Sanne’s Story

My story starts January  2006.

I was very happy to finally being pregnant, I always wanted to have a baby, but my partners never did. So now I finally found someone who did want us to have a child, conceiving was easy (luckily, I already was 38 years old). From the beginning I was afraid that something would go wrong during the delivery, so I planned to have my baby at the hospital (in the Netherlands it’s very common to give birth at home). I had a wonderful, by the book pregnancy, never felt better!

Two days before the birth of my son, I felt strange, had some tests done at the hospital. My HB (Iron) was too low, so I was told I would be given an injection as soon as the baby was out, to help the placenta get out quickly, to prevent too much bleeding. The baby-signs were fine, so nothing to worry about.

On Sunday morning October 8^th, (4 days after due date) my water broke, the midwife came. She checked everything and went home, leaving instructions for the next couple of hours. At 8 PM she checked in again, I hardly had any contractions, but my cervix was slowly opening up. She told us to get some sleep, it would happen that night (it had to, after the water broke, I had 24 hours, or they would have to help the baby out).

Around 6 AM I thought it was time, the midwife came, I had dilated (???) 8 centimeters, so just 2 more to go. Having had a perfect pregnancy, the midwife saw no reason to rush to the hospital, so we decided to have the baby at home. Everything was put in place, I sat in the shower for a while to help the contractions. I did not have strong press contractions, had to do most pushing on pure body strength. The baby was born just within the 24 hours, with help of an epidural, otherwise it would have taken too long. When Niels was born, I immediately was given the medication to lose the placenta, but it didn’t work, so I got another shot. This didn’t work either, so an ambulance was called.

When they came, they asked me if I could sit up straight, to see if I could get downstairs. As soon as I sat on the bedside, I got dizzy, so they put me on a stretcher and carried me downstairs. On top of the stairs they had to put me up straight, and I passed out. I woke up in my front garden, the midwife talking to me for reinsurance. When she knew I was o.k. they rushed me to the hospital.

At the hospital the doc pulled the umbilical cord, which almost made me pass out again. They put the bed head down (position called Trendelenburg) and I was taken to OR, where they took out the placenta. I remember waking up at the recovery room (12.15), they told me they were waiting for blood transfusions before I could return to my room. (I wondered why it took so long, I had been donating for years….). The blood never came, so I was brought back to my room, where I could finally take a good look at my new born son. After an hour, I finally got the transfusions.

After 2 days I went home, livid, very tired, continues heavy headaches and no luck breastfeeding. After a few days (don’t know exactly how many) when the headaches didn’t go, the midwife took me to the hospital again, but they could not find anything wrong. I gave up on breastfeeding, so I could have stronger medicines to get rid of the headaches.

The next few weeks were like any other new mother, I thought. Feeding the baby, get sleep, etcetc. I felt very tired, but hey, I just had a baby!… November 10^th was my birthday, but I skipped it, didn’t feel up to it, I was tired, constantly fell asleep and had muscle- and belly pains, like I was getting down with the flu or something. After another week I went to my GP, he said it was post natal depression. I urged him to look further, I was certainly not depressed! He checked my belly (I would scream if only pointed at) and ordered a blood test. He called the next morning, my thyroid seemed to be working too hard, something that often happened after giving birth, he told me. I was given medication to slow the thyroid down, and got an appointment at a befriended endo.
This doc ordered some more tests, but didn’t find anything out of the ordinary.
After a few weeks my thyroid seemed to have stopped completely, so they stopped the medication, hoping the thyroid would start working again. Of course it didn’t, so another few weeks later I was given Thyrax. This didn’t make me feel any better, I got worse and worse.
My parents, sister and mother-in-law came and helped me out every day, I could not do it on my own, my husband had to go to work. When I took a shower (sitting on a chair, I couldn’t even stand this long), my husband had to dry and clothe me, I couldn’t move a muscle… I constantly fell asleep, even just sitting on the couch, holding my baby.

In April I went back to my GP, to ask for a second opinion. He said that wasn’t necessary, this endo was very, very good. I kept pushing and went to another endo. Here’s when my life came back….

This doc listened to my story (fatigue, extreme headaches, no breastfeeding, still no period), took one look at the blood results taken by the first doc and said: I think I know what’s wrong with you, I have to take one test tomorrow morning and then we’ll know for sure. So the next day I had the ACTH test, which confirmed Sheehans Syndrome.
He immediately put me on a double dosage of HC, I felt the life get back in me within days!
About 4 weeks after the diagnosis I had an Addison crisis and ended up at the hospital. I woke up nausea and vomiting. At the ER they didn’t know what it was, even after I told them it could be a crisis, and wanted to send me home, but every time I got up, I started vomiting, so they finally admitted me to the internal ward. They put me on an IV with physiological salt, but they had no cortisol at the ward, so they had to get it elsewhere. After a while I had to go to the bathroom (diarrhea), no one responded, so I went alone and almost collapsed. I could just get back to the door, open it up and cry for help. They dragged me back on the bed (low BP, high temp, almost passing out), the doc immediately ordered the cortisol to prevent me from passing out completely.

