[orpy]

Originally Posted by lottadata

Dave,

Is your doctor who knows about MODY in Massachusetts? If so, PLEASE let me know who it is. I'm in WMass and have yet to find an Endo who has ever heard anything about it

I'm from Western Massachusetts also! So you can let me know too! Which brings a question to my mind...when do you know it's time to switch to a new endo. Sometimes I'm not sure I'm getting the best treatment yet I'm afraid that if I switch, I might get worse...

I haven't seen the actual endo in over a year...I see the nurse pracitioner...is this normal?

[lottadata]

Originally Posted by orpy

I'm from Western Massachusetts also! So you can let me know too! Which brings a question to my mind...when do you know it's time to switch to a new endo. Sometimes I'm not sure I'm getting the best treatment yet I'm afraid that if I switch, I might get worse...

I haven't seen the actual endo in over a year...I see the nurse pracitioner...is this normal?

All too normal, and one reason people with diabetes have such poor control in this area.

The family practice doctor I see is in one of the better practices, but his "diabetes nurse" must have been trained in diabetes treatment 25 years ago and is outright dangerous. She's still telling people to roll their Lantus before injecting. She prescribed me 1 inch needles in a guage you could have used for crocheting. And she wanted to inject me with Lantus at 2PM in the afternoon. When I called her with hypo symptoms, she did not recognize fast pulse as a hypo system and I was referred to a cardiologist who also did not consider hypo as an explanation.

It was. But I had to quit the overdose of lantus to find that out.

And of course the nurse is still telling people to eat bananas and oatmeal and and keep their carbs high and their fats low.

I saw the doctor rumored to be the best endo in the region some years ago. He took one look at my records and said,"I don't treat people until their A1c is in the 8% range.Don't come back until yours are that high." They never have been, and they never will be if I can help it, so that was that.

I see another endo who is willing to let me try things I want to try, but I have to do all the research myself as this doctor has never so much as looked up MODY after I got the diagnosis figured out on my own. I figured out the insulin dosing myself by reading Dr. Bernstein's Diabetes Solution a few times. About all the doc is good for is writing prescriptions. If I run into real problems I would be SOL with all these doctors.

[GuitarManDave]

To those who asked:

The guy I see is in Worcester - Dr. Nitin Trevedi. Very smart guy - did a fellowship at the Joslin Clinic a while back but is now in private practice. He definitely knows his stuff and actually listens to what I have to say.

Jeez - I never thought I find other Mody folks so close to home. We should start a club - call it Mass Mody

I submitted blood for genetic testing a few weeks ago to confirm the Mody diagnosis. I'm going to be seriously frustrated if it comes back negative. I'll let y'all know. Incidently, Athena Diagnostics - one of the few labs who does Mody testing - is right here in Worcester. I had my endo draw the blood and I dropped if off at their labs personally. Can't beat it for convenience!

Dave

[orpy]

Originally Posted by GuitarManDave

Jeez - I never thought I find other Mody folks so close to home. We should start a club - call it Mass Mody



Dave

I would seriously consider a support group...I could use someone to consult with who really gets it! No one I know even understands diabetes...even some folks I know who have it...they still think it's okay to eat the craziest stuff (like corn and peas; together).

Anyway, are we allowed to say who we see? I go to the office of Dr. Korff however I see his nurse practitioner Jessica Tropp. She seems pretty informed although a bit disorganized at times. I haven't seen him in eons. I chose this office because he had treated me during one of my pregnancies. When I was pregnant they sure made sure I was in control. Apparently it's not as crucial now that it's just me! It's been three years of less than aggressive treatment and at this time, I am demanding more. I have decided that if they don't agree to giving me daily insulin (besides lantus) that I am going elsewhere.

[lottadata]

Originally Posted by GuitarManDave

To those who asked:

The guy I see is in Worcester - Dr. Nitin Trevedi. Very smart guy - did a fellowship at the Joslin Clinic a while back but is now in private practice. He definitely knows his stuff and actually listens to what I have to say.

