Tag Archives: endometriosis

Weekly roundup

The UK is enjoying a heat-wave and we may be on trend to have the hottest summer on record.  It’s been over 30C here in the North, which is virtually unheard of, and we’re having the most prolonged hot spell in over 40 years.   I luuurve nice weather but this is too hot even for me and the temperature in my bedroom hasn’t dropped below 26C all week despite a huge fan going full pelt, consequently there hasn’t been a huge amount of sleep happening and I’m now feeling pretty wiped.

Monday, one of my photography buddies and I took advantage of the sunshine and went down to the river with our cameras.  To be fair we didn’t get any useable shots but had a nice time anyway and ate our picnic lunch in a wild flower meadow.  In the afternoon I had to take Bertie to the vets.  He’s had a herniated spinal disc since he was about 3½ and now and again the pain gets really bad, so he’s been put on Gabapentin.  He’s had it before and it It usually helps but this time despite both that and daily paracetomol the pain still isn’t under control so I’m not sure what the next step is going to be 😦

Tuesday my Dad had his long-awaited appointment with the spinal team and has thankfully been referred for surgery.  He’s always been super fit but 18 months ago started with back stiffness and leg pain and is now unable to walk around his home without a stick.  His MRI showed spinal stenosis which can happen as we age, but his seems to have progressed at an alarming rate of knots.  I just hope he doesn’t have to wait too long for treatment.

Wednesday I received a call from one of the men at my Camera Club.  Can you remember we were given arranged seating at our annual dinner the other month and I was placed opposite a single, middle aged farmer who bored the arse off me all night?  Well it was him, telling me I had beautiful eyes and inviting me up to his farm.  I go to my camera club for help with my photography – if I wanted a boyfriend I’d join a dating app.  I had to let him down as gently as possible but it’s now going to be bloody awkward when we next meet up.  I could sodding well kill the woman who organized the dinner and placed me on a table with no less than 3 single, middle aged men I’d tried all fucking year to avoid.

Thursday I had lunch at a lovely local cafe with another camera club buddy.  It’s so fabulous to be able to eat outdoors, although all the goddamn flies are annoying and despite wearing insect repellant I have several, large, angry, I-want-to-scratch-my-skin-raw bites.

Aunt Flo this month has been a bitch.  I’ve had period, endo, bowel and back pain for 10 days now but no proper period.  I had brown gunk for 3 days then 1 day of light bleeding.  Nothing for 2 days followed by anther day of brown gunk.  The pain has been ridiculous though and has included shooting pains down my legs which have kept me awake half the night for most of the week not to mention the fact that I can’t sleep on my favoured left side because it sets off wicked bowel/ovarian pain, and to add insult to injury I’ve had no less than four migraines.  FFS I’m so over it.

With the pain, heat and lack of sleep I’m flagging this weekend so have just had a quiet time not able to do much of anything.  I’d had a couple of photos in mind though, including this one, which I’ve worked on in the evenings, while simultaneously eating my body weight in Haagen Dazs and binge watching old episodes of the Kardashians to avoid the torture of eleven men in shorts chasing a ball of air around a field, otherwise known as the football World Cup 😉

 

 

 

 

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Peri-menopause penultimate phase

I have become a bit obsessed with my waning hormones so apologies if I’m boring you all rigid but to actively watch your body transition into the unknown is both scary and fascinating.  I think I’ve reached a milestone this month, which I thought I’d be doing cartwheels about, but it hasn’t turned out quite as expected and now rather than being joyful I am sodding terrified.

I’ve skipped my first period, which means it’s the beginning of the end and I am probably in the final twelve months of peri-menopause.  I thought I’d be jumping for joy as I’ve been wanting my horrendously painful endometriosis and adenomyosis filled periods to end since my teens but instead I am flamin’ miserable.  I started with the usual period pain, backache, painful boobs, insomnia and exhaustion on about day 22 of my cycle and after five days of symptoms was more than ready for my period to start so that they’d bugger off, but I am still waiting.   I am now on day 40 of my cycle with no sign of bleeding, but the burning, stinging period/pelvic pain is intense, my breasts are killing me and my back pain so bad I have barely slept for a week now.  WT-actual-Fuck?!!

