Last weeks blog post stirred up a lot of emotion in me, I didn’t realise just how angry I was at my treatment at my last hospital appointment.
After writing that post I had received a letter stating all my hospital blood tests had been normal. Showing no signs of any inflammatory markers, so there was no explanation for my tiredness or hirsutism or increased joint pain. So when I retrieved a letter from the hospital out of our mailbox on Saturday morning, I really wasn’t perturbed. We have a mailbox as the three mutts like to shred our post given half a chance. I have so many hospital appointments on the go at the moment it feels like quite a juggling act keeping track of them. The contents of the letter sent me into a tail spin.
The letter was a copy of the one that my hospital consultant had sent my gp and one of the blood tests was far than normal. To shut me up and prove me wrong (because he had accused me of looking for syndromes on the internet) the dr had tested my prolactin levels. I had suggested to him that maybe it was possible I was suffering from PCOS (polycystic ovary syndrome), it runs in families (my sister has it) and it would explain my weight gain every time I ate carbs, the facial hair I was growing, acne and my periods deciding to come whenever the hell they wanted despite me being on a progesterone only contraceptive pill. I had brought this up with the registrar I saw back in February and my bloods had only now been tested for it.
I could have quite easily been one of those patients whose symptoms are missed because their doctor thinks they are trying to collect labels / syndromes.
The letter read;
“It is interesting to see that Rachel’s prolactin levels are high at 2629mu/l. There is no evidence of macroprolactin. This is out of keeping with polycycstic ovary syndrome and it may well be her menstrual irregularity is secondary to her high prolactin at the moment. I had better get an MRI scan of her brain organised and will do this forthwith and copy the letter through to her so she knows what is going on.”
*for USA readers to convert to ng/l divide by 10.6 which should give you the figure of roughly 253.
Immediately I was sent into a panic, I knew that high prolactin wasn’t good as an internet buddy had just had an investigation with her levels being half of what mine were. She had asked me to find out about prolactin. I had done a quick search and knew from doing that it meant Pituitary Gland Tumour. I was alone, it was a bank holiday weekend so all my friends were either working or a way. In a fit of panic I called my parents who were nearby at their caravan and explained the letter to my dad. Well actually I probably freaked out on my dad and said my blood tests show I might have a brain tumour. I went into full on drama mode because I knew a little and not enough.
Looking back over the Saturday what has annoyed me more was the fact my consultant knew that I knew high prolactin meant the possibility of a tumour, it was sent by 2nd class mail over a bank holiday weekend where if I wanted / needed to speak to someone medical I would have to wait until the Tuesday. It was thoughtless. I know he has no control as to when the letter is sent but to send out a letter like that in this day and age where information good and bad is at your fingertips is just wrong.
My parents arrived without warning around 20 minutes after I made my call to them. I am extremely grateful. In that time I had googled quite a bit (and I have googled quite a bit more again). The information I was getting was conflicted. In the USA a figure of 250ng/l or more is what all the articles say is highly suggestive of a tumour. In the UK all the articles say levels over 2000mu/l need investigated but only levels over 5,000mu/l mean there are a tumour. So it would seem I am in another grey area……again. Could be a tumour might not be a tumour.
Normal prolactin levels are <400 (if like me it has taken you forever to work out what those arrows mean, its less than). Between 400-1000 is classed as mildly elevated, 2000+ is classed as high, over 5,000 didn’t have a classification so I am guessing that it’s “very high” or WTF?? So as you can see I am sat in the middle again, possibly, possibly not a tumour.
Medications can elevate your prolactin levels, I am on 3 such medications and have been on them a long time. Lansoprazole since 2002 and opiates (morphine) since 2011, the contraceptive pill on and off since 1990. So if either of those three were the culprits I would have had symptoms well before now.
Prolactin is the hormone that stimulates milk production in females, so is normally high during pregnancy and lactation. One of the symptoms of high prolactin is milk production and it can happen in males also. I have been lucky and been spared that symptom. Otherwise I would be able to wet-nurse my new nephew. I should imagine producing milk as a male is pretty distressing. Most males with high prolactin aren’t discovered until their levels are in the 5,000 level because another symptom of high prolactin is irregular menses (periods).
