Thank you all for your replies. My biggest error (among many) is that I have not been taking calicum - at all since surgery. I have a concierge physician and have kept careful records over the years - had lots of blood tests - seen many specialists, etc. However, I never had a PTH test until Jan 2021. Oh my gosh! I have been in secondary hyperparathyrodisim since 2005! It advanced to tertiary hyperthroidism around 2018 (hard to pinpoint) and I became increasingly ill with a myriad of general symptoms for a woman in her 60s (I'm 68) - extreme fatigue, body aches, terrible brain fog and memory loss, difficulty word-finding, depression, anxiety, irritability. And, I have no appetite. I am 5'7" and this morning I weighed 119.5 pounds.
However, I already had SIGNIFICANT health events that no one ever tied to my RNY. As soon as I learned about PTH being overlooked for 16 years, I read every NIH report I could find on long term effects on RYN surgery - wow! Now I know why:
1. I developed kidney stones for the first time in my life in 2008. The stones have been a continous problem - worsening every year. A silent stone killed one kidney in 2015. My remaining kidney is full of stones and is constantly monitored by a urologist and a nephrologist. I have frequent UTIs associated with the stones. I have had mutiple internal and external lithotripsy and cystoscopic retrievals of stones. The UTIs have advanced to sepsis three times. Doctors (me, too) generally knew the stones were caused by RNY but no one, myself included, thought there was any way to mitigate the formation of stones. I thought it was a consequence that every RNY patient experienced. In fact, I did not think the surgery was even performed anymore because better methods have been developed. Since I learned about PTH, I know RNY is the cause of my kidney stones and it WAS preventable if I had been taking calcium. In addition, only 8% of patients develop kidneys stones post-RNY. I have Chronic Kidney Disease Stage 3b (irreversible).
2. In Nov 2010, I went into "sudden cardiac death". In 2010, five years after RYN, at age 58, I went into ventricular fibrillation in my sleep. I began making strange sounds that woke my husband and dog. He immediately called 911 and started CPR. Only 5% of people in this situation survive intact (physially and mentally). I was in an induced coma with my body temperative lowered to help prevent brain damage. My husband got the name of a mortuary and notified my family. I survived but no one could figure out the cause. I had every test in the world and a defibrillator was implanted in my chest. My primary cardiolgist (who I still see) thought it was a errant arrhythmia. I was later found to have premature ventricular contractions (PVCs). An off-kilter sequence of irregular heartbeats stopped my heart in 2010. Since I learned of PTH, I read a 2018 NIH report that proves a connection between development of arrhytmias, up to and including sudden cardiac death, with some post RYN patients. I discussed it with my cardiologist. She knew about the linkage (since 2018) but didn't connect her 2010 patient with the problem. Now, she wholeheartedly agrees that my cardiac arrest was caused by absorption issues and depleted stores of calcium. I have a defibrillator for the rest of my life.
3. In 2014, I developed a terrible, life-threatening infection in an ordinary mucoid cyst on my right index finger. I was at my dermatologist for another reason and I casually asked about it. She said it is harmless, an aging thing and most go away on their own or never cause a problem. However, she told me if it every bursts open, I should immediately call a hand surgeon. Well, you guessed it. I have had three cysts excised, three nails pulled, two joints fused, and 3 weeks of daily IV infusion therapy by an infectious control doctor that made me sick for 3 months following the IV treatments. After learning of RYN complications, I thought about all my infections - the UTIs, slipping into sepsis so easily, the terrible infection in my finger - as I now read NIH reports linking lack of vitamin D to the immune system - I wonder.
4. In 2018, the retina in my right eye tore - no eyesight in my right eye. It was surgically repaired (vitrectomy). It was almost healed when it tore again and I had to have surgery again. I now have permanent loss of my right peripheral vision. An NIH study links malabsorption of nutrients with RNY. In 2005, nothing was known about these complications (a lot has been learned) but I did not keep up with the literature. I now know that a whole industry of bariatric vitamins and supplements are available. I never knew.
The sad thing is that this did not need to happen and most of it is irreversible. I had parathyroid surgery in May but I have not been seeing the improvements that many patients have followig surgery. This is because I advanced to the tertiary stage - there is not a lot of research. But doctors think my kidney stone production will probably not cease because it has gone on for so long. I am still in the testing phase and getting lined up with health professionals who have experience with post bariatric complications. I hope things can be improved. I'd love to get in touch with others - there have to be other people out there like me.
Polly
