I have recently been given a “probable diagnosis” of a a rare condition called Sheehan’s Syndrome
It is “probable” because the actual tests for it are so awful I’m choosing not to put my body through the mill to have them, what I can say is that after 11 years of feeling mostly like I’ve been hit by a truck, this diagnosis really resonated and drew a painful line through everything I’ve experienced.
Rewind to January 2004 and I was about to give birth to my phenomenal daughter.
I sailed through pregnancy, in fact I adored it and was totally up for the labour but, sadly, like millions of other women my water birth with candles and plinky plonky music gave way to a horrific 3 day trauma ending in an emergency C-Section followed by a placental haemorrhage.
Neither I or my medical team thought much about that (or at least if they did they didn’t tell me) and my story basically then looks like an 11 year battle through a myriad of life changing symptoms: chronic fatigue, post partum psychosis and post natal depression, culminating in a diagnosis of PTSD all this plus horrific IBS, migraines and weight that wouldn’t shift.
I write none of this for sympathy, I’m better than ok, I have done a HUGE amount of work around all of this and it led me to my career change and actually it’s led me back to myself, for which I am deeply grateful.
My emotional journey around my birth trauma has and will continue to be well documented (mostly to break taboos around childbirth and to ensure we don’t let women experiencing what I went through feel like they are isolated) but my physical journey has always been a bit of insider knowledge. It’s why I got into alternative health but it’s kinda hard to be a health practitioner at the top of your game and admit you aren’t well.
So back to my “probable diagnosis”
The tiredness, joint pain, weight battles, funny tummy have all been standard issue, but around two years ago I started to get really crazy things happening with my periods. My previously regular cycle would go from 25 days to 17 back to 35, it was all over the place, it was painful and heavy and my hormones were out of control.
I tried a lot of things: acupuncture,EMDR, oestrogen detoxes, liver flushes, cortisol detoxing, homeopathy, kinesiology, supplements, blood tests, literally everything
I went to GPs, I have been verbally abused by one and patronised by another but In December 2014 I finally found someone who would listen to me.
Period issues are either caused by problems in the ovaries or womb (endometriosis, PCOS, fibroids etc) or hormone imbalances (oestrogen, progesterone, adrenaline, cortisol, thyroid hormones etc)
I had more blood tests, they are always perfect so she started looking at autoimmune conditions. Whilst I was thankfully clear of these I was literally praying that something would be discovered. I was sent to a Gynaecologist and had an ultrasound which showed my ovaries and womb were healthy so we were back at square one.
For a while it was thought I had ME but that wouldn’t explain the periods
House MD would say that the chances of having two conditions creating symptoms would be unlikely. Now I know he is fictitious but there is some truth in here.
It’s more likely to be one primary condition causing symptoms that branch off and look separate but are in fact linked back to the main event.
In desperation I took myself to see the published author and retired Endocrinologist Dr Durrant-Peatfield – a Thyroid and adrenal specialist who uses nutrition to rectify imbalances.
He took one look at my history and pointed out Sheehan’s being an obvious and textbook cause of my issues.
Sheehan’s Syndrome is rare in the western world. During pregnancy and birth the anterior pituitary gland swells with all the extra work it’s about to do. If the woman has a) low blood pressure or b) loses a lot of blood during the birth process the anterior pituitary can lose some oxygen supply and atrophy, typically I had both.
The initial symptoms are:
Poor lactation (tick)
Excessive fatigue (tick)
Weight issues (tick)
Cold intolerance (tick)
Sheehan’s isn’t usually considered because these symptoms can be normal post birth.
He has seen cases where Sheehan’s presented even when blood tests show as “normal” it’s a bit like my poor pituitary got a bit damaged but is managing to do all its work ok but it’s really, really stressed. When something else comes along its still doing its work but let’s something slip. In my case my periods and energy and this started at a time when our business stepped up a gear and I was much more stressed.
It can take decades for the underlying cause to be shown usually because extra stress is put on the body and the pituitary can’t cope and creates other symptoms.I did some deeper tests – 24 hour saliva and urine tests to see what my body is doing with my hormones (it’s one thing to know I have enough of them but it’s another to find out what how my body is using them)
It turns out I have low cortisol (a sign of exhausted adrenals) low DHEA and low T3 (my body isn’t converting T4 into T3)
So what does this mean for me?
Well I’m not about to go on hormone replacements because I am a passionate believer of alternative health, so I’m on high doses of specific supplements to raise my cortisol , I had fallen into a habit of one coffee a day, which works for some people but I am a bit intolerant and it adds to my fatigue so that’s gone, I don’t eat sugar, dairy or grains as a rule but I’m being really strict. I’m eating a lot of good fats, I’m doing a lot of liver support work and I’m currently only drinking a glass of wine every few weeks and I still exercise three times a week but I’m listening to my body. The weight I lift goes up and down but it’s more important to work with my body not beat it when it’s tired.
So far it’s been a few months and I’ve had normal cycles, I’m pretty tired but I’l keep you posted on how it goes and of course all this new learning is brilliant for my clinic!