hell pretty much sounds exactly like ALL the appt's I had with the doctors in my HMO. Its pretty frusterating to say the least. I have to say that my Endocrinolgist wasn't half bad when it came to thyroid issues but when I was scheduled for my Endoscopy (after already being gluten-free 6 months) he said if you want to know if you're Celiac just eat some gluten the night before your test. :blink:

Ummm...ok.

I told him I'd have to eat gluten much longer than one night to get accurate results. He said "Oh....ok...I don't really know....just making a suggestion." :lol:

Doctors are such a joke!

I'm sticking with the naturopath......he is MUCH more knowledgeable in all aspects.

Share this post


Link to post
Share on other sites
I told him I'd have to eat gluten much longer than one night to get accurate results. He said "Oh....ok...I don't really know....just making a suggestion." :lol:

Good God, Rachel--don't know what else to say :blink:

slpinsd--Sorry you had to go through that. I'm glad that you have a Nautropath that you have confidence in.

Share this post


Link to post
Share on other sites

Sorry to hear about your appointment. I suspect alot of us have alot of stories like this. But we underdstand. Whenever I've complained about idiot doctors to my (healthy) friends, they just patronize me and say, "Well, if the doctors says there is nothing wrong with you, then there must not be anything wrong with you."

But keep trying. Doctors are like any other profession --- some are good, some are bad, and most are just trying to make as much money as they can with as little work as possible. (I'm a lawyer, and that's sure the way my proffession is). The general public has little significant interactions with doctors, so we assume that they must all be brilliant, because they are realtively bright and very well educated. But I'm convinced that, as long as it looks like you won't die in their waiting room,they really don't give a damn.

It took me 8 years to find a decent doctor. He teaches diagnostic medicine at the local med school, so he gets intrtigued with the tough cases and won't give up til he figures it out. Talk to your friends, ask for recommendations on this board, but keep looking til you find a doctor who cares about you more than about pleasing his boss at the HMO.

Share this post


Link to post
Share on other sites

Rachel -- I don't know where my head was (usually either in the clouds of up my *%$, according to my kids, but that's another story :P ) -- HMO -- Oh my God. The reason I had to have thyroid surgery is because of an HMO. The endocrinologist I had to see took me off the synthroid I had been on for YEARS. My thyroid grew to the size of 4x normal on the left (that they could measure) and 3x normal on the right. It ended up growing around my trachea and down under my breastbone. I finally paid out of pocket to see my good endocrinologist. SLPINSD -- I had completely forgotten about that (probably have blocked it out of my memory to save my sanity) -- the HMO guy actually had my thyroid levels so screwed up that I had organic depression and had to go into the psych unit. I was discharged as soon as the psych MD saw my thyroid levels and told me to get a "good endocrinologist." I told him who mine was, and he repeated, "you need to get a good endocrinologist." I told him of the one I see now (that I previously saw), and he told me -- "It's worth the cash to go back to her. Believe me." When you find a good doc -- whether its MD, naturopath, whatever, and you're doing well -- stick with it. Best of luck to you, and I'll be thinking and praying for you. Keep me posted . . . Lynne

Share this post


Link to post
Share on other sites

Thank you guys. I feel so much better. The sad part about it is, that I found the doctor on my cities "top doctors" list. Only 3 endos made the cut. He was outside of my HMO, I was using my PPO. He was nominated by "peer review". I guess he's done a good job at pleasing his peers, but I highly doubt he would make it if it was according to his patients.

Share this post


Link to post
Share on other sites

We have a "Best Doctors in Louisville" issue of Louisville Magazine each year. The amazing thing is, all the MD's are nominated and voted on by other MD's!!! Check with some of their patients . .. . . .

Share this post


Link to post
Share on other sites
Guest stef 4 dogs
We have a "Best Doctors in Louisville" issue of Louisville Magazine each year. The amazing thing is, all the MD's are nominated and voted on by other MD's!!! Check with some of their patients . .. . . .

Okay guys, My Gi just suggested I need an endocrinologists to rule out Hsimoto's disease. Probably spelled that wrong I know. Now I don't know if I should go! I live near Norristown, PA and there are only 3 listed Doctors with my PPO. Distance is always a consideration. So many irons in the fire can't find the time to pick one far away because of repeat visits. Are there any upsides to this disease? HA!

Stef 4 Dogs

Share this post


Link to post
Share on other sites

I had to have my thyroid removed (completely) because of Hashimoto's which got out of control. (read previous post about the horrible endocrinologist I saw) It caused a humongous growth of my thyroid in an attempt to keep the level of thyroid hormone I needed. In addition, it became cystic, with hemorrhaging within them -- making it a higher cancer risk. I think diagnosing and treating Hashimoto's is really important -- my other docs feel that the autoimmune diseases I began developing are a "watershed" effect from the Hashimoto's going untreated. . . .Lynne

Share this post


Link to post
Share on other sites

Wow...how miserable! I would've walked away too!

In regards to your adrenal fatigue, I would recommend some relaxation therapies! Regular Massage Therapy helps restore the body back to homeostasis and regulate the endocrine system to your normal levels. I might also consult with a reputable Acupuncturist in your area...Help your body heal itself :D

Just a thought.

Emily

Share this post


Link to post
Share on other sites

Thanks! Actually, you must be a mind-reader, because I am looking for a (competent) accupuncturist in our area. The guy who was the BEST passed away unexpectedly a couple of years ago, and there has been no one with his knowledge / skill in our area since. We have a lot of the "I took a 5 day course in acupuncture, so now I know everything" practitioners in our area -- which scares me. As a PT, I can become certified in acupuncture, but it takes a long time, from what I understand. I don't know where these guys have gotten their training, but they're like some of the over-zealous trainers at the local workout places!!!!!

Share this post


Link to post
Share on other sites

hey kristin-- i posted to this thread friday, but the stupid sbc dsl went down :( am sick today...will respond to your e-mail today or tommorrow... sorry for your awful appt!!!

Share this post


Link to post
Share on other sites

I have a very sweet, nice GP who, when I discussed the possibility of celiac disease, readily admitted how very little he knew about it, and then he said "You know more about it than I do." Refreshingly honest, BUT....why didn't he then go find out more about it?????

Share this post


Link to post
Share on other sites

Because, if he is involved in an HMO or a PPO, he is rewarded for not referring and is penalized for referring. They have percentages, quotas, whatever you want to call it, and that's simply the way it is.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • April 17, 2019 Until April 27, 2019
      0  
      April 17-27, 2020   For the past few years many of you have asked us to arrange a River Boat Cruise that will allow us to visit Amsterdam's famous Keukenhof Gardens at its prime time of the blossoming of the millions of Tulips and Hyacinths - alongside the windmills of the Netherlands.  With the participation of a minimum of 20 persons we have arranged an All-Inclusive Cruise from Antwerp to Amsterdam.  This cruise will not be offered to the public until January, 2019 and always sells out quickly.   THERE WILL BE NO MONEY REQUIRED NOR COMMITMENT FROM YOU until we have all the final costs and details.  If you are at all interested check out our website for as many of the details that we have as of this time.   We need your request to be placed on a list of interested participants so we can present that number to Uniworld to show we have the sincere interest in this All-Inclusive Bob & Ruth's Gluten-free Cruise.   PLEASE CHECK OUT OUR WEBSITE FOR THE DETAILED INFORMATION THAT WE HAVE AS OF THIS TIME.   http://bobandruths.com
    • April 24, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • May 04, 2019 Until May 05, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×
×
  • Create New...