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Other Diabetics

For all of us, in the “other” type catagory that do not fit the usual pigeon-holes of type-1, Type-1.5, Type-2 LADA MODY etc. knows someone like this or just interested, please join us. We are the FEW, the PROUD, the ORPHANS.

Members: 29
Latest Activity: Jul 3, 2014

Diabetes Forum

How did you acquire Diabetes?

Started by JDavid. Last reply by RM Jun 16, 2014. 10 Replies


Started by Lucile K.. Last reply by JDavid May 19, 2009. 2 Replies

Comment Wall


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Comment by JDavid on February 13, 2012 at 8:38pm

April...I have no clue about your situation. That said I do know thyroid issues can and do affect BG control for myself and others. After going back (first started in 1971) on thyroid (desiccated whole) Thyroid-s, my BG control has been better.


Comment by April on June 11, 2011 at 9:35am
Hello, Everyone...

My diabetes occurred when I became not HYPERthyroid but HYPOthyroid.....

I had 1/2 of my thyroid out due to a suspicious nodule in 1/2010. Thankfully, it wasn't malignant, but I went on to become hypothyroid. Sadly, a parade of docs insisted this was not the case...could not be the case...until I became more and more debilitated and finally my TSH rose to almost 6 while at the same time they kept upping my dose of the standard treatment for low thyroid...Synthroid. They upped the dose...and all that happened was that I got worse.

Finally, an Endo gave me some T3 thyroid replacement and voila...I got almost instantly better. All was well for a few months (now a year post-op) - but then my TSH #'s went way too low...she had given me too much of the T3 - which can create other issues (like heart arrhythmias).

So she at first slowly withdrew the T3...but the TSH didn't come back fast enough for her...so she practically cut it back to nothing. And within 6 weeks I got very sick again, TSH climbed to 5.0 ....

What does this have to do with diabetes? Well, I'd never had a high BG reading in my life...until 10 months after the surgery when I popped up with a high fasting number at my routine physical. Sadly, frequent self testing revealed very high post prandial numbers.... I tried diet and exercise...but was just losing lots of weight because I could eat virtually nothing. In Dec. I was dx'd with T2 and went on Onglyza. My BG's stabilized. All was well...as at that point, both thyroid and sugar were in control. Life was good...for a nanosecond.

After I went hypothyroid again, I took matters into my own hands as the docs ditthered. I got the blood work I needed to prove that YES, my TSH had risen (I could tell by the fact that I could barely MOVE) -and then I went back on a lower dose of the T3 that I calculated would not suppress my TSH fully. It made me well again and I was tested last week to see what my TSH looks like. Results in a few days.

BUT....NOW my BG's are all screwy again...on the HIGH side. It seems the Onglyza is no longer doing the trick. I'm back to strict carb restriction to control BG AND the other day I ate a 2 oz whole wheat roll for lunch with a pat of butter and protein (smoked salmon) and fresh veggies and a diet coke. I did not finish the roll, so 25 carbs max. At 2 hours, my BG was almost at 160...which is very high for me....on the Onglyza. Without it...I would have been way over 200.

I am now pretty convinced that going hypothyroid has some kind of negative effect on my pancreas...but can't find any literature on it except a study on mice...

Any thoughts????

Anni (Screen name is April).
Comment by JDavid on November 22, 2010 at 5:42am
Welcome Natalie.......

I have had my diabetes treated almost fromthe start as a type-1, however LABELED as, IDDM, T-2 & other. I have had a couple MILD DKA episodes over the decades.

I had a temporary problem when I was 14, while in the hospital and told I would end up on shots. Well I told them what they could do with their shots, and I got BETTER. Again while in the Navy (age 22) it reared its ugly head and admitted to sickbay. The following morning I was told if I could pass a urine sugar test I could return to duty and "forget" about it.

Then when I was 34 I got a sore throat. I ws not getting over it, even went into pleursey(painfull & treated in ER) I tried to make a follow-up apt with my fam doc. He REFUSED to see me. He said I just had a sore throat and he had "SICK" patients that needed him. Well I was sick and it was obvious to everyone else, me included. My boss asked me to see a Co Doc, I told him YES as my doc would not see me.

The morning I saw the company doc, he gave me a clean bill of health and I returned to work in time for lunch. I went home had dinner and later sat down with my wife to split a Coke and watch TV. Next minute my wife called anmeatwagon and off to ER (again). I was admitted to the cardiac ward due to low oxygen. When the Co doc came in, he YELLED at me for my blood sugar being so high nad shoved a ADA diet in my face. When I saw him for follow up I felt lousey and losing 10 lbs a week. He did not check my blood sugar, despite having a meter in his office and again yelled at me for not following the diet.