I’ve read that it’s very common for women to experience period pain but have no bleed while they transition into Menopause, but most say that after a week or so the pain just disappears – sort of like having a phantom period.  But mine is not only not going anywhere it’s getting worse by the day 😦  Surely to God I don’t have to put up with this agony for a whole month until I go through another cycle, or even more terrifying the symptoms won’t stay around forever?!

I feel hugely cheated.  I have looked forward to skipping my first period and knowing that finally, finally my monthly torture is coming to an end, but no.  My body, traitor that it is, has once again made the situation worse not better.  I could weep with the injustice.  Have I not suffered enough?

The only good news is that emotionally I am fine, if understandably fed up.  No sign of PMS (not that I’ve ever suffered much with that anyway thankfully) and no migraines.  I so far also seem to have by-passed a symptom suffered by the vast majority of women in peri-menopause – hot flushes.  I had one back in 2012 sat in a cafe, during which I stripped down to my t-shirt even though it was the middle of January and snowing outside, but other than that nada.  I’ve had night sweats leading up my period for years, but nothing so drastic they’ve kep me awake at night or forced me to change the sheets or anything, for which I am grateful.  I do know, though, that the situation would have been vastly different if I were still eating a diet high in histamines.  I used to flush after every meal and am convinced that if my diet had remained the same hot flushes would have been the order of the day.  So I guess that’s a silver lining, though to be honest I would have preferred the hot flushes over the excruciating ramp up in pelvic and back pain any day of the week.

So I shall see what develops.  The only other time a woman’s body goes through this sort of monumental change is during pregnancy, but at least you kind’ve know what to expect with that.  There are a million books on the subject and each woman’s experience is broadly similar.  Not so with the Menopause where the most advice you get is “every woman is different” which is no sodding use whatsoever and you’re basically just left to white-knuckle it, doubly so if you already have other health problems.  I have absolutely no idea how all this is going to affect my M.E., MCAD or hEDS and even though I thought knew how it was going to pan out with my endo and adeno it turns out I was clueless.  I did find a few books on peri-menopause on Amazon, one of which was written by a man (a man!) which is like the blind talking about sight, while others were written by women who haven’t gone through the menopause themselves which is akin to a childless woman writing about giving birth.

It may be that I am not going to actually skip my period this month it is just monumentally late, in which case it needs to hurry the hell up and put me out of my misery.  I don’t know and it’s not like anyone else knows either.  Watch this space, or look away now, I wish I could!

Anaemia update

Last Christmas I realized I was feeling ropey and had been feeling extra rubbish for quite some time.  I was dizzy, constantly.  I could be sitting watching TV and all of a sudden the room would lurch to the left and back again, and there were days when every time I moved my head the world tilted on its axis.  I could sleep for 8 hours straight which is unheard of for me and two hours later need to go back to sleep (I’ve never slept during the day no matter how ill I’ve ever been not least because ME has given me horrific insomnia).  My brain was so fuzzy I literally couldn’t form cohesive thoughts and I had exhaustion so profound some days I couldn’t get off the couch.

Of course, all of these are symptoms of my pre-existing conditions but this felt totally different to my normal rubbish-ness and I knew I wasn’t having an M.E. relapse or a mast cell or EDS flare.  No, something else was going on and I instinctively knew it was related to my iron levels particularly as when I had my period I was absolutely poleaxed.