My menses / periods have been up the creek since last summer. Initially I put it down to being changed from the branded version of my contraceptive pill to the generic version. Which could be just coincidental, the rest of me felt fine, apart from the black hair that has decided to sprout on my top lip, chin, neck and face. When you are naturally blonde it can be quite distressing having to pluck the random hairs that seem to appear a foot long only a day after your last check. Over the course of the last 6-9 months I have developed a chin full of blackheads, my back is covered in acne and my neck is also joining in. I can hand on heart say that I went through puberty with barely a spot much to the annoyance of my peers. So to have all this acne / bad skin now has been confusing and unsettling. I just presumed I was heading towards the menopause. In fact I discussed this possibility with my gp at my last appointment. He told me tests for the perimenopause were terribly inaccurate but it could well be that I was heading down that path.
The problem is when you hit your forties the menopause is pretty much all that is suggested when your periods come and go as they please. The doctors have never taken my complaints of sprouting black hairs seriously, it is probably because I don’t venture outside of the house with a full handlebar moustache, that they just don’t get it. They take a quick look at my face see no facial hair and presume that it is all in my head. There is no way that I would be seen in public with dark black hairs on my face. As a woman I find their presence deeply upsetting. However it isn’t just my face these jet black hairs are appearing, they have popped up on my arms and thighs. I feel like I am turning into a Yeti ( it is nowhere near as bad as some poor ladies I have seen who have to shave twice a day and my husband isn’t getting stubble rash when we kiss) but until now my complaints have fallen on deaf ears and it has been something I have been complaining about since 2006.
I don’t know why the black hair upsets me so much, it’s possibly because I worry about when I am old and demented that I shall look like the bearded lady from the circus.
My other symptoms have been that no matter how hard I diet my weight barely moves in a downwards pattern. As soon as I have alcohol ( a glass of wine or two I am not a heavy drinker) or carbohydrates I put on half a stone (7lbs). My reaction to these foods is over the top, I eat much less than I ever have but the weight keeps piling on. I find myself constantly wearing my fat jeans instead of my “normal” jeans because my stomach seems to be attracting all the extra fat cells. I have also been suffering from crippling fatigue, I have been tired before but nothing like this. Bone tired is what I call it, where I can’t move for feeling tired. I have no motivation to do anything. I am not depressed, I still laugh, see people and have fun it is just I am so exhausted that I can’t manage to do things.
The thought of having friends over fills me with dread, not because I don’t want to see them but because I know the whole morning will be spent recuperating from having a shower. I am sleeping every afternoon, something I haven’t done since 2007/2008 and it’s not for lack of sleep at night (my sleep can be broken but I am managing 8 hours in total). I am just so tired by just doing the things I have taken for granted normal living stuff not painting the town red.
After a lot of googling medical articles, discussion boards, health pages I have discovered my vague symptoms all fit what I have hyperprolactinemia (another label). So after my initial freak out, I felt vindicated. I wasn’t going mad, I wasn’t being lazy, I wasn’t depressed. Then I got angry, very angry because yet again I hadn’t been listened to when I told the doctors that I knew something was wrong. I could feel my body was out of whack. I didn’t know what it was but I knew what I was feeling wasn’t normal. I knew it was hormone related due to the acne on my chin etc yet I had been told I spent too much time looking up syndromes on the internet or was met with blank stares.
Even without the presence of a tumour my high prolactin levels are going to have to be treated with medication. Pituitary tumours of this nature a prolactinoma are treated with medication to make them shrink, very rarely if ever are they removed. They are almost always benign, so all brilliant news. High prolactin though is damaging to the bones and can cause osteoporosis (thinning), having Ehlers Danlos Syndrome already means that I am at high risk of losing bone density when I hit the magical time of the menopause. I could also need replacement hormones to get my cycle back on track which would be given in the form of HRT. This is all dependent on what the endocrinologist thinks when I eventually get to see one.
My MRI with contrast is booked for next Tuesday (8th September). I have had many head MRI scans so its nothing new I know it’s noisy etc. The only thing that concerns me is getting the cannula in as my veins are so shoddy. Fingers crossed it goes ok. When I will get the results from the MRI scan I am not sure, I should imagine they will need reviewed by several people before a final report is given.
I am swinging from one emotion to another, worry, anger, calm and then back again. I am hoping that I get some treatment soon so I can start to feel better than this, where I am begging to go to sleep constantly. I never appreciated fatigue until this happened.
My handlebar moustache is probably here to stay, so I will be looking into laser treatment when the health stuff is sorted.
Thanks for reading!
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