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Arrgy

Hi...My Diabetes nightmare

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Arrgy

Hi all. Nice to meet you. I'm Jason. I'm 57 with what I'm positive is LADA.

 

So I thought. My new Dr. doesn't

like that I have an opinion so he set off to prove me wrong.

First, a little background. Diabetes runs in the family, mothers side. Mom

was sure I had diabetes and tested me from 5 to 7 years old. No sign

of it in the 1950s. In my 30s, I knew something was wrong. Heart

palpitations while still and calm. Dizzyness with no reason diagnosed.

In my 40s I had that incurable thirst to find my glucose at 600.

Metformin for the next 10 years that put it under some control. Then

not. Byetta was prescribed and it worked well and I lost weight. Two

years later and it stopped working. Back to Metformin for 3 days.

Nothing. I was put on insulin and regained control. From all that I've

read, I have LADA, right? My Pancreas was taxed for as much insulin it

could make and then dropped below what oral medications could help.

My Dr. ran tests to prove I didn't have LADA/1.5.

Lactate 1.4

C-peptide serum 1.7

Glutamic acid decarboxylase AB <5.0

 

I complained of a lactic acid build up within 2 hours of work that

leaves me very sore the rest of the day. Also, a soreness in the

muscle along the left ribs that moved from front to back. This week,

that muscle soreness is growing to cover half of my upper left half

chest and my symptoms are exactly that of stiff-person syndrome(SPS). This

helps to confirm LADA. It's getting really bad. I'm losing sleep from

the soreness. The pain doesn't go away. It just moves about my back to

front. I also have new neuropathy sensation in the front area. An 8"

circle at the front left, lower ribs.

My young Dr. just canceled my insulin prescription. I'm to go on an

oral medication. I've already been there. What do you think? I'm

freaking out and feel like a prisoner of my intolerant Dr....

 

That was a letter I wrote, reaching out for help. It's 3 days later and I

have reluctantly, been taking Glyburide as he prescribed. Just like the

first time, pancreas taxing drugs don't work any more. For 3 days, I

have been running a b/g of 237 to 314. On a soup and chicken diet.

5%(?) carbs if you count the barley. I did 17u of humalog last night,

just to ease the damage to my body. SPS is slowly worsening.

 

Why are medical centers and their doctors so hostile? If I ask to see an

Endocrinologist and he refers me to one in the same medical center, will

I get fair and unbiased help or will s/he act in a way to protect one of his own?

Should I request some one out of town?

Because I keep such a close eye on my illness, I have been "branded" a

"self diagnoser". This is stressing me out bad, I've talked myself out of

the depression but I sure do feel alone. Any advice would be much appreciated.

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Arrgy
Hidden

Thought I should cross post this at the right forum...

 

Hi all. Nice to meet you. I'm Jason. I'm 57 with what I'm positive is LADA.

 

So I thought. My new Dr. doesn't

like that I have an opinion so he set off to prove me wrong.

First, a little background. Diabetes runs in the family, mothers side. Mom

was sure I had diabetes and tested me from 5 to 7 years old. No sign

of it in the 1950s. In my 30s, I knew something was wrong. Heart

palpitations while still and calm. Dizzyness with no reason diagnosed.

In my 40s I had that incurable thirst to find my glucose at 600.

Metformin for the next 10 years that put it under some control. Then

not. Byetta was prescribed and it worked well and I lost weight. Two

years later and it stopped working. Back to Metformin for 3 days.

Nothing. I was put on insulin and regained control. From all that I've

read, I have LADA, right? My Pancreas was taxed for as much insulin it

could make and then dropped below what oral medications could help.

My Dr. ran tests to prove I didn't have LADA/1.5.

Lactate 1.4

C-peptide serum 1.7

Glutamic acid decarboxylase AB <5.0

 

I complained of a lactic acid build up within 2 hours of work that

leaves me very sore the rest of the day. Also, a soreness in the

muscle along the left ribs that moved from front to back. This week,

that muscle soreness is growing to cover half of my upper left half

chest and my symptoms are exactly that of stiff-person syndrome(SPS). This

helps to confirm LADA. It's getting really bad. I'm losing sleep from

the soreness. The pain doesn't go away. It just moves about my back to

front. I also have new neuropathy sensation in the front area. An 8"

circle at the front left, lower ribs.

