Seeing an Endo for the first time. What questions should I ask and be prepared to answer?

I’ve been diagnosed as a Type 1 for a bit over 1 year now. About 6 months ago I’ve started feeling really tired. Loss of focus. Low libido. So when I had my last labs done with my Doctor I asked if he could see if I was having any Thyroid issues. He also suggested checking my Testosterone.


When the labs came back my Thyroid TSH was 2.5. That's was great as far as I know. But the Testosterone values shocked me. My Free level was 11.2 (Normal is 9-30) and my Total was 238 (Normal 240 - 950). My Doctor said that my levels were fine.

What upset me was I told my Doctor how bad I was feeling over the last couple of months. The fast weight gain I had. My issues of my libido. And he said I was fine. WHAT!

So I've decided to see and Endo for a 2nd opinion on my Labs and make sure my current Doctor isn't missing anything important.

So when I get in to see him what should I expect? What should I ask? What should I be prepared to have with me and have answers for?

Hi, Jimmy. Your thyroid level is a bit high. Using TSH as the only measure doesn’t always catch hypothyroidism, especially if it’s the autoimmune type (Hashimoto’s). Some doctor’s order other tests and others go more by symptoms. Check out these websites for more information. http://thyroid.about.com and stopthethyroidmadness.com. It sounds to me like thyroid could be the problem. As a Type 1 you are more likely to have other autoimmune problems. If you do end up diagnosed, I recommend natural thyroid treatment, (Armour or Naturethroid) because the synthetic replacement therapy (Levothyroxin) actually causes more problems with loss of libido, joint pain etc.

Hi JiMMy- Let me first provide a disclaimer for the comments I am about to share. In no way, shape or form am I an expert on diabetes. With that being said I must tell you that I have always visited an Endocrinologist to treat my diabetes. (I have been T1 for almost 22 years) I think seeing an Endo is a wonderful and very smart decision on your part. The best advice that I can give you is to be completely open and honest with your doctor. In the past, I often tried to hide some of my bad habits and it just came back to bite me in the rear! :slight_smile: I would recommend keeping a food diary (for at least a week), having your BG readings, and also a list of any medications (and dosages) on hand. I hope that you will gain a sense of relief after your visit! I’m glad that you are opting for a 2nd opinion!

jimmy:

I wish you well with the doctors visit. I know things tend to come and go, and I hope your visit will go well. Here are the things I would ask a new endo. What hospitals do you keep service at? how long have you been practicing? How many patients do you have on the pump? What is the average age of your patients? .

I have a preference for younger doctors, who have a younger clientele and who rely mostly on the pump. i also try to align all my doctors with one hospital service. Depending on where you live, you may have access to only hospital, but if there are many, I want my endo around, should I have ot go int he hospital.

rick phillips

I’ve got an appt to see an Endo finally on March 15th. Taking my wife along as well. I’m happy now.

Hey, I think new doctors are tough. I would suggest really just focusing on what’s been your worst complaints, biggest questions lately. They will have a long time to get to know the ABCs of your diabetes, but you are there for a reason now, so you should work on that first. that’s worked best for me! good luck.
~emily

Thanks. I’ll be taking a bit of everyone’s ideas to heart. I just want to feel better. Like I did 1 1/2 years ago before this all started. So frustrating at times.

Me too!!! I mean my appointment is on the 15th, and I’m taking my husband. See, great minds think alike!!! Good luck with your endo!!!

I second Libby’s opinion, and I strongly suggest that your new doctor test not only for TSH, but for T3, Reverse T3, and Free T4 levels, along with Thyroid antibody levels. The TSH can be a good indicator of malfunction, but it is NOT the ultimate answer when it comes to Thyroid Illness. Doctors who only go by this, are not looking at the entire picture, and possibly leaving their patients still struggling with many symptoms. Great advice, Libby! :slight_smile:

Thanks to you both. I’ll make sure to discuss this with the Dr. when I see him.

Hi JImmy,

Looks like you’ve gotten great advice from everyone! I just wanted to say hi and see how the appointment went.
=)

It’s a week from Tomorrow. I’ll let everyone know on here what he says and if I’m started on anything for Thyroid or Testosterone.

HI all - Here’s a quick update from the meeting I had with the Endo. First off though let me say that I had my Wife come with me. She wants to be involved. But since being diagnosed my wife has always wished for me to be Type 2.

1 - The Endo was a difficult man. He looked at my paperwork for a few minutes then wanted to know my history and why I was there. Fair enough. So first I off I started to say why I had come to see him. And he cut me off from that point on through the rest of the meeting.

2 - I gave him a fast idea of how the symptoms came on. When I was diagnosed. And what my current insulin values were. He stated that I was misdiagnosed and I was a Type 2 based off my A1C values, the amount of Insulin I’m taking and because I’m a large guy. Now that’s all fine and good. But he started pushing pills and changing my insulin routine. My wifes eyes glazed at this point that her hopes had been answered.

3 - He harped on my big time that my A1C’s were too low as well. I’ve had 5.1, 5.2 and 5.4. I’ve worked very hard in keeping my BS around 85 pre meal and no higher than 150 2 hours after. But he said to back off the insulin if I stay on it and raise my A1C’s up to 6.5 to 7. He went about stressing that with A1C’s that low that I had a strong chance of causing coronary complications. Now from what I’ve read a normal everyday person has and A1C of 4.3-4.6%. And I read that the reason they believe there is a coronary risk for diabetics is the issue of HypoGlycemia. Now last year I had a couple a week. But I’ve stabilized my meals and insulin to control all those issues. So I’m ignoring this.

