Having trouble with diagnosis


#1

I am a 41 year old recently experiencing gradual loss of energy over the past year. two months ago it became significant as a weakness in my arms and legs that would come and go, especially as I was jogging. A routine bloodtest showed a fasting glucose of 136. A second test - glucose 2 hour test on a different day showed 88 before and after. It was dismissed, but I started to feel acutely dizzy or tired after some meals. Note, I was eating less than 20g carbs/meal and gluten free. The GAD autoantibody test came back at 26 (high). All other tests were normal or borderline. I started testing my glucose levels and daily they range between 100-150. Rarely do they do below. Sometimes they go down hour after meals but most times only slightly.

My doc is dragging on and on and I feel barely functional. Still waiting on C peptide results. So I suspect LADA, but I want to know from others…should I expect to get some kind of insulin or medicine that will stabalize the extreme weakness feelings? The endo doctor seems a little unsure about the weakness feeling and advised seeing a rheumatologist. I guess I am looking to know if anyone else experienced what I am feeling. I know I am super sensitive to side effects of medications and changes in my body, so I am wondering if this is just my body’s way of screaming that something is wrong?


#2

Were your thyroid levels tested?


#3

Yes, and normal.


#4

Have you had any dopplers to test the blood flow in your extremities?


#5

No…

I guess to give a little more info I could say that I am 5’3" and 110 lbs. Up until recently I was a decent half marathon runner. I’ve lost 12 lbs over the past 2 months without trying. I have periods of excessive thirst, symptomatic of diabetes. The feelings of weakness come and go. They don’t seem to correspond with glucose readings in any consistent way which is confusing. I had a full thyroid panel, but had thought a while ago that something fishy was going on hormonally. All tests of that nature have come back normal, though.


#6

My understanding is an abnormal GAD65 (high) + low C-Peptide are signs of LADA. There are several other antibodies to check for but the most common is GAD65 and IA-2. It is also possible to be a type 1 without any positive antibody test. The theory being they don’t yet know all the antibodies to test for, just several common ones.

It’s hard to say but you might be catching your type 1 early on before you’ve lost too many beta cells. If that’s the case you might be able to slow down the loss of beta cells.

This all just happened to me as of May this year. I’ve started medication and sharply reduced my carb intake to hopefully slow down my beta cell loss.


#7

Unexplained Weight loss, high gad, thirst, all point to something going on. Some people can be very sensitive to swinging blood sugar levels, even if they are apparently quite close to normal. It would be interesting to know what would happen to your blood sugar if you tried to eat higher amounts of carbs. In fact, this might be a way to push the point, and get diagnosed.

Are you eating enough protein? Calories? Fat? When eating low carb, you must get plenty of fat and protein? Please excuse me if you are already getting plenty. You are pretty light weight and that does make your losing weight without meaning to a bit concerning…

Insulin is the hormone that allows your body to use the energy from the food that you eat. IF your insulin levels are too low, effectively you can starve, even in the land of plenty… it may be that a low dose of insulin may do wonders for you in terms of returning your energy levels… just a thought…

Please do push for more testing. Would you consider a glucose tolerance test (with insulin and glucose being tested?). A second opinion? A good endo would hopefully realise that a high GAD means you are type 1 (lada is effectively still type 1), and the treatment should be insulin). Possibly low dose… but still insulin…


#8

Another thought. Are you on statin drugs? Many people who take statin drugs report weakness of arms and legs; can be severe and progressive… They can also develop diabetes…


#9

I’m sorry you are feeling so poorly. A potential diabetes diagnosis can be confusing and confounding, even to many MD’s. My understanding is that positive GAD=Lada. (You should search on this forum for posts by Melitta, who appears an expert in Lada.) I certainly do not qualify as an expert! But I can tell you that your symptoms are similar to what mine were when I was diagnosed with Lada: losing weight (unwanted and unnecessary), extreme thirst and fatigue. (I also had some tingling in my fingers.) My endo says the fatigue was due to the body being unable to utilize calories (due to lack of insulin). Hence, the body is feeding on itself for energy (the weight loss). The c peptide test can assess if you are making insulin. Once I began insulin the fatigue greatly subsided and my weight stabilized.

I hope this information is helpful and wish you the best!


#10

I’m grateful for the responses here and the confirmation that I may be on to something even though my endo is pushing me off. I am going for a second opinion. She is disregarding the high GAD result and telling me to seek rheumatology help. She’s basing her comment on the fasting glucose test being 101 and not high enough to warrant diabetes; however, I have been taking my fasting glucose reading each morning for over a week and it ranges from 105 to 136. It almost seems that my body sporadically produces more amounts of insulin than at other times. Would that make sense? Sorry…I know self diagnosis isn’t the best but I am frustrated with doctors not looking harder at symptoms and what not. Going for a second opinion this week…keep talking to me!


#11

Fasting glucose is not the most accurate of tests, particularly in early or developing diabetes, because your body has had all night with no food on board to try to play catch up with blood sugar levels. Have you tested blood sugar levels 60 minutes after eating a meal with a reasonable amount of carbs? How are they?


#12

Since I’ve been testing before and 60 mins after meals I have been keeping carbs low, but I did get a 147 after a small amount of kidney bean and meat chili with avacado. That seemed like a lot to me for low carb…I might try it but am a little afraid at this point…


#13

Are you afraid of getting high BG, or something else?

Short periods of BG over 140 are not dangerous, and may be what you need to get proper diagnosis.

I was diagnosed 50+ years ago, and the first 20 years we didn’t have home BG testing. But with urine glucose testing positive, it meant BG was at least over ~180. And my urine was positive LOTS !!