As outlined in my first post on Anaemia back in February I have several risk factors for iron deficiency and, coupled with my peri-menopause and worsening endometriosis, I knew I needed to get my ferritin levels checked.  They unsurprisingly came back at 17 which according to the lab results was right on the bottom rung of ‘normal’ (17-291), though realistically in order to feel well you should have a ferritin level of at least 50 and preferably above 90.  My vitamin D was also considered sub-clinically low, ie outside the normal range.  My GP dismissed anaemia though because my red blood count was fine and basically just fobbed me off, however she wasn’t the one feeling so crap she couldn’t function so I started on some over-the-counter supplements.

My mast cells seem to hate tablets of all descriptions, so my options are limited to liquids and syrups which are few and far between.  In addition, many of the liquid iron preparations such as Floradix contained all sorts of ingredients I didn’t want or need such as apples (to which I’m mildly truly allergic), spinach, nettles and CoQ10.  So I opted for the ‘Get More Vitamin D mango & passionfruit‘ drink and ‘Spatone‘ natural iron water both of which I could have delivered with my groceries from Tesco.

I have about 200ml of the Vitamin D drink each day, which tastes OK but not brilliant, and gives me 80% of the recommended daily allowance of Vitamin D.  According to my GP, the lab won’t re-test Vitamin D for 12 months so I’ve no idea whether or not my levels have improved after nearly 10 months of supplementation.

Spatone is a sachet of naturally iron rich water which I take mixed in pear juice (the vitamin C aids absorption of the iron and disguises the awful metallic taste).  Iron supplements are, however, notorious for causing nausea, reflux, constipation or diarrhoea and I must admit after 4 days on Spatone I felt sick 24/7 and had awful colic-like stomach pain.  So I had a break for a week, then re-started the sachets but just taking a teaspoon per day and gradually working up to a full sachet.  This worked fine and I had no side-effects whatsoever 🙂

Within a week of starting Spatone my dizziness almost disappeared and I did feel a bit less tired which was great, but unfortunately for me the effects haven’t lasted.  By September I was starting to feel battered by exhaustion again, wanted to sleep for England, was as white as a sheet and feeling constantly dizzy.  In addition I seem to have developed tinnitus, which is a constant low level high pitched ringing hiss in my ears, and I’ve noticed a change in my toe nails (but not my finger nails!).  One of my toe nails has split and despite the nail continuing to grow it just keeps splitting in the same place, while the other nails have started to flatten at the ends.  Spoon shaped nails are a sign of anaemia, but when you Google images you only see horrendous photos at the severe end of the spectrum which bear no resemblance to my mildly flattened nails.  So here’s a couple of pictures of what’s happening for me:


I doubled my dose of Spatone but it didn’t help.  In fact, my symptoms continued to get worse so I rang my GP again, who tried to fob me off by saying that as I already have ME the peri-menopause is going to knock me about, but I tried calmly to explain that I know what ME feels like and this is completely different.  I insisted I wanted my bloods done again, in particular my ferritin and thyroid, although I’m sure my thyroid is fine as I’m not cold and have had no weight loss or gain issues other than that expected of going through The Change.  The first appointment for a blood draw I could get isn’t until 7th December (!), then of course it has to be sent to the lab, analysed and the results sent back to my GP by which time it will be sodding Christmas and everything will grind to a halt until January when it will be so busy getting another appointment with my GP to discuss the results will be impossible.  So I’m now trying to find a different liquid iron supplement to take but am so far struggling.  The thought of feeling this awful for at least the next several weeks, and in particular over Christmas, is pretty depressing.

When you have a chronic disease doctors do tend to put every single symptom you have down to that and it’s often a fight to get them to investigate new symptoms.  But investigate them you must, because it’s been my experience that all the new symptoms I’ve developed over the years have been down to hitherto unknown diseases and were nothing to do with my pre-existing M.E.  In particular, trying to get my chronic pain recognized was a mare because all the doctors I saw simply put it down to part of parcel of M.E. or tried to diagnose me with Fibromyalgia when I knew it was something else, which of course turned out to be Ehlers-Danlos Syndrome.  Then my stomach issues were put down to my EDS, when they turned out to be Mast Cell Disease.  And now my rubbish-ness is being put down to the peri-menopause or my M.E. when it’s going to turn out to be anaemia or at the least iron deficiency.