My young Dr. just canceled my insulin prescription. I'm to go on an

oral medication. I've already been there. What do you think? I'm

freaking out and feel like a prisoner of my intolerant Dr....

 

That was a letter I wrote, reaching out for help. It's 3 days later and I

have reluctantly, been taking Glyburide as he prescribed. Just like the

first time, pancreas taxing drugs don't work any more. For 3 days, I

have been running a b/g of 237 to 314. On a soup and chicken diet.

5%(?) carbs if you count the barley. I did 17u of humalog last night,

just to ease the damage to my body. SPS is slowly worsening.

 

Why are medical centers and their doctors so hostile? If I ask to see an

Endocrinologist and he refers me to one in the same medical center, will

I get fair and unbiased help or will s/he act in a way to protect one of his own?

Should I request some one out of town?

Because I keep such a close eye on my illness, I have been "branded" a

"self diagnoser". This is stressing me out bad, I've talked myself out of

the depression but I sure do feel alone. Any advice would be much appreciated.

 

I read that i can by insulin over the counter? Maybe I can unlock that ball & chain. lol

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NoraWI

Get a new doctor/endo who has no connection to the group you have been seeing. BTW, the GAD65 antibody test ceases to give a positive result as time goes by. That's because as your beta cells die off, the autoimmune attack lessens to an unmeasurable amount. So if you are at that point, there is little way to determine whether you are in effect LADA or T2. Insulin is the way to go no matter which you are, if nothing else works. Even T2s are now prescribed insulin to help control BGs. Running as high as you have been for a prolonged period of time is not good and asking for complications which you may or may not have already. I have never heard of the SPS syndrome but I suppose it could be yet another complication of diabetes.

 

Find a compatible, open minded health practitioner who will treat you without hostility nor be negative about your desire for self management. Many of us have been there and gone on to find a health practitioner who would work with us instead of trying to prove themselves right. That person might be found in other than an MD. Initially misdiagnosed as a T2 because of my age, after 2 years of struggle, I finally found a compatible and workable person, first in an endo, and later when he moved away, in a CDE (Certified Diabetes Educator) who is also a Nurse Practitioner and can prescribe. She helped me get a pump (through Medicare) and things are in good control now. A doctor who wants to impose his own will upon an unwilling patient cannot be effective!

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morrisma

Not quite sure why insulin script was cancelled. If that provides some control, the source is unimportant I would think. Good luck on finding a new doc. You may receive a quality survey from the practice you leave. Make sure you fill it out.

Mike

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foxl

C-peptide serum 1.7

Glutamic acid decarboxylase AB <5.0

 

I would in part agree with this doc and say NOT LADA, based on those numbers. That c-peptide is certainly NOT indicative of massive insulin resistance, either, however.

 

However: since when is there anything wrong with using insulin in Type 2? And, why GLYBURIDE? In a time when sulfonylurea use is being reconsidered due to beta cell burnout???

 

What do you eat? Are you eating lower-carb to control your blood sugars, and do you exercise? I certainly DO count barley, as I sure as all heck metabolize the starch in it, and rapidly! Are you controlling your weight?

 

I would be looking for a different doc. Even if you do not have LADA, he has proved nothing about his own understanding of diabetes.

 

I do have LADA, I got off Actos and Glimepiride, kept metformin and added insulin. And if you have Type 2, or a form of LADA, or some unknown type of D, there is no reason not to get off the multi-oral therapy and onto a low dose of insulin, that I know of.

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Arrgy

Does it matter that my C-Peptide was done without fasting or even being asked? That I still had levemir at work? That the range was 0.9 to 6.9 as to the 1.7? No GAD65?

 

Exercise with this SPS like symptoms? The ensuing pain is unbearable. Over weight? Yes. I feel like I'm closing in on death. I'll ask for a second opinion today at my SPS appointment. I have the B/G log for the Glyburide that he didn't ask for. It helps about 10%. I HAD to do insulin to get down from 200s/300s.

