Is this mental or the effects of the disease?

Mental and Emotional Wellness
1

I have a problem that has been plaguing since before Mom’s death in October 2015, but it has gotten worse since her death and I think this group is the only ones who can help me.

After my diagnosis of diabetes in August 2013, the original endo got upset with me because I was not able to tolerate metformin. To say the least he didn’t have the best side matter and he had been my mom’s doctor. Before she even passed we split the sheets.

The second endo had a chip on her shoulder when I told her I had to exclude carbs from my diet if I wanted to have decent numbers.she said that wasn’t true. She prescribed Januvia which caused me to gain weight and show symptoms of heart failure that ticked off my cardiologist and rheumatologist.

My third endo took me off all diabetes drugs and let me try diet and exercise for a while. I lost the weight I gained but my sugars stayed consistent. Now she’s prescribed Trulicity and I’m having upper left abdominal pain, diaherra, and my sugars are all over the place.

Long story short though is this. My maternal grandfather was started on insulin immediately. He couldn’t take any pills, he couldn’t eat or drink anything diet or artificially sweetened. My mother went through the gambit and then they decided to out her on insulin…she went through sadness and mood swings and such.

That’s what I’m feeling now. I just feel like myself. I go through the motions of life but I feel like I’m having an out of body experience. People I know say my personality has changed. I’m not the happy Kate they always knew and I’m irritable and snappy. But I don’t mean to be. I was in target yesterday, and for a moment I got hot, queasy and sick to my stomach. I had to focus myself. Got myself back to the front and check out. When i got home and check my blood sugar it was 158…it had jumped from 108 in like 45 minutes?

Yesterday was my RA infusion and I was so sick last night. When i went to bed my sugars was 185 at 8:30 pm and at midnight I awoke sick and checked it was 215 and I had diaherra. But my sugars usually run high after my infusions, its just now my sugars are staying high all the time…over night and through out the day. This morning it was back down to 110 so I guess the Trulicity got it under control but I just don’t know about how I feel. Will I ever feel like myself again?

2

What was the infusion medication? I have had various degrees of high blood sugars following infusions. The worst is Rituxan which contains steroid. As you may know steroids elevate blood sugar and the infused version can be difficult. However, my highest post Rituxan Blood sugar has been around 600.

Remicade has a small reported outcome cohort with increased blood sugar with longer term use.

3

Remicade. I’ve been on it now for five years. I’ve failed all biologics except rituxan, that’s my last option after remicade. My CRP is still high which puzzles the doctors, but my SED rate has come down.

I felt great for a couple of days after my first Trulicity shot but then felt crummy again.

4

I use rituxan and it is awful on blood sugar post infusion. Since Rituxan contains a heavy dose of steroid it blasts my blood sugar up by several hundred points. I usually end up around 600 then it declines over the next 36 hours and levels out after that. I really like RItuxan (despite the terrible post infusion), I like it because it works. 72 hours of hell is worth it to me.

5

I really don’t think the weird feelings I’m feeling us due to my RA or my infusion per se. I’ve been feeling this way a while, but it’s not getting better.

After the pills bombed, I had been trying to control mg diabetes strictly through dirt snd excerise but my A1C was not budging and BGs were fluctuating with the fasting numbers steadily climbing.

I felt great after the first Trulicity shot for the first two days, but then I started having upper left abdominal pain. I had already been diagnosed with GERD and hiatal hernia several years ago that I successfully treated. With each shot the pain has continued and my BGs at first were good, but they are now back to were they originally started.

Some Trulicity support groups say it takes six weeks to show improvement but I’m concerned about still feeling irritable, constantly thirsty, extremely tired, constantly peeing, and fatigued. I’m not hungry and for me with my sugars high I’m not hungry—just thirsty, peeling, irritable and tired.

6

It sounds like the Trulicity isn’t working for you. Are you type 1 or type 2? If you are misdiagnosed as type 2 then that could be part of your problem. In fact since you have RA then you are more likely to have another autoimmune disease which type 1 is but type 2 isn’t. The symptoms you’ve described regarding BG’s, irritability, thirst, and tiredness could be slow onset of type 1,especially since diet and exercise weren’t doing any good. Just something you might want to look into.

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7

Firenza took the words right out of my mouth! If the T2 medications don’t work for you and you have RA, an autoimmune condition, then you are very likely a slow onset T1 and should be on insulin. Anyway, whether you are T1 or T2, when other medication doesn’t work, insulin is a go to in order to control your high BGs. Of course, cutting down on carbs is also a good idea in addition to insulin because that will reduce the insulin doses you need. Have you been tested for auto-antibodies such as GAD65? There are other as well.