It’s so hard to fight the medical profession for treatment when you are this exhausted and there are days I feel like putting up and shutting up, but unfortunately that’s not an option when I am so floored I can barely get through the day.  So I shall keep on plugging away until I find out what’s actually going on and come up with a solution.

 

 

 

 

Weekly roundup

Whoooooooo.  This is the sound of me exhaling, something I haven’t done for a good 2 months.  Finally I’ve been able to have a couple of days at home and actually slob about in my jim jams, well until it’s time to take the furry child out for his afternoon jollies when it’s advisable to put some clothes on – I’d be a Smorgasboard for mozzies, ticks and midges if I sauntered through the woods half naked.

Physically my Mum is coping OK, but it’s her behaviour which is astounding me.  She is no longer drunk and we are having actual conversations in which she is lucid, rational and just plain normal.  And she’s now ringing me too, which she hasn’t done for 4 years as she was too busy getting legless.  I don’t have to think about what time of day it is, because I can speak to her at 7pm at night and she’s just the same as she was at 10am.  When she was drinking she was so smashed she made no sense by evening.  On a purely selfish level it’s wonderful.

But more than that she’s really calm.  My Mum’s always been a feisty person and while she’s been drinking she’s been a mare.  She constantly got frustrated and irritated, particularly with my Dad, and was a real bully at times.  But since coming out of hospital she is weirdly chilled.  She is not snappy and constantly losing her cool, which means visiting isn’t the stressful experience it used to be.

I arranged for her GP to come and check her over and had a quiet word with her about the situation.  My fear is that now Mum is out of hospital, she is not being fussed over by the nurses, she doesn’t have the other patients to chat to, she’s not drinking and is discovering the full extend of her physical limitations and isolation that she will nose dive into severe depression.  She drank because she was unhappy and lonely and that hasn’t gone anywhere.  So the GP is coming back this week to monitor her mental health.  I’m not buying this new, zen persona for a second, though I’m enjoying it while it’s on offer.

My hormones have been rampant this week and I had a very painful ovulation.  My egg release is getting more and more excruciating, I’m assuming because of all the endo-related adhesions on my ovaries,  and for a couple of days I literally couldn’t stand up straight.  I also had a niggly migraine for 4 days which kind’ve spoiled my R&R and my emotions were up and down like a bride’s nightie – one minute tearful, the next wanting to tear someone’s head off.  S’not nice.

Wednesday night was my Camera Club and months ago I’d been roped into doing a demonstration on Photoshop.  I woke that morning with a migraine which got worse as the day progressed, but thankfully it wasn’t bad enough to stop me driving so I soldiered on.  All was fine until mid-way through the workshop when my brain suddenly felt like it had become loose and had gone crashing into the side of my skull.  I seriously thought I was having a stroke.  For a few minutes all thought processes ceased and I literally couldn’t speak, which was proper scary.  Although it settled down, for the next half an hour trying to get my thoughts and words together was tricky and my blood sugar plummeted until my hands were shaking.  These weird vertigo-like episodes are becoming more frequent and I’m not sure if it’s to do with the peri-menopause or is linked to my migraine (I’m thinking more hormones because they often happen without a headache).  I do wish they’d jog on cos they’re starting to freak me out.

Being as though I had a few hours to myself this week I was able to take some photos, which I haven’t had time for in ages.  We have a competition coming up with the theme of ‘Water’, so I decided to try and photograph ‘rain’ which involved being outside in the dark in a flimsy dress and standing under a freezing cold hosepipe when it was only 10C outside.   I won’t be doing that again in a hurry 😉  Resulting image here.

