I want to help spread the word about Sheehan’s
My journey with Sheehan’s Syndrome began after the birth of my second son on 24 May 2023.
The pregnancy was healthy and I entered into labor at 39 weeks spontaneously. Due to complications with the baby (very low cardiac beats during contractions) we opted for an emergency C-section after 8 hours of labor.
The C-section went as expected, no significant loss of blood, no hypotension… however 2 days after I started having some strong headaches, which the doctors said were a complication of the epidural. The headache went on for a few days (5/6) and then eventually went away. I could not breastfeed, the milk would just not appear. I breastfed my oldest son so I was very aware that I was not having any milk and started giving formula immediately. 10 days after the birth I scheduled an appointment with an Lactation Consultant who advised me to stimulate with the pump and told me to take motilium (there are studies stating that this may increase milk supply). She didn’t have an answer to what was happening. She said that the only situation where a woman cannot breastfeed is when there is a significant loss of blood during birth or hypotension (she didn’t mention Sheehan’s Syndrome directly unfortunately, as it would have saved me some time indeed).
So following the Lactation Consultant’s advice, well, you can imagine the days after.. pumping every 2 hours and not even a single drop of milk would come. I tried for 10 days, the most exasperating days… I knew something was wrong but still I did give it a try. Of course it did not work out.
So fast forward to August and I realised how tired I was, as my husband would stay with the baby during the night and I would sleep all night and still wake up feeling like I had no energy to leave the bed. But it was only until I felt very hot during random moments of the day that I thought something was definitely not right. When I scheduled with the endocrinologist I was pretty convinced I was in the menopause! I was so sure the doctor laughed and said that option was highly remote but she did listen to me and most importantly she did say it was not normal to feel this fatigued 5 months after giving birth (everybody else just kept saying to me “oh you have 2 small kids it’s normal that you are tired”). She then asked me to do some blood tests.
Of course the blood tests were a mess, with failure of growth hormone, thyroid hormone and sex hormones. The doctor kept asking “are you sure you didn’t lose a lot of blood?” It was like it didn’t make sense for her! Of course she wanted to do an Magnetic Resonance Imaging (MRI) scan just to confirm and the outcome was that my pituitary was damaged.
I immediately started taking Eutirox (Levothyroxine) and the pill and noticed a drastic improvement in my well being. A few months later (January 2024) I got an ear infection and started having symptoms of cortisol failure. I immediately started taking hydrocortisone (currently taking 20mg per day) but we are planning to do some experiments in May in order to check how my ACTH behaves.
Although it was very hard at the beginning to understand that my body was failing (I never had an health issue), nowadays I feel great, I think I do have a good quality of life and that is precious for me. I no longer feel the anger I did at the beginning as I can see that things are pretty manageable if I take the medication, do exercise in a regular basis (3 times a week) and take care of the diet. I am also very lucky to have an endocrinologist who cares for me and is always available by phone if something comes up (when I started the hydrocortisone it was tough, I would have a lot of headaches and she was always available to make the necessary adjustments and just listen me complaining 😂). But I am not gonna lie, I secretly wait for the day my blood tests are awesome and my endocrinologist says that I am in remission and my pituitary has returned to normal and this was all a mistake …no one “likes” to be on pills I guess.
I am also very grateful for having found this support group which has provided me with so many valuable insights in a very short time … this is public service! I also want to help spread the word about Sheehan’s, as I cannot imagine how many women are out there waiting for a diagnosis and suffering everyday…
Bárbara, from Portugal