Nicholas Davis4
Active Member
106 messages
joined Mar 2023
47 years old, diagnosed with SLE and APL syndrome. Currently taking Andol100, propranolol, Lamictal for TN, and Advil as needed.
The SLE is currently inactive.
About a year and a half ago, I had subacute thyroiditis.
While on Medrol, I dealt with menstrual irregularities and heavy bleeding—I actually had to have steroid myopathy treated because of the Medrol. About two years ago, after stopping the steroids, everything returned to normal.
That’s a quick snapshot of my history.
Last year, starting around June, I suddenly lost my period for nearly five months. My FSH levels were within the normal range, though I did have a fibroid. Eventually, my cycle returned, but it has become much shorter, lasting only about 17 to 20 days, sometimes accompanied by two days of intense bleeding. No pain, though. Occasionally, I feel discomfort in my neck in the same spots where it hurt during my thyroid issues.
At the same time, I spent the entire summer dealing with terrible nausea and a strange odor in my urine, along with an unusual taste and smell in my mouth and nose. An ultrasound showed kidney stones. These symptoms persist almost daily now. Toward the end of November, I started experiencing vision issues—sudden episodes of blurred vision lasting anywhere from a few to ten minutes before clearing up. This has continued until today.
Since I have lesions on both optic nerves, I went through extensive testing: VP, VEP, full ophthalmology exams, and seeing a neuro-ophthalmologist. They couldn't find a reason for this intermittent blurring.
As time passed, things just felt worse. I was feeling isolated, stumbling around at times, struggling to concentrate, and constantly tired. Then there was that awful smell in my nose, the taste in my mouth, and the scent of urine (even though my urinalysis was sterile!). One day, I couldn't even follow what a colleague was saying because the brain fog was so thick. I checked my blood sugar with a glucometer and it was 14. Because I felt nauseous all week, I tried eating a "diabetic-friendly" diet—lighter meals, no fasting—since my mother was diabetic and I know the drill. This morning, I had oatmeal and an orange for breakfast. For lunch, I just had a small bowl of Rice-A-Roni around 12:30 PM. My glucose was around 14 at 6:30 PM, then dropped to 7 by 8:00 PM.
I had lab work done at the clinic: OGTT results were 5.9/6.3 (not labeled as pre-diabetic). Fasting glucose was 5.9 (normal range 4.4–6.4).
Everything else seems to be within normal limits... glucose in urine is normal (L). Ketones in urine were 35 (normal L). TSH is 1.53 (normal 0.34–5.60).
I’ve been referred to an endocrinologist. Here are the findings:
Beta cell activity is 47%.
Peripheral insulin sensitivity is 115.9%.
Insulin resistance index is 0.9 (unit 1).
Reference ranges weren't listed!
(Ten years ago, I had early-stage glucose intolerance and insulin resistance, along with menstrual issues and weight gain. Metformin brought everything back to normal, and I stayed off it for two years once the results looked good.)
Other recent results:
Fasting glucose: 6.6 mmol/L (normal 4.4–6.4)
HbA1c: 5.6% (normal HbA1c SI: 38 mmol/mol (normal eAG average glucose: 6.3 mmol/L (normal Insulin: 37 pmol/L (normal 21–174)
PTH: 8.6 pmol/L (normal 1.5–7.6)
LH: 15 IU/L (follicular phase 2.1–10.9, mid-cycle 19.2–103, luteal phase 1.2–12.9, postmenopausal 10.9–58.6)
FSH: 37.9 IU/L (follicular phase 3.9–8.8, mid-cycle 4.5–22.5, luteal phase 1.8–5.1, postmenopausal 16.7–114)
Testosterone: 1.6 nmol/L (normal 0.3–2.6)
Estradiol: 287 pmol/L (follicular phase 99–448, periovulation 349–1589, luteal phase 180–1086, postmenopausal 73–147)
Prolactin: 182 mIU/L (normal 71–566, postmenopausal 58–416)
Progesterone: 3.4 nmol/L (follicular phase 0.5–3.1, luteal phase 13.1–49.4, postmenopausal 0.2–1.5)
DHEAS: 5.7 micromol/L (normal 0.5–6.3)
Androstenedione: 8.3 nmol/L (normal 0.7–13.9)
The endocrinologist says everything looks fine. Since the PTH isn't significantly elevated, they don't think it's a major factor.
Interestingly, my PTH was already high when I was first diagnosed with insulin resistance, and my cortisol and ACTH were low back then too.
Five years ago, I ran some tests; back then, beta cell activity was 78% (and now it's 47%!?!?). The OGTT was fine.
Insulin reference range is 21–174—back then it was:
Fasting: 41
30 min: 270
60 min: 320
120 min: 160
180 min: 30
...300 min: 37.
C-peptide reference range is 0.37–1.27:
30 min: 1.56
60 min: 1.6
...300 min: 0.37
I have a glucometer... I check regularly and recently got a new one. I can't seem to catch a consistent pattern in my readings—whether it's fasting, before meals, or 2 hours after. Just doing those standard diabetic checks, my fasting goes from 3.6 to 8, my 2-hour post-meal is between 3.2 and 13.2, and random checks also swing between 3.2 and 13.2.
I’ve noticed that
whenever I eat something poorly, I get incredibly drowsy—to the point where I feel like I might actually pass out. My GUK sits around 3.2–4.5 during those times... and once it hits 4.2, I get so sleepy that I just drift off.
Right now, I’m following a pretty disciplined diet, much like the nutritional guidelines you'd find in a standard American medical textbook.
The moment I have something sugary, like a juice, I get this awful, lingering taste and smell in my nose, mouth, and even my urine... it even happens with bananas. Once, I had three Nabisco wafers, and the sensation was indescribably unpleasant.
Regarding ketones in my urine, some say they aren't a big deal since my OGTT results look fine. That
reading of 35 was likely because I was fasting that morning and strictly adhering to my diet. Usually, my ketone levels stay within the normal range, even when I'm struggling to keep food down due to MTC-related nausea!
Honestly, I have no idea what’s going on with my body. Yesterday, I had a single Corny bar for breakfast, and immediately afterward, I felt nauseous, smelled acidic, and experienced blurred vision.