I also thought I’d try some hi-key photos with the last of the summer flowers from my garden.  These were much more pleasant to do, if a bit of a faff.


On balance it’s not been a bad week all things considered, though my mast cells are certainly on high alert from all the stress and over-exertion of the past few weeks.  I am seriously not sleeping, have nightly anxiety nightmares which leave me drenched in sweat and am getting up in the night for a pee, a sure sign my histamine is rampant.  My back and joints are also painful, which is probably a combination of my hormones, mast cells and the autumnal weather, and my appetite has gone through the roof (definitely menopause related!).  On the plus side I’m starting to feel more like a human being than road kill and at least have clean socks and undies now I’ve had chance to do some laundry 🙂

 

 

 

 

Weekly roundup

This week has been dominated by my hormones so I’m guessing my period will arrive shortly.  My cycles can be anything from 19 days to 31 days so I can no longer just look at my diary to know when it’s due and have to go off other clues.  Tuesday morning I woke up fine, got up and fed Bertie, made a brew and took it back to bed to watch the news.  I’m sitting there minding my own business when the world suddenly lurches to the right like I’ve been kicked in the head and I spend the next hour with the room spinning.  I hate shit like that!

I panicked a bit, because that night I’d agreed to do a talk to my Camera Club’s beginner’s class which I knew I couldn’t do if I were dizzy, but luckily it wore off and I was able to go although I felt spaced out for most of the day.

Wednesday was the first warm, sunny day we’d had in weeks so my friend and I decided to visit a nature reserve where she looked at plants (she’s doing a botany course) and I sat and photographed dragonflies.  We were the only people there the entire afternoon.  The birds were singing, the insects were buzzing, we took a picnic………..and it was heavenly.  I swear, days don’t get much better than that in my world and it did me the power of good even if I did get sunburnt.
My friend: do you want some suntan lotion for your arms?
Me: No thanks, my arms never go red.  #lookinglikealorrydriver

Friday I woke with a migraine which is still lingering this morning.  I had a really busy day planned and just carried on regardless, which was hard work when it felt like there was someone in my brain with a pick axe, and I was so sick Friday night I couldn’t eat a thing.

This morning I’ve woken with endo-related period pain, the dizziness is back and I feel generally fluey and crap.  I am SO over this peri-menopause malarkey.  It’s not like I’m having a horrendous time compared to the horror stories I’ve read about online, but it’s been 5 years of symptoms now and I’ve just had enough.  I’m over the hormone induced migraines.  The feeling extra exhausted.  The joint pain.  The forgetfulness and confusion.  The nausea.   The nipple pain which feels like I’ve been stung by bees.  The swollen stomach which makes me look pregnant.  The ravenous appetite which has made me gain 8lbs in six months.  The never-ending peeing.  The constantly swollen breasts that feel like bowling balls.  And I’m absolutely over the endometriosis, which I know won’t go away after Menopause but which at least won’t ramp up every 3-4 weeks until I feel like my entire pelvis is on fire.  I’m 50 shortly and after 5 years of declining hormones surely to God the end can’t be too far off.  Can it?!

Normal test results

I’m the healthiest sick person you’ll ever meet.  Despite having Spinal Stenosis, MCAD and EDS from birth, M.E., Histamine Intolerance, Endometriosis and Adenomyosis 98% of all my test results have come back “normal”, at least according to my Doctors.  It will not surprise you that my response to that is “knickers!”.

When I was 11 I was climbing in some outbuildings and fell from the first floor onto the bonnet of a car, after which I developed back pain.  For the next 5 years I went backwards and forwards to the hospital who could find no reason for my symptoms.  X-ray results were “normal” and eventually I was told I was “attention seeking” and needed to see a shrink.  I refused and demanded a second opinion from an Orthopaed at a decent hospital 90 miles away (I was bolshy even at 16 😉 ).  Within 48 hours of being admitted they discovered I had been born with rare congenital spinal stenosis and urgently needed a laminectomy.  The fall wasn’t the cause of my back issue but had just aggravated a pre-existing condition.