4 - Said that the reason I wasn’t Type 1 was because the Honeymoon Phase only last’s 6 months. Now from what I understand the Honeymoon phase can be anywhere from weeks, months and sometimes years (Type 1.5 LADA for example). He just stated this as a fact. Can’t last for more than 6 months.

5 - One reason I went was because of the low Testosterone values. But he ignored that totally and stated that the insulin I was taking was causing the weight gain. But I was eating a 1800 - 2200 calorie diet. But again he just ignored this info. I will tell you that I cut down my caloric intake to 1300 -1450 calories a day now and I’ve dropped 7 pounds. And I had to argue for a Lab for another Testosterone check. I’m waiting on that and hope to here today or tomorrow.

6 - I told him when Diagnosed that I was trained to be doing “Tight Control” from my CDE. This was why I was keeping my BS values at 85 - 100 pre meal and 125 - 140 after meals. He said “what are numbers?”. “Why worry about them?”. A1C is the only thing you need to worry about. But I asked then what about a 180 or 200? Don’t you start having some issues once you get about 150? He said don’t worry. Don’t check my BS as often. Only worry about the A1C.

7 - And the last thing was he treated me like I knew nothing about my disease. Well I’ve spent the last year reading books, websites, forums and help from all of you. I think I know something. Yet every time I asked even the most simple of questions he treated my like a little 5 year old and started explaining things. So I just smiled and suffered through.

So - We leave the appointment and I ask my wife what she thinks. She thought everything that he said made sense. Was happy to hear that I was a Type 2 and wanted to know when would start on pills. I started telling her what I disagreed and we got into a big fight. I’m a “know it all and stubborn.”

So after cooling off and deciding what I want to do this is what I want to do.

1 - Ask for a new C-Peptide test - Compare to Jan 2009 values. Are they the same? Higher? Lower? I was just below normal when I was diagnosed.

2 - Run tests to see if I’m 1.5. I don’t want to just state I’m Type 2 and change everything since I’ve been able to control my BS well over the last 9 months.

3 - And if confirmed again that I have a low Testosterone level find out what course of actions I can take.

Thanks all…

Man, I’d run away from that Endo and find a new one, and FAST. He is the one who knows nothing… That ACCORD study that told people they needed to have a high A1C was FLAWED big time! And the ADVANCE study that was more thorough than this, and again proved people need to have a low A1C… God, some Doctors are just pathetic! … And I am sorry for your wife, but Type 2 is not much better. You need someone knowledgeable, not a complete moron, like this man. :confused: Sorry, that kind of thing just makes me so angry!

Thanks - I feel vindicated somewhat. Just stared arguing with my wife again. She thinks I’m lying to her because I don’t tell her everything I’m doing. Too much to get into… but still she defends the Endo we saw. And she truly thinks that he’s right on everything.

So frustrating. I’m going to see how the Testosterone Lab comes out. And I’ll try one more time in discussing a possibility of Type 1.5 with him. And to run the tests to confirm if it is or not.

I don’t care really what I have - as long as I can control it and live a happy long life.

He’s definitely a QUACK. No one just up and tells someone they are not Type 1 based on only a VISUAL inspection of them! There are many Type 1’s who are overweight. Though I agree with you on getting peace of mind, on what it is you have, I’d still look for another Endo for this journey. Perhaps there are other members who can suggest an Endo in your surrounding area… If your wife wants to help, maybe she can read some of the books you’ve read, or even read a few discussions people are having on Diabetes… It can be frustrating feeling like you don’t know what’s going on… Unfortunately, so many people just assume doctors are the holy grail of care and knowledge, and some, well… Like people in ANY profession, can be mediocre, at best. It just means he passed an exam, at some point, and then never bothered to get properly educated with the changing times. lol Very, very sad… but it happens.

Thanks again.

I guess overall what made me so upset was at the very beginning of the meeting he jumped to the Type 2 diagnosis because - I’ve got TOO GOOD values on my AIC, I take TOO MUCH insulin and I’m overweight (granted but I’m also very muscular).

Now I know that this might be the case in his eyes - But my GP diagnosed me based off the symptoms I presented, Blood Glucose values, minor amount of Keytones in my urine and a fruity smelling breath. He also has about 150 diabetic patients and about 20 of them are Type 1. So I feel that he must know something as well. That’s why I’m leaning to a possibility of being Type 1.5.

I’ll update again soon on what else is discussed or discovered.

WOW! Sorry you had to go through that Endo experience. Is there someone else to see? Maybe you could tell your wife that you’d feel more comfortable with a second op before you change your protocol…make you both happy.

Good luck.

Hey Jimmy-sorry to hear of the frustration. I definately agree with Lizmari to RUN don’t walk away from that Endo…something weird with him. Just 'cause they have letter after their name doesnt make them good! I also agree to see another Dr & would just be a simple “routine” 2nd opinion, and those words may sit better with your other half. My husband too thinks that what the Dr tells him is the word of god. He never believes that in some cases, they just are wrong or could miss something or just be off their game for the day-but you shouldnt have to suffer, ya know.