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Grunch

You need to stop obsessing with diagnosing yourself. It's not like having 1.5 would change anything. You need to take measures to control your condition and there's a good chance that will involve insulin considering the drugs you've been taking. If your doctor is not willing to help you control the condition you need to look for a different doctor like Linda said. But you have to stop insisting with that 1.5 stuff. Nothing in your history or your blood tests suggests 1.5. Just find a doctor that is willing to try different treatment options. I didn't understand if you are currently on metformin, but if you're not it would probably be a good idea to go back and stay on it.

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Arrgy

Hi Grunch

I was at the mayo clinic site looking up LADA C-peptide test. It mentioned to watch for SPS and pointed me to the GAD65 page which also warned of LADA patients getting SPS. I have symptoms of SPS, BAD! I'm in bad pain and can't sleep. I HAVE to obsess. My doctor cut off my insulin and my eyes are blurry. When I run out of my insulin, I'm screwed.

From what I've read, the C-Peptide test is null & void, having insulin in my system. That figures to elevate the 1.7 number from somewhere lower, right? Maybe a 0.6? I don't know. Can you be considered LADA without a C-peptide of 0.0? That's why I'm here but know this. I feel like this is an emergency situation, having a doctor repeating a test that failed to bring down my glucose from two years ago and cutting off insulin. Not to mention the severe memory loss from 10 years of Metformin that caused mild dementia in the evenings, and went away when I stopped it. Now I'm on a drug that doesn't control my glucose and causes more memory loss? No. This is an emergency.

 

Stiff-person syndrome, if this is what it is, is horrible. You want to spend half the day arching your back to relieve the steady spasm.

 

Here's my log for my new doctor. I HAD to use some of my insulin. What does it say, please...

 

Glyburide B/G log

 

3/16

b/g 132 105u levemir

3/17

8:00 am b/g 87 No food or Humalog

5:00pm b/g 197 Start one glyburide eat beef barley soup

7:00 b/g 284

8:00 b/g 296

9:00 b/g 227

10:15 b/g 174 eat salad

11:15pm b/g 143

 

3/18 Vision blurring, neuropathy worsening

7:00am b/g 164 coffee with a little sweet creamer

8:00 b/g 229

10:00 b/g 237

12:30pm b/g 237

2:30 b/g 194

4:00 one glyburide, eat chicken and salad

5:30 b/g 215

6:30 b/g 227

8:00 b/g 193 2oz peanuts

9:40 b/g 314

11:00 b/g 252 17u Humalog cheese and yogart

 

3/19

8:00am b/g 167 coffee

10:30 b/g 261

1:00pm b/g 210

5:00 b/g 180 Glyburide eat soup & roll

7:00 b/g 348

9:00 b/g 360 22u Humalog

11:00 b/g 89 eat cheese sandwich

 

3/20

8:00am b/g 185 coffee

10:00 b/g 235

1:00pm b/g 204

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Arrgy

Thank you Nora and Morris! My SPS appointment is today at 4:30. I'm scrambling to find out if i can see the Endo 60 mi. away so I can have my GP refer him. After 2= yrs of insulin and 6.0 to 6.5 A1c's, here's my log for 3 days of Glyburide...He didn't even ask I keep one. I'm headed for an 8.5+ lol

 

Glyburide B/G log

 

3/16

b/g 132 105u levemir

3/17

8:00 am b/g 87 No food or Humalog

5:00pm b/g 197 one glyburide eat beef barley soup

7:00 b/g 284

8:00 b/g 296

9:00 b/g 227

10:15 b/g 174 eat salad

11:15pm b/g 143

 

3/18 Vision blurring, neuropathy worsening

7:00am b/g 164 coffee with a little sweet creamer

8:00 b/g 229

10:00 b/g 237

12:30pm b/g 237

2:30 b/g 194

4:00 one glyburide, eat chicken and salad

5:30 b/g 215

6:30 b/g 227

8:00 b/g 193 2oz peanuts

9:40 b/g 314

11:00 b/g 252 17u Humalog cheese and yogart

 

3/19

8:00am b/g 167 coffee

10:30 b/g 261

1:00pm b/g 210

5:00 b/g 180 Glyburide eat soup & roll

7:00 b/g 348

9:00 b/g 360 22u Humalog

11:00 b/g 89 eat cheese sandwich

 

3/20

8:00am b/g 185 coffee

10:00 b/g 235

1:00pm b/g 204

 

Thanks for being nice and helpful, you guys! :)