This was my first experience that Doctors aren’t Gods and sometimes get it wrong and over the coming years I was to discover that they get it wrong more often than any of us would like.

It’s only in the past 5 years or so that NHS patients in the UK have been given access to their test results.  Historically, GPs would take loads of blood, not even tell you what you were being tested for and the results were sent back to the GP who only ever rang you if something abnormal was discovered.  But a GP’s idea of “normal” results and my idea of “normal” results seem to differ.

As I’ve discussed recently here on my blog, at the tail end of last year I started having symptoms of anaemia so asked my GP to check my iron levels.  They came back 1 point above the very bottom rung of “normal” (normal range 17-160 according to my lab sheet, and my result was 18), so my GP considered that fine.  Only of course it wasn’t fine because I was having symptoms.  I took it upon myself to start some supplements and within a week the pallor, exhaustion and daily dizziness I’d had for months vanished.  But if hadn’t gone to the surgery to request a print-out of my results and seen that my levels were low my GP would have just said everything was “normal”, I wouldn’t have tried the supplements and would have continued to feel like death warmed up.

When I saw Dr Seneviratne for my histamine/creatinine test it was high but within the “normal” range (normal is 34-177 and mine was 140).  However I’d been on a low histamine diet for 4 months at that stage, which one would hope would lower my histamine load and therefore skew the result, plus was symptomatic (at the time of testing my bum was covered in hives).  So thankfully Dr S still diagnosed me with “probable” MCAD because my history fairly conclusively suggested it.  But not all Doctors think like that – they see “normal” test results and rely on those, even when all the evidence is pointing towards there being a problem.

I’ve had severe gynae pain since the day I started my periods and over the years have had various tests and scans all of which were “normal”.  Well, apart from the fact my first ovarian scan showed a 2cm cyst which I was told was cyclical (they know this how?!) and 12 years later my second ovarian scan showed a 5cm cyst.  Turns out I have polysystic ovaries and due to my endo some were blood filled and when they burst caused excruciating pain and adhesions :-/  My first pelvic MRI at my local hospital showed absolutely nothing untoward, yet an MRI at a specialist endo centre six months later showed extensive endometriosis which even I could see on the scan!  So it turned out that the excruciating pain I’d lived with for the better part of 40 years wasn’t “normal” after all and I needed an urgent hysterectomy.

Anyone with Hypermobile Ehlers-Danlos Syndrome will tell you how painful and disabling the condition can be, yet nothing shows up on tests.  Genes and skin are normal, as are scans and x-rays.  Before I suspected hEDS I was told by medical staff that I was just “sensitive to pain” which made me feel like a total loser – little did they know I lived with pain most days that would have a healthy person reaching for the Vicodin and I did it without so much as a murmur, so far from being sensitive to pain the opposite was, in fact, true.

Here’s the thing I wish Doctors took more on board – if a person is having symptoms there is a problem, even if test results look “normal”.  I wish they’d listen more to what we’re telling them, take a full history and trust that we know our bodies better than they do.  What is “normal” for a 6ft 4″, 16 stone, male, thirtysomething rugby player might not be “normal” for a 5Ft, 7stone, teenage girl.

Back pain at the age of 11 is not “normal”.  Gynae pain so severe you’re curled up in the foetal position every month is not “normal”.  Fainting is not “normal”.  Widespread pain is not “normal”.  Seizures are not “normal”.  Fatigue which puts you in bed by 4pm every day is not “normal”.  Collapsing after every meal is not “normal”.  Flushing is not “normal”.  Daily nausea is not “normal”.   I don’t care that all my tests indicated nothing was  wrong, because something clearly was and it wasn’t something trivial to cause that much havoc.