Jeez - I never thought I find other Mody folks so close to home. We should start a club - call it Mass Mody

I submitted blood for genetic testing a few weeks ago to confirm the Mody diagnosis. I'm going to be seriously frustrated if it comes back negative. I'll let y'all know. Incidently, Athena Diagnostics - one of the few labs who does Mody testing - is right here in Worcester. I had my endo draw the blood and I dropped if off at their labs personally. Can't beat it for convenience!

Dave

Did they make you do the whole 6 test suite? When I contacted them last year they wouldn't let me just test the two genes I was interested in. And my insurer won't pay so it would have been $3,000+ to do it.

Orpy,

Korff was the guy who told me not to come back until my A1c was 8%. He has the local reputation of being the best doctor for thyroid issues. But he made it clear he thought an A1c in the low 6% range was wonderful even if I got it eating no more than 60 grams of carb a day, and that was that.


So where are you located? I'm near Greenfield.

[GuitarManDave]

Originally Posted by lottadata

Did they make you do the whole 6 test suite? When I contacted them last year they wouldn't let me just test the two genes I was interested in. And my insurer won't pay so it would have been $3,000+ to do it.

Orpy,

Korff was the guy who told me not to come back until my A1c was 8%. He has the local reputation of being the best doctor for thyroid issues. But he made it clear he thought an A1c in the low 6% range was wonderful even if I got it eating no more than 60 grams of carb a day, and that was that.


So where are you located? I'm near Greenfield.

I think they only tested for 5 of the genes - based on symptoms I'm most likely Mody 3.

My insurance covered it with nary a complaint otherwise I probably wouldn't have bothered. I'm hoping it comes back positive in which case that researcher you referred me to will include myself and probably my children in his study so they might get tested for free. I can't imagine insurance would pay to test them when they are symptom free.

So I was mostly joking about putting a support group together but I wouldn't be opposed to meeting in the "real" world to compare notes, etc. I also think it is a crime how many endocrinologists I had to go through before I got good treatment - and I hear nightmare stories all the time. There should be a referral network where people can share their experiences and help people hook up with good doctors *as reviewed by patients*.

[orpy]

I am located in Hadley, MA

****, so now I understand why I'm starving to death and still not achieving good control...although I think Korff would agree that I should at least be under 6.5...

Last time Jessica Tropp put me on Lantus, then said, "if you're hungry, then eat more protein." I'm sick of protein...I mean, I can't even eat 15 grams of carbs at a whack...we're talking one piece of bread, a tiny bowl of cereal, will send my numbers up...

So, any suggestions for endos in this area who will give me tighter treatment? You can write to me personally if need be.

I wouldn't be opposed to getting together to compare notes on area treatment options.

That is so funny; they blocked out my first word which was d_a_n_g; not even a swear!

[lottadata]

Lantus is the WRONG insulin for MODY.

The defect is in post-prandial secretion. When I get to where I have enough Lantus in me to begin to cover meals, I'm hypoing at night and having an extremely fast pulse all day thanks to counterregulation.

Very small doses of meal time insulin work much better for me. 2-4 units, tops. That drops what would be a 280 to 120.

For some people diagnosed with MODY Byetta works extremely well, too.

I got just about normal blood sugars with the other incretin drug, Januvia, for a while, but it impacts the immune system and looks like it might be very dangerous for a melanoma survivor (which I am) so I had to stop taking it. Plus by 3 months the side effects were getting intolerable: nonstop splitting headache and my digestive system ground to a complete halt.

Byetta doesn't affect the immune system, but the one time I tried it, it was a bit overwhelming for me. My blood sugars are a bit worse now, so I might give it another try.

If you have LADA, on the other hand, Lantus might be better, but you still need the meal time insulin.

I did 6 weeks of the Bernstein diabetes diet with no insuiln this past winter to lose some of the weight I put on when I stopped metformin and shifted from R to Novolog. I was eating no more than 6 grams per meal and seeing okay blood sugars
but I got hungrier and hungrier the longer I did it until it was impossible to continue. I am not at all hungry when I use post-meal insulin.

I'll email you privately about the doc.