8

No, I’ve never been tested for auto-antibodies. I removed carbs when I was trying to do just the diet and exercise without any medications. I do not eat any breads or complex carbs. My 2nd endo got angry with me but if I ate carbs I would get sick and my sugars would be even higher. She left the practice, and my 3rd endo hasn’t said anything about me not eating carbs.

Last week I woke up to a low–65 but I couldn’t feel it. Last night I checked my bedtime BG and it was 149. I’m bouncing all over the place. I don’t feel my lows and highs anymore and I live alone, so it frightens me a little.

I’m always tired, and I could just sleep forever. I take a 64 oz. water growler with me to work every day and I drank it by the end of the work day. Then when I get home I drink another 2 or 3 16 oz. of water.

I crave water more than food. I’m never hungry, but extremely thirsty all the time and tired, no energy. Thankfully my office is next to the restroom.

9

Really no downside to the standard suite of D related antibody testing. If it was me, I would do thyroid testing as well.

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10

Oh, I already have my thyroid problem. Was diagnosed with Graves disease at 14. Doctors were baffled as to the dosage of radioactive iodine to give me—first dosage didn’t work. Given second dosage resulted in me being hypothyroid. So I’ve take Levothyroxine for the past 33 years.

Kind of a running joke for me—I’m a collector of autoimmune disease/conditions–thyroid, allergies (food and environmental), rheumatoid arthritis, fibromyalgia, and now diabetes; but all these also run in my family (one side or the other).

11

Given that, I would agree with @Willow4 and double down on the suggestion for D/T1 antibody testing as well as the thyroid testing.

Thyroid testing (as I am sure you are aware) is not only for diagnosis but also useful to help in deciding when medication dosage should be altered.

1 Like
12

Kate25

January 10

No, I’ve never been tested for auto-antibodies. I removed carbs when I
was trying to do just the diet and exercise without any medications. I do
not eat any breads or complex carbs. My 2nd endo got angry with me but if
I ate carbs I would get sick and my sugars would be even higher. She left
the practice, and my 3rd endo hasn’t said anything about me not eating
carbs.

Last week I woke up to a low–“65 but I couldn’t feel it. Last night I
checked my bedtime BG and it was 149. I’m bouncing all over the place.
I don’t feel my lows and highs anymore and I live alone, so it
frightens me a little.

I’m always tired, and I could just sleep forever. I take a 64 oz. water
growler with me to work every day and I drank it by the end of the work
day. Then when I get home I drink another 2 or 3 16 oz. of
water.

I crave water more than food. I’m never hungry, but extremely thirsty
all the time and tired, no energy. Thankfully my office is next to the
restroom.


Visit Topic or reply to this email to respond.

Kate, you are thirsty because your diabetes is so
uncontrolled. I believe you belong on insulin. You would find it almost
miraculous how it brings your numbers down. Glad you discarded that
doctor’s instruction to eat more carbs. That was like telling someone
allergic to eggs to eat more eggs. Even the ADA is backing down on its
recommendations for a carby diet.

In Reply To

Willow4

January 10

Firenza took the words right out of my mouth! If the T2 medications
don’t work for you and you have RA, an autoimmune condition, then you
are very likely a slow onset T1 and should be on insulin. Anyway, whether
you are T1 or T2, when other medication doesn’t work, insulin is a go
to in order to con…

13

Thank you all for the feedback. My current endo #3 told me to contact her if I had any problems with the Trulicity, and I’m phoning her now to let her know that I am having issues.

I visited my aunt and uncle over the holidays and drank so much water until they gave me two gallons of water to put in my bedroom. So embarrassing. I still ended up drinking one more gallon… :frowning:

I’m not accustomed to any starches and my aunt prepared macaroni and cheese, stuffing, cabbage, and turkey for the Noon Christmas meal. Well, you all know what happened next I promptly went to sleep and didn’t wake up until the next morning.

I felt lousy the entire visit because I’m not used to starchy foods. The only time I felt a little perky was when I was able to grab an apple or eat some nuts.

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14

Any grains in any form (breads, pasta, etc.) or fruits or root veggies will raise your BGs. And you have no tool to combat that so the body shuts down and you fall asleep. Very dangerous as you are skirting DKA. That’s when your blood becomes acidified with high glucose and no insulin to lower it. Please ask your doctor to do the antibody testing and, in the meantime, prescribe some insulin. Some say that a T1/T2 diagnosis is not important. I strenuously disagree with that. A correct diagnosis is important because it leads to the correct treatment. Incredibly, there are still doctors who think that anyone over the age of 18 cannot possibly have “juvenile diabetes.” Many are still being misdiagnosed today.