If you have slow onset LADA, and are active and eat low carb, I understand why the doctors are hesitant to diagnose. Some doctors are better than others.

Get a BG meter, test before and after higher carb meals, and you’ll probably have data the doctor considers evidence of requiring diagnosis/treatment sooner.
If your BG is not high after high carb meals, then it shows your pancreas is still producing significant insulin, and other things may be causing your symptoms.


#14

LADA’s can have readings all over the place, because you are still making insulin in various amounts needed. Well type 1’s in general can have readings all over the place. Your body makes it instantly as needed in the proper amounts. Type 1’s need insulin that takes longer to work than naturally producing and you have to try to judge how much you need which can vary person to person. And an early LADA will still make some and who knows how much when? But a LADA has to take insulin eventually.

I caught my sugar rising in the am when it was 115 in the morning, my doctor dismissed it as a fluctuation. I asked about type 1, but my A1c was below 6 so I must be okay right? It wasn’t until I started waking up in the 180’s they decided something was going on and started me on medications. I then asked my now new doctor if I could be type 1 and she said no, because the medications wouldn’t work at all if you were (wrong obviously). She sent me to an endo who wanted me to again try the medications that had made me sick. I asked again if I could be type 1 as I had an uncle that had died from type 1 diabetes, he told me no and never bothered to test me. I refused to go back to him, I wasn’t going to go back on medications that had made me sick.

I switched doctors to an internist and the new doc added fast acting insulin and I thrived and when the group hired a new endo she sent me to her, who automatically tested me for the antibodies without me even asking or saying anything. Positive for LADA and it took 10 years to get the proper diagnosis. What a difference in doctors!

I have typed this story many times because it seems to be a prevalent problem, misdiagnosis for LADA’s. Luckily I was on some kind of insulin fairly early as medications had made me sick.

It is more common for type 1’s to have a few other autoimmune problems, celiac disease, thyroid I think are the most common. So you could be a LADA and have another autoimmune problems too.

But my first endo, misdiagnose, my first 2 doctors, misdiagnose. Never even tested me, even though it ran in my family. Get that 2nd opinion or even a third. You already have a high GAD level. And just because they are an endo doesn’t mean they are a good endo.


#15

You sound the exact same as me. I don’t know how to link you to my original posts. The Extreme exhaustion was killing me! I will write more, but I have to charge my phone. I read your post and it struck home so I wanted to write you a quick response. Insulin saved my life. I felt better immediately (24hrs).


#16

I saw the second endo doctor today and he is not seeing my issues as LADA. He says my glucose levels are fine and and I am producing insulin. I don’t fit the bill of any of the neuropathy issues also connected to a high GAD result. He is trying a urine test to see if there is any glucose in urine and then testing for some other rare diseases. My arm and leg weakness comes and goes and is not consistent with blood sugar so I have to concede that maybe there’s something else going on. He is doing some other tests related to frequent thirst too.


#17

KW13, don’t give up. Do keep testing blood sugars and recording the results!
Get these next test results. If you don’t get answers you need to keep looking.

I personally am not convinced that the GAD results (and LADA diabetes as at least part of the picture) are not relevant. Did he test c-peptide and blood glucose at the same time? Were they both normal too? [Btw. Low or normal c-peptide and low blood sugar don’t tell you anything].

Have you been referred to a rheumatologist? They will at least test for autoimmune things?


#18

Thanks…C-peptide was normal and hba1c was 5. I agreed that my on and off muscle weakness didn’t exactly coincide with high or low glucose readings. The thirst and amount of water I want to drink might be symptomatic of something else he says. I have one more urine glucose test to do. I do see a rheumatologist next week. The endo is looking into parathyroid, human growth deficiency, too much calcium in blood, etc.


#19

Good luck! i hope you get to the bottom of it soon!


#20

I would recommend relying upon yourself for diagnosis, primarily. Clinicians are almost all ignorant of what occurs in the transition from 100% to 20% beta-cell function. Clearcut diagnosis of frank diabetes does not occur until 80% of beta-cell function and insulin granulation is lost. This is when polyuria, polydipsia (which you report) and extreme blood-glucose dysregulation occurs. Clinical guidelines will not allow diagnosis before this.
You have a one-time opportunity to maintain near-normal islet function for life, if you indeed are an early T1D. Adult T1DM is generally slower to progress than juvenile, as you probably know.
If I were you I would get an Abbott meter that uses the Freestyle Lite reagent strips – this is the only one on the market with adequate accuracy in the normal BG range. You can give yourself an oral glucose tolerance test using this, keeping in mind that the capillary BG will lag serum glucose by ~ 1/2 hour. If 2-hour BG is > 140mg/dL this confirms early diabetes IMO. 200mg/dL or more would confirm overt/frank diabetes. I would strongly recommend measuring at 1 hour (really, 1-1/2 hours after ingestion of dextrose bolus, to account for lag) also. This reading is likely to be higher than the 2-hour reading, and I would interpret a reading of >200mg/dL at one hour as early diabetes also.
Don’t rely entirely upon MD-prescribed labwork. If you think you may be an early T1D I recommend eliminating all carb’s in the diet and starting bolus insulin (with meals). Human insulin (Regular) is available at Walmart over-the-counter in many or most states.
Richard K. Bernstein is a good resource for info if you are not already familiar – his website is http://www.diabetes-book.com/ .
You can continue to regularly monitor yourself with the home OGTT indefinitely. I would strongly advise this until and unless all symptoms that you have reported are eliminated. It may alter your quality of life from now on, and allow you to continue with little to no insulin after an initial limited period of therapy, if you are indeed diabetic, preserving many beta cells.
I would also recommend eliminating all dairy foods, and all plant foods if possible. These are associated with the autoimmunity of T1DM.