The next couple of months my endo introduced all the missing hormones. Cortisol, Thyrax, marvelon,  and Cozaar (my BP is too high). After mentioning I had problems sleeping because I had to pee so much, he put me on minrin (desmopressine) before  going to sleep and after mentioning I had problems making love, getting exited, he also put me on DHEA. Growth hormone was the last to be substituted. I had to take the ITT test to show the insurance company I really needed it. I think it took about a year before all was replaced and in good range.
After using GH for about 2 years, I had a period where I couldn’t concentrate and had problems remembering things. I thought it was just me, but then my IGF showed up too low, so the dosage was taken up and the problems disappeared. Another 2 years later same problem, this time I instantly knew where to look for solving the problem, and again the blood results showed I was right.
At my last appointment I asked about replacement of oxytocin, my endo hadn’t heard about that, he’s going to look into it.

I slowly went back to work, starting almost a year after the delivery. My boss is very understanding and wants to make sure I can keep on working. Before I got sick, I worked as an activities supervisor with people with non-congenital brain damage. This means working with groups about 10-12 people. Getting back to work I started doing administrative things. I liked it and was good at it (always had been), and I was offered a new position as coordinating supervisor. I had to take a course for 1 year, because my education wasn’t enough to take the position, but one year I could handle! It was a course in coaching, I learned a lot (about myself as well).

At this moment I am home sick. Again my boss and colleagues are very understanding. I’ve always told everybody what is wrong with me, they know where to find my emergency syringe, and are not afraid to use it, or call 911 and have them do it.
For the past 8 years I have tried to keep on going as I was before my illness. I still work 4 days a week, take care of most of the things at the house and I attract lots of other organizing things (it’s in my nature J). I cycle to work every day, so I stay fit (it’s 12 kilometers and since having sheehans I have an electrical bike, which makes it easier to pedal).
Every two years something happens that confronts me with not being healthy anymore. First the Addison crisis, then a thrombosis, then a hernia and now, this January I had a double, multiple pulmonary embolism. I now feel I lost all faith in my body.
I am now at a point where I can see that this can’t go on and if I don’t step back, I will burn out.
My endo said it like this: You started your travels with an empty backpack. Along the way, stones are put in, but that doesn’t matter, you keep on walking, even though the load is getting heavier and heavier. Then something happens, you trip and fall, the backpack falls of. When you try to lift it to put it back on, you can’t do it, it’s too heavy…..
I tripped with this embolism, I now have to take blood thinners for the rest of my life, as if there aren’t enough meds to take in one day, and having to check this every week or every other week.
My endo tells me there is nothing more he can do for me, he can only give me the right medication to keep everything at a reasonable, average level.
Learning how to cope with being hormone average and trying not to do more than I am able to do, is something I have to do myself. Next week I’m seeing a psychologist to see if he can help me with this.
It hurts to realize I can’t do all those things anymore, it feels like I’m failing, but on the other hand I already feel like I don’t have to walk on my toes anymore and it’s such a relief.

Having to take meds 4 times a day doesn’t make it any easier, you just can’t forget your sick for a couple of hours. The whole day through you’re reminded something is wrong, and if you don’t take the meds on time, you’ve got a big problem!
In Sweden there is a time released HC tablet, which means you only need to take it once a day. Since I always keep forgetting to take my meds (don’t have my cellphone with alarm with me all the time), I hope it will be introduced in the Netherlands as well, it would be so much easier to take meds 2 times (getting up and getting to bed) a day instead of 4!

Looking back I think a couple of things could have been done better, preventing or diagnosing this condition.
According to the midwife, I did lose a lot of blood, but did not hemorrhage  excessively.
It’s more likely my pit didn’t get any blood/oxygen when I lost consciousness being carried down the stairs. They should have carried me head first.
When the first endo said my thyroid was working too fast, he missed one of the other figures at the  blood results, he saw that thyroidfigure and thought that was it. Later I was told a thyroid that doesn’t get controlled (by the pit) let’s go of all the hormones he has in it, thus looking as if it is working too hard while in fact it’s not working at all.
Talking with other Sheehan women there are some more symptoms which could have led to an earlier diagnosis, because everyone has had them: the extreme headaches the first week after the delivery, not being able to breastfeed, no period, loss of pubic hair, extreme fatigue.
Both my mother and sister had problems with the placenta not coming out. It’s probably a genetic thing, but no one ever told us. If I had known this, combined with the feelings I had (that something would go wrong), I would have made sure I went to the hospital instead of giving birth at home!

Sanne
date of birth: November 10, 1967
Sheehan since October 9, 2006, diagnosed April 2007

Aalsmeer, the Netherlands.