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15

On a side note… do you track macros when you eat? There are a lot of people that cut soda, bread, and sugar from their diets and think they’re eating low-carb, but are actually eating a fair number (from root veggies, pastas, in prepared foods, etc.). I’ve personally found that using something like My Fitness Pal (app and website) to track what I eat, how much I eat, and what the composition is to be useful in choosing what I eat.

Also, considering you’ve already been diagnosed with Graves and RA, I, like others, think that antibody testing would be well worth it in your case. Slow-onset LADA is very often confused with Type 2, and it’s important to understand the difference in the diseases (and the progressions) as soon as possible after diagnosis. Not all LADA patients are put immediately on insulin therapy (I’m not, for example), but it’s becoming the standard approach at this point in the US.

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16

David, thanks for the information. No, I do not track with an app or anything. I just try to stay with green veggies and proteins (eggs, chicken, milk).

I’ve just based it on what my mom and grandfather did in the past. My grandfather was on the very old exchange program, and my mom was on the ADA list; however, her endo was the one who took her off of all starches.

Both her parents were diabetics, but only her dad was unable to eat any starches (pastas, bread, root veggies, prepared foods, sugar free foods). Also he was your typical Type 1 (though labeled type 2) who had to test for ketones and test (blood and urine) in the middle of the night. Her mom was your standard Type 2 and was able to eat cookies, pudding, candy with moderation.

I’ve fought hard to stay off medications and work with diet and exercise. Metformin and Metformin ER made me extremely sick. Januvia also made me sick and caused body swelling and heart palpitations. I lost 45 pounds as soon as I stopped taking the Januvia. None of them reduced my A1C which continues to fluctuate between 6.5 to 7.1. The highest it’s ever been is 7.5.

A couple of years ago, my rheumy suggested I see an endo who is a friend of his, but he’s always booked solid; so, I went to see another endo who was in the medical center in our downtown area for a second opinion. He’s very hard to book an appointment. He suggested that I should be on insulin as needed. Test, and when my sugar is high, give insulin, as long as it’s within a certain range, no insulin is needed.

I thought with the weight loss (after the Januvia) that my BGs would go back in range, but they haven’t. My aunt (my mom’s sister) has had two knee replacements and now her blood sugars are back in range and no longer needs her diabetes pills…apparently she’s not even pre-diabetic. She getting ready to have knee replacement surgery now. But then again, she was diagnosed just recently and in her 70s.

My mom was diagnosed in her early 40s and I’m following in those same footsteps. Mom was not able to take pills and had to go straight to shots like her dad. So maybe the family is divided, I don’t know.

17

This sounds very much like someone who has LADA, or at least like myself. I was also diagnosed Type 2 at 40. I didn’t have a lot of weight to lose (wasn’t overweight), but I lost weight anyways (and unintentionally). I was able to stabilize my blood sugars by doing a LOT of exercise and radically cutting my carbohydrate intake (I started by cutting to less than 30g of digestible carbohydrate per day). I also took Metformin XR, even though it causes me terrible GI tract issues.

I got tested for antibodies because I was only able to maintain a decent A1c with very severe dietary restrictions, and it just seemed “odd.” Turns out, even though I presented like a Type 2, I’m actually Type 1. My grandmother, youngest brother, and great-grandmother were also Type 1. The point being…it’s pretty easy to get the “wrong” diagnosis, and it’s not difficult (or expensive) to ask for the tests that are at least semi-conclusive. There is no harm in knowing, right?

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18

David, YES! I am where you were. I have cut my carb intake and there is nothing left to cut. The only way my sugars don’t elevate is if I don’t eat a meal, and I have done that before. Oh, the Metformin (both) was absolutely horrible.

I think I will approach my endo about the testing, this endo seems very reasonable and she was the one who suggested the Trulicity because I was still going to try to keep plugging away at the diet and exercise.

I didn’t eat anything for Thanksgiving at all and my BGs were still the same. She felt bad for me. :disappointed:

Now with the Trulicity I’m yo-yoing. :roll_eyes:

Thank you all again for your help and support. Makes me feel good to know my irritability, moods, and exhaustion are tied to my diabetes as well. The first day of Trulicity I felt great and the second day onward I felt lousy…it was like a glimmer of hope that was snatched away at the last minute. :cry:

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