Possible Diabetic Neuropathy with my 9 yr daughter

Does anyone have any experience with Diabetic Neuropathy? I received a call from my ENDO saying her levels were high and she wants another urine sample.

My daughter has been a Type 1 for 2 years. She also has hypothyroidism and celliac. I feel like we’ve coped with so much, but now this???

hi @daniellepidgeon

~I am not a doctor~

Neuropathy is a form of nerve damage. In a person with T1, it can occur from an autoimmune attack or from prolonged high blood sugar. I have no idea about what levels the endo was talking about, but high blood sugar in blood or urine doesn’t diagnose neuropathy.

T1, celiac, and hypothyroid are all autoimmune related - your best place to get information is directly from her endocrinologist and also from a second opinion, doctors can give you a referral to a 2nd opinion if you ask them and fyi - if a doctor gets offended by the request it is a strong sign you should find a new doctor.

good luck!

Thanks for responding Joe. Were going to do another urine sample and depending on the results we’ll be referred to a neurologist.

I’m also leaning toward the 2nd opinion. I think it’s time since my daughter has been a Type 1 for two years. I’m very involved in my daughters care and feel like we manage her T1D and other autoimmune related diseases very well. This recent suggestion of Neuropathy makes me feel like it’s my fault, even though I know it’s not.

Thanks again for response and take care!

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I’m not a doctor, but I would guess it isn’t neuropathy after only 2 years. You might want to get another opinion. I had an endocrinologist at Northwestern Memorial in Chicago tell me that I had neuropathy a couple years after my kids were born. I had been a TID for 26 years. He didn’t do any tests. I had numbness and tingling in my hands and feet. I got a second opinion from an endocrinologist at University of Chicago Hospital. After several neurological tests I was diagnosed with MS. My hgb a1c wasn’t terrible - around 6.5 - and believe it or not, I felt vindicated! I still think that TID is worse than MS. We’ll see what the future holds.

Wait…do you mean kidney complications?

My daughters endo says neuropathy
She’s only 9 and has had T1 for 2 years and we have pretty good control or so I thought.
We’re going to do another urine test and then she’ll refer us to a neurologist if the results are the same. I think I’m going to get a second opinion. I feel like it’s time. Thank you for responding! Take care

Hi Daniel @daniellepidgeon,
Are you sure that your daughter’s endocrinologist didn’t say nephrology and that your daughter might be referred to a nephrologist? It is easy to “hear” these two conditions and specialities as one.

I’m not a doctor, but I’ve never heard or neurology being identified by a urine sample. On the other hand, I provide a urine sample every year to have creatine levels checked to see if I’m venturing into nephrology conditions.

Which ever her need, I hope all goes well, and please do not lay blame on yourself or on her; you are doing your best.

Hi Danielle,
I’m also not a doctor, but I’ve had diabetes for 24 years, celiac for 5, and hypothyroidism for somewhere in between the two. I agree with Dennis; I have no idea how a urine test would diagnose neuropathy. Is your daughter experiencing any pain or numbness in her hands and feet? Do you have any reason to think she has neuropathy other than her “levels” being high?
Nephropathy (kidney failure), on the other hand, is diagnosed via a urine test and should be checked annually. I’ve attached google search results on how to diagnose both conditions. They do sound a lot alike.
It also seems odd for your daughter to have developed either condition after only two years, especially if you’ve been able to keep her A1c down (below 8). I’d confirm what your doctor told you and then ask for a 2nd opinion.
I hope everything works out! And remember that none of this is your fault!

Remember too that a person does not have to have diabetes to be affected by either Nephropathy or Neuropathy in its in its many forms.
When I was in a corporate risk management department in the 80s and 90s, the most frequent “elective surgery” was for a form of neuropathy - and I’m not aware that diabetes caused the neuropathy because if it did, worker’s compensation would not have paid.
Bare in mind, that we should not blame our diabetes management for everything that goes wrong with our bodies.