I don't seem to be very insulin resistant either, but my pleas to get antibody tested fall on DEAF ears. I have also raised a possable thyroid issue twice in recent weeks also to no avail. I get cold, run a lower than average body temp and now loosing hair.. also falling on deaf ears as well.

I am at a HIGH RISK for autoimmune diabetes and thyroid.(CKD-3, & MS) plus was on thyroid med, not taken since 1971, but my TSH is in normal range. TSH from my research is NOT a very good test, kinda like testing only urine sugar for diabetes.

IMO most docs do NOT listen to their patients, they have their own priorities, not always in line with us or our bodies.

Gomer getting off soap box
Comment by Natalie ._c- on November 21, 2010 at 6:31pm
I've been diabetic for 19 years. Diet and exercise, then sulfonylureas didn't work, so I've been on insulin since 1994. I'm not obese and not insulin resistant, but I'm also not Type 1 -- had a coma in September, and it was not DKA. I relate better to Type 1's than to Type 2's in terms of how I manage my diabetes, but having found this group, I think the "orphan" category fits me best!
Comment by Kim on February 18, 2010 at 7:27pm
Well it sounds a little scary! I hope things will be ok- Take care.
Comment by JDavid on February 12, 2010 at 3:15pm
Well I am still here an OTHER diabetic or Type-O..so far.

Jan 26 2010 I was Dx'd with RRMS, relapsing remitting Multiple Sclerosis. I did FINALLY get my prisms updated of sorts. Wearing a trial pair with the change done in fresnel prisms and they seem great so far, hope to get them ground into the lenses in a month or two.

Now that I know there is another diease process going on responseable for some things previously blamed on diabetes, it makes logical sense.

Comment by Kim on February 10, 2010 at 10:16pm
Been gone for a while--how's you all been!
Comment by JDavid on September 4, 2009 at 8:56pm
Hi Fellow Orphans........

AS most of you know I started this group. I never quite fit any of the usual diabetes TYPE pigeon holes. My decades of dealing with teh D-Dragon has been wild and not quite typical. Recently I went to a new eye doc who told me my diplopia was NOT due to diabetes (maybe MS) and proceeded to tell me why. For decades everything got blamed on the D-dragon.

The new eye doc wanted nothing to do with checking/updating my glasses prisms, to correct my double vision. Now I may need to find a neuro-optlamologist specialist instead. Found I NEED a referral to see one adn made an appointment with a nurologist in my effort to get a referral.

Well the neuro requested records, some of which I already had copies. I already knew MS had been considered by other docs before, but never followed up on. I did some research and found that my MRI was almsot a text-book description of MS imaging features.

This week I now am to see my PCP about the possable MS issue a few days before I see the new neurologist about it. At the moment I am still in limbo with the MS issue, maybe I will get some answers soon. Since both type-1 diabetes and MS are autoimmune, there is a documented mutual risk of having both. IF that turns out to be the case, then it would explain many issues that have made my diabetes a bit unique.

The bottom line is I may get re-labeled as a type-1 (still a little a-typical) diabetic with MS.

FUNNY.. I started this group and now I may ???? soon become a non-orphan diabetic.......the wierdness never ceases..........lol for me anyhow.
IF and its still a big 'if', the MS is confirmed...will ya guys still welcome me here?

Comment by Susan K on August 6, 2009 at 7:46am
Katie - I had a very hard time for several months after my TP surgery with unexplained lows, particularly before I got my enzyme balance right. I can't conclusively say that the enzyme balance was to blame for the lows but it did seem that I had fewer lows, especially in the morning, after switching to Creon and increasing the amount I took with meals.

If you're not already a member, there is a yahoo group for TP diabetics that you may find very helpful:
Comment by Katie Zeller on August 5, 2009 at 11:45pm
V is having a bit of a difficult time with unexplained lows (and some highs). He doesn't have a pancreas (since May 20, 2009) so must take enzymes to digest food.

Does anyone else do this? Could the timing of the enzymes effect the way the insulin/carb ratio works?

For the record, we asked the docs who just waved it off in typical French fashion (the surgeon) or shrugged (the endo). Both sets of docs would just rather have him in hospital so they can control him rather than out on his own... living....

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