My cynicism towards the medical profession is now legendary – that’s what comes of being fobbed off or 40 years that all is well.  In the end, I had to guess what my diseases were and inform my Doctors, who then did the relevant tests which, surprise!, came back not normal in any way 😉  I trusted my instincts, even though when I was younger I didn’t have enough confidence to challenge my Doctors.  I know there are some people who are hyper-vigilant and obsessive and who think they have some dreaded disease from every little ache, pain and niggle (I’ve met some of them online!) but I know my personality and know that I’m not a drama queen or someone who focuses abnormally on my body (again, the opposite is true and I actually ignore symptoms when I really shouldn’t!).

These days I’ve gained a fair bit of knowledge about my body and I know what’s normal for me and what’s not.  If I’m not happy with a consultation I’ll research the best doctor to see and request a referral even if it’s hundreds of miles away (which is my legal right).  I request a copy of my test results and will push for treatment or further testing if I think it’s needed.  After all, I’m the one who has to live in my body and suffer my symptoms, not my Doctor.

 

Anaemia

I’ve been feeling really washed out the past couple of months and my get up and go has got up and gone.  Both ME and EDS cause “fatigue” but I’ve had both for so long that I know what that exhaustion feels like and my current waffy-ness feels different.  I’ve also been dizzy……a lot.  I do suffer from dizziness as part of my existing conditions, but only for the odd day now and then and it’s usually so severe I can’t get out of bed.  My current dizziness is milder but ever present and each time I turn my head the world tilts slightly on its axis.  Plus I’m not sleeping.  I’ve had insomnia for over 2 decades but again this feels different and I just have a niggle that “summat’s up”.

Of course I am peri-menopausal and fatigue, dizziness and insomnia are simply part of the bag for many women.  But then so is anaemia especially if your periods are heavy, and mine are definitely heavier than they used to be.  There are various types of anaemia, but in menstruating women iron deficiency anaemia is the most common so I made an appointment to see the nurse today to get my bloods checked.

I have just about every risk factor for anaemia going:

1.   Peri-menopause/Menopause

Any menstruating woman can be at risk from anaemia, particularly if she has heavy periods.

2.   Endometriosis

I’m not just bleeding from my uterus every month, I’m also bleeding into my pelvic cavity because I have endometriosis.

3. MCAS

Anaemia is the most common issue affecting red blood cells in MCAS patients.  See Lisa’s excellent post written on this issue over at Mastattack.org

4. Gastritis

Any type of inflammatory stomach or intestinal disorder can cause anaemia, eg. gastritis, ulcers, diverticulitis, crohn’s disease, colitis, coeliac disease, GERD (ie acid reflux).

5. Drugs used to treat GERD

PPIs, H2 blockers and antacids can all interfere with iron absorption and I have been swigging Gaviscon and Rennies recently like they’re going out of fashion on top of taking an H2 antihistamine.

4. Diet

I’ve been pesco-vegetarian for nearly 30 years.  Before getting Histamine Intolerance I was very careful to eat a wide range of high iron vegetarian foods but since getting HIT and having to eat low histamine I’ve had to remove many of these from my diet, eg. spinach, soya beans, kidney beans, dried fruit, cashew nuts.

Diet deserves special mention.  People with ME, EDS, HIT and/or mast cell diseases are often on restricted diets of one kind or another.  Here in the UK we hardly ever get to see a Dietician, so are left to try and work out our food issues alone.  We often don’t have the skills or knowledge to decide if we’re eating enough of the right foods to give us all the vitamins and minerals we need, so it’s really important to have our bloods checked once a year just to make sure we’re not deficient (I was shocked to learn today that I hadn’t had a full blood work up since 2014 despite all the various issues I’ve had in the past year or two!).

I won’t get my results back until early next week, so I’ll keep you posted.  For those of a religious disposition please pray I’m not anaemic and don’t need iron tablets.  My poop is the only thing in my entire digestive tract which is currently normal so the last thing I need is to not be able to go-potty for days on end! 😉