[orpy]

Got back from my endo nurse practitioner today and I now have humalog! I am really happy yet now I'm scared too. I have been living for the past three years barely eating anything with carbs. Now I'm afraid that if I get used to using insulin, that I'll start to eat everything. I plan on taking it real slow. It's interesting how I have come to depend on controlling my diet so much; I had to. Now it sounds like I'll have more leeway to eat yet I'm afraid of losing control.

[lottadata]

Because you really need insulin, weight gain is not going to be an issue.

When I made an experiment of trying to go back to very low carb as my only form of control a few months ago, I found I got raventously hungry as my blood sugars were higher than they are with insulin. Going back to insulin the hunger disappeared.

I think the problem with insulin leading to weight gain is mostly because it is prescribed incorrectly and people do not learn how to match it to their carb intake, so they end up having to eat to catch up to their too-high insulin doses.

[orpy]

Well, when I was on prandin which gave me lots of lows, instead of eating to remedy it, I would pop glucose tabs...(I love those things and my kids do too)!

Experimented last night by injecting .5 unit humalog...clearly I miscalculated...ended up with 160 after meal...I guess I was expecting big things and I was overly cautious...

Guess I'll be using a lot more testing strips...is there a limit that insurance companies will allow?

[orpy]

Also, does anyone reuse needles for lantus solostar and other pens. I know they say not to but they also say not to reuse lancets...

Any comments about this? Until I hear otherwise, I'll keep using a new needle but it seems like such a waste.

[lottadata]

You can reuse pen needles.

The one thing that can happen with pen needles is that the pen will leak a bit if you leave the needle on between uses. So I take the needle off between uses, but reuse the same needle.

Dr. Bernstein discussed this topic in his most recent teleconference and said that reusing pen needles was fine. Just change them if they start to feel dull. Also, don't forget to do the air shot each time before you inject. VERY important. If the pen needle is at all bent, change it.


With the Solostar, my doctor gave me one as a sample, but I use such small doses I like to use fractions, so I extract the Lantus with a syringe.

I reuse the syringe, but do NOT inject air into the pen (or vial).

[Hammer]

Originally Posted by orpy

Also, does anyone reuse needles for lantus solostar and other pens. I know they say not to but they also say not to reuse lancets...

Any comments about this? Until I hear otherwise, I'll keep using a new needle but it seems like such a waste.

I don't reuse my needles for the SoloStar. I guess you can, but at 20¢ a piece, I'd rather use a new sterile needle than take a chance on getting something because I was trying to save the 20¢.

Just curious lottadata, but how do you store a used needle? Once you peel the sterile strip off of the bottom of the needle, how do you keep the bottom from getting contaminated?

[lottadata]

Dave,

Did you get back your MODY test yet?

My doctor just gave me a prescription for Prandin and I'm going to be testing it, mostly out of curiosity.

I'm going to start out using 1/4 of the lowest dose, along the lines of what Dr. Hattersley says to do with Gliclazide, the sulf he recommends. It isn't sold in the U.S.. But my assumption is that because Prandin stimulates the beta cell regardless of glucose level it probably won't be my drug of choice. With insulin I can match the dose to the incoming carbs.

just had my once ever six month endo appt and the doc gave me samples of Apidra to try since now that I've dropped the metformin Novolog was not working as well as it used to before. The met didn't make a large difference in the dose, but it did make a difference in the height of the peak--probably because it suppresses liver dumping of glucose.

On my first test of the Apidra the activity curve was perfect for covering 24 grams of whole wheat bread and peanut butter. I was 24 mg/dl over baseline at 1 hour and back to baseline at 2. At 3 hours I was 14 below baseline, but since baseline was my morning fasting reading and I also have stopped taking Lantus due to the blood pressure problem I get with it, the fasting was high enough that the 3 hour reading turned out to be perfect.

So that's nice.

Now if I only could find some way of lowering my mildly elevated fasting blood sugar that didn't push my BP up, I'd be happy. My fasting bg was normal until about 3 years ago (age 57) and it has been inching up since then. Probably because all those years of relying on basal secretion to mop up carbs has taken its toll.