“My Endo said that it wasn’t known whether the levels of alfacalcidol that would transmit to the baby in the breast milk would increase the baby’s calcium levels too much, so we came up with a plan to test the baby’s levels a few weeks after I started breastfeeding.”
I had been living in the UK for four years when in March 2002 I was diagnosed with papillary thyroid cancer at the age of 29. A day later I found out I was six weeks pregnant and two days after that I miscarried. A week later I was in surgery to remove my thyroid gland but unfortunately I developed hypopara as a consequence of the surgery.
A year after the various treatments for the cancer my consultant said that we could start trying for a baby again and fairly soon after I was pregnant. I had a separate Endocrinologist to my ENT consultant after my diagnosis with hypopara but my pregnancy Endo care was done through the maternity hospital’s Endocrinologist. I had monthly checkups and bloods and I was a bit of a novelty case as there are not that many of us around. I had a fair few students listening in to my consultations as many had not dealt with hypopara patients before.
From an obstetric point of view I had an uncomplicated pregnancy. My meds did need to be increased throughout the pregnancy and throughout the breastfeeding period, but one side-effect of the pregnancy was that my hypopara symptoms like pins and needles, tingling, and muscle cramps virtually disappeared. I often wondered if the baby was sending PTH back up the umbilical cord!
I wanted to breastfeed my baby but the Endo did say that there were no studies at that time in breastfeeding with One Alpha (alfacalcidol) and so it was unknown whether the levels of alfacalcidol that would transmit to the baby in the breast milk would increase the baby’s calcium levels too much. One Alpha tended to be used more in older women with osteoporosis who were beyond their child bearing years! We came up with a plan whereby I would start breastfeeding and the baby would have a blood test after a few weeks to check the calcium levels.
I had decided that I wanted to have a natural birth if possible but the baby scuppered my plans. My waters broke but I did not go into active labour and after holding out on induction for over 48 hours the obstetricians said they had to induce. Following induction the contractions came fast and furious. I managed 11 hours with a TENS machine and when the midwife said that that I was still only 3cm dilated I said right…. epidural it is!
After a 25-hour labour we welcomed our daughter Róisín Marie into the world at a healthy 8lb weight. She had to be delivered by ventouse in the end in theatre, and we missed the C-section by a hair’s breath! I didn’t need extra calcium IV at all but made sure during the long labour that I had taken my meds. The midwives and registrars were aware that I might need IV calcium but as I didn’t get any low calcium symptoms I was fine.
Breastfeeding was difficult for the first few weeks, but I was determined and stuck it through and after a few weeks Róisín had her blood test to check her calcium levels. They came back as normal so I was able to continue to breastfeed her until she was just under 12 months old.
I had one follow-up visit with the obstetric Endo after about six weeks. After that I was transferred back to my regular Endo who monitored my bloods at three-monthly intervals and adjusted the meds slowly down to my pre-pregnancy levels by the time Róisín was nine months old.
When she was nine months old in 2005 we returned to live in Ireland and my UK Endo transferred me to the care of a former colleague who had returned to work inIreland. I settled into the routine of three and then six-monthly blood tests as I am quite stable.
In spring 2007 I became pregnant with our second baby. The pattern was quite similar with the maternity hospital Endo taking over responsibility for monthly Endo check-ups from my regular hospital Endo. (In Dublin all three maternity hospitals are separate from the regular hospitals). Again my meds needed to be increased and again I had a steady stream of medical students eager to discuss hypopara which I was only too happy to talk about!
My hypopara symptoms again decreased significantly during this pregnancy.
Órla Grace was born just before Christmas 2007 after a 19-hour labour. I didn’t need induction this time and had a completely midwife-led delivery with no ventouse etc. I decided against having the blood test for Órla after a few weeks as I felt that if it had been ok for Róisín it should be for Órla. Again I had a follow-up Endo check-up in the maternity hospital and then my care went back to my regular Endo clinic in my usual hospital. They decreased the meds over a period of months according to my blood test results.
The message I would you like to put across to the medical profession based on my experience is to ask questions of the patient. We generally like talking about our condition and are happy to educate etc! Asking questions doesn't mean we think you are ignorant about hypopara, it just means we think you are interested in how we personally feel with hypopara. Not all hypopara patients have the same symptoms with the same blood test results. One patient at a low blood calcium level might be fine, flying around with an active lifestyle and very few debilitating symptoms and another on the same results may be virtually housebound with no quality of life.
My advice for fellow hypopara patients would be to always have an Endocrinologist not a GP. Ask for an explanation if you don't understand. Take a copy of your blood test results, and show your Endo the hypopara website if they aren’t aware of it.*