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Peggy_TX

Keeping in mind that (1) I am not a doctor, (2) we only know what you tell us, (3) we all bring our own biases, from our own life experience (and lack thereof) ... Here are my observations/thoughts:

 

As a general rule, people seem to get better results when they focus on their SYMPTOMS and not on a specific diagnosis. As other have mentioned == what does it matter if you have 1.5, 2 or 7.3??? What you need is a health/diet/medical regime that gets your blood sugar under control. Period. There is nothing that indicates NOT prescribing insulin to T2s. If you respond well to insulin, your doctor should prescribe it or give you a MEDICAL reason why it's not appropriate for you. If that doesn't happen, you need a new doctor. Clearly you are diabetic and need to control your blood sugar, but arguing with your doctor about what TYPE you are is just not going anywhere helpful. You said "my young doctor just cancelled my insulin prescription" What reason did he give? Why did you agree? (I just can't imagine walking out of the doctor's office without a treatment plan I was willing to try, or clear direction on how to transfer my medical records to a new doctor...)

 

There isn't enough food on you diet list to feed my cat. And what's there, is sadly lacking in nutrients. Eat more food. Where are the vegetables??? (unless that "salad" is chock for of a LOT of variety.. which seems unlikely...) Where's the REST of your protein???

 

Metformin doesn't cause dementia.

 

It sounds like you are in a lot of pain, and your blood sugar is all over the place. Hopefully you can get some advice here to get you on a better track!!

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Arrgy

"You said "my young doctor just cancelled my insulin prescription" What reason did he give? Why did you agree?"

 

He didn't give a reason other than to try Glyburide. I didn't agree. I simply said, I think I have LADA. I ate like a bird to get the best results from the Glyburide. Not good, eh? lol

 

Many metformin users have complained of loss of memory. Maybe not you but I got to a point of mild dementia in the shower at night. I couldn't remember what part of the process I was at. When I quit Metformin, that pattern disappeared.

metformin memory loss - Bing

 

Thanks for your comments.

I don't know why my about me doesn't post...

 

14 yrs Type 2, 2 years 1.5?

10 yrs. metformin

2 years Byetta

last 2 years 20 humalog/105 Levemir

3 days Glyburide

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Grunch
From what I've read, the C-Peptide test is null & void, having insulin in my system. That figures to elevate the 1.7 number from somewhere lower, right? Maybe a 0.6? I don't know. Can you be considered LADA without a C-peptide of 0.0?

 

The injected insulin figures to possibly lower your c-peptide, not elevate it. So if you tested at 1.7, your natural c-peptide without injected insulin is expected to be 1.7 or higher.

 

 

Stiff-person syndrome, if this is what it is, is horrible. You want to spend half the day arching your back to relieve the steady spasm.

 

This is what wikipedia says on SPS and anti-GAD:

 

GAD antibodies cannot be the sole cause, as most Type I diabetics possess anti-GAD antibodies, yet the frequency of SPS among Type I diabetics is 1 in 10,000. Approximately 60% of patients diagnosed with SPS have anti-GAD antibodies present, while 40% do not and therefore rely on clinical testing for diagnosis.

 

You tested negative for anti-GAD so there is absolutely no reason for you to think you have LADA instead of type 2 D.

 

Have you been diagnosed with SPS by a doctor or did you self diagnose?

 

When you were on metformin did you have good blood sugar control?

 

This forum is a good place for you to find advice on how to better control your BG. But first you need to accept that you have t2d and that you need to approach your blood sugar control in an objective and practical manner. I would reconsider the use of metformin. Maybe it wasn't really causing dementia as you thought. If you don't go back on met I would go on insulin and for that you need to find a doctor who is willing to give you that treatment option. You will be taken more seriously by doctors if you stop trying to push the LADA diagnosis. Is your doctor an endocrinologist or a GP? You should see an endo.

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Arrgy

I did it! When my doctor refused to give me my insulin back, I said to him, I'm not trying to self diagnose but you have to work with me man! We have to work together! Then I explained the damage I was having and feeling in these last 4 days. He looked surprised. like he had all year to figure me out. I told him about you two telling me that if he didn't give me insulin, I was going to have to go some where that I could. I picked up the log again and pointed out what the numbers meant. I told him I lost 8 pounds trying to make it work. I said, I don't blame you for trying but the food to b/g numbers couldn't work, as much as I wish they could. I love the idea of losing weight.

He sat down and said, okay, i'll give you your insulin back. I patted him on the back. He read my prints from the Mayo clinic, on stiff- person syndrome and prescribed me the muscle relaxers they suggested. He patted me on the back and smiled.

There's a whole new can of worms. The usual people that get SPS have either two kinds of encephalitis or people with LADA. It started as a sharp pain in my lower rib, front. It comes with a neuropathy sensation. first it moved along the rib to the mack. Then it morphs into a 12" round dull pain when it moves up and along the back rib cage. A few more days and it jumps to another area towards the center. Then back one step. then back over... Towards the evening, the whole process reverses back to the small area at the front, waiting yo do it all over again. I wake up at 3 am and that spot is raging pain again. 2-3 hours later, I'm forced out of bed. I've had that 2 days in a row,. A day off (?) and the last 3 days and is it a drag! In closing, am I LADA? Likely.

A side note: I was born with major jaundice and had a full blood transfusion from my Mom. She knew!

 

Thanks again, you wonderful people! You helped to make my life a lot easier.

 

How do I get my history to post?

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Arrgy
Hidden

What happened to that huge thread I just spent the last half hour typing out?

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Jan B

Hi Arrgy and welcome!

 

After 15 posts, you will be able to see the option where you can add a signature line(s). I'm glad your appointment went fairly well today. You are doing a good job insisting on being treated right. It can be a fight for sure -- keep it up until you are satisfied!

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Arrgy

See my reply at the type one forum.

 

The injected insulin figures to possibly lower your c-peptide, not elevate it. So if you tested at 1.7, your natural c-peptide without injected insulin is expected to be 1.7 or higher.

 

The way I understood it, if you're a 0.0, your pancreas can't put out any insulin. If you're on insulin, the test will think the pancreas is working better than it is...No?

This is what wikipedia says on SPS and anti-GAD:

 

GD65S/81596 Overview: Glutamic Acid Decarboxylase (GAD65) Antibody Assay, Serum

 

LADA is one of a few causes of SPS.

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Grunch
The way I understood it, if you're a 0.0, your pancreas can't put out any insulin. If you're on insulin, the test will think the pancreas is working better than it is...No?

 

No, if you produce 0 insulin the result of the c-peptide test will be 0. Injected insulin doesn't contain c-peptide.

 

 

That doesn't say LADA causes SPS, it just says that both people with t1D and SPS can have anti-GAD.

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Peggy_TX

Happy to hear that you have a productive appointment with your doctor, and are able to get back on your insulin regime.

Let us know your progress as you get back to the routine you wanted...... What are you food/insulin goals? Do you plan to go LC? LCHF? Moderate carb? Hoping you can get back to a well rounded dietary plan, with good glucose control ASAP!

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Arrgy

Grunch,

I can't find the link without a long search but what I read was that only in LADA, does it effect the upper extremities. So, if I have SPS and it looks like I do, I most likely have LADA. I'm tired. It's been one **** of a two weeks. Here's another of the dots I've connected.

GD65S/81596 Overview: Glutamic Acid Decarboxylase (GAD65) Antibody Assay, Serum

 

Thanks, Peggy!:)

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Arrgy

After promising me insulin, the pharmacist calls to say they have the script but can't fill it because it comes with an unchanged rediagnosis of type 2 diabetes. Arrrrrgh! I call the dr. and the receptionist snarls at me, y o u w e r e m i s d i a g n o s e d

w i t h t y p e 1 d i a b e t e s! Like I had to listen up buddy! So instead of fessing up and change the diagnoses, he scrambles to find an insulin he can order. Humulin N. Time released, 16 hour curve, pet insulin.

 

Question: If all type 2 diabetes drugs fail to control glucose and insulin does, what type of diabetes do I have? :confused:

 

Clue: The stiff-person syndrome is better with the prescribed muscle relaxers.

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Grunch

According to all the information you posted you have type 2 diabetes, and the doctor should be able to prescribe any kind of insulin. Maybe the problem is some specific rule from your insurance which means they won't pay for it, but even then you should still be able to get any insulin if you pay out of pocket.

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