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.

 

 

 

 

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16 thoughts on “Anaemia update

  1. Glo

    I truly understand the frustration of arguing with doctors. Wish they would listen with an open mind. 😕. I just want to mention a couple of things. First iron for people who have had bariatric surgery. Very gentle on the stomach. I have mast cell and this is what I use for my anemia. Secondly, see if they will test your B12 levels. I have pernicious anemia and also experienced many of the things you are describing. I would sit down and cry because I was so exhausted. Also fell over a few times and brain fog constant. Plus I also have the weird nail split. No help from doctors there. I use tea tree oil, just a little, on my feet every day and this is actually clearing up. Seems so many times we have to find our own solutions to things. Just happy I don’t have a reaction to the oil. Now if only I could figure out what’s causing the rash on my belly. 🤔

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    1. Jak Post author

      I wish I knew! Our local doctors seem to be so swamped they can barely be bothered to speak to you let alone care why you’re there 😦

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  2. Ellie

    Ive got nail issues too, the Drs insisted it was a fungal infection so I insisted they test it – Lab results say its “normal”. So I have to live with two thumb nails that constantly disintegrate & fall off leaving raw, sore (at risk of infection) nail bed. Ive tried, iron, magnesium, multivitamins, gelatine & rubbing garlic & thyme oil on them. The only thing that works is taking biotin & MSM, & rubbing them twice a day with savlon which Im not (yet) allergic to but I find the perfumed smell overpoweringly offensive. Ive kind of got thumb nails now even it they look like a car wreck. Normal

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    1. Jak Post author

      My step-dad has horrendous toe nails. Very discoloured, constantly come away from the nail bed, brittle etc. yet like you there appears to be no fungal infection and no treatment has so far helped. Weird!

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  3. Karen, The Walking Allergy

    Hey Jak. Forgive me if ive said this all before… As you know, iron is a huge issue for me, too. And vitamin D is a problem for most Canadians, I expect Britons are the same. We have vitamin D drops. They’re in oil (safflower/rapeseed). One drop a day for 1000 i.u. Zero taste, nothing else in it. I can actually tolerate it very well.
    I tried a Lucky iron fish, but i simply dont cook enough. A friend with some similar challenges also uses a cast iron pot, she says it works well when she uses them regularly. Ive had two rounds of iron infusions, my ferritin went down to 3, and my hemoglobin was off normal before they’d risk the infusions. The effect they have on my mast cells was a shock- i felt well for a few hours… like as in ‘OMG THIS is what it feels like to be normal!?! I gotta be nicer to myself…” well. It didnt have as dramatic an effect as we went on, but I’m sure I’m missing all sorts of amino acids due to my low protien intake. (Im getting more and more very ‘wierd’ blood test results- I’m certain this is why my tryptase is low, my renin is low, etc. Still havent convinced my local docs on that; they can’t reconcile ‘Me’ and my test results- I dont look sick!). I know an iron infusion is not something you would risk, (to put it mildly). It’s definitely worth the effort to find a way to get that iron in there! If you find something that works, let me know! Id like to not have to wait until my blood counts are in the can before i do something about it.
    If you can’t get them in the UK, i will happily send u some (im guessing the fish is pretty easy to get, D -drops much harder…). Good luck!
    Karen
    PS. Read a report from my allergist this am… apparently i have ‘unlikely MCAS’. Arrgh! Apparently i have ideopathic anaphylaxis, and ideopathic urticaria, and ideopathic migraines, Raynaud’s, etc etc. Every time I get a doctor on board, they talk to an allergist and their practice ends up regressing. SOOOOO frustrating. I keep reminding myself that it was a means to an end, I’m getting what I need. I haven’t convinced myself just yet, I’m still angry.

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    1. Jak Post author

      I can imagine you want to scream Karen 😦 Have you considered sending the allergist or your doctor a copy of Afrin’s book on MCAS? Might not help but you never know!

      I’m going to have my blood work done on 7th Dec then try a new liquid iron I found at Holland & Barrett – I’ll let you know how it goes. x

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  4. danieljuk

    My Dad just blood tested to being Anaemic! It’s a huge shock because he is very healthy and had no signs of it! (nails fine etc) Because of his situation they are slightly concerned and doing a colonoscopy to rule out Bowel Cancer because this can be a early warning sign of it. It’s not extremely high but it’s over the normal levels and must be investigated before he is given iron or supplements for it. Weird though! good luck for you Jak

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    1. Jak Post author

      Thanks hon. Sorry to hear about your Dad. In women anaemia is mostly put down to blood loss from menstruation though of course men don’t have that so they have to find out how the blood loss is occurring. I do hope it’s nothing sinister – let me know how he gets on xoxo

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      1. danieljuk

        it turned out fine but you made such a good point about blood loss occurring! There are many NHS hospital groups in London and people tend to choose the best one for each specialism (and mostly avoid the local group which are not the best but did treat my Mum pretty well!). My Dad was sent to the Imperial Group and was seen at Charing Cross and St Mary’s for the tests and they are specialists in cancer and especially Bowel. He had the tests but also they asked him to be part of a test which is experimental currently. When someone has an investigation, they take a blood test before and see if they can predict if someone has bowel cancer. Dad took part in it and the investigation showed a few polyps that were removed and a large ulcer in his stomach which was treated with medication and he is much better. You never find out the results of the blood tests but they think they can look for hormones which show certain cancers. It would be SO much easier to blood test than have awful invasive procedures. Recently they talked about this experimental project on bbc news, 3 hospitals are doing it, it’s very early days currently, they are just seeing if the blood test matches the scope test results and Dad had to give permission for the experimental team to access his results which he was fine with. They were excellent to him though, I think it’s looking at Bowel and Prostrate and we know so many men who leave it for months / years with symptoms argh!

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  5. Lauren

    Hi!! I came across your blog and honestly our symptoms are so alike it’s scary. I’ve only read two of your entries so far but you’re a great writer and hilarious to boot and so I appreciate you putting your thoughts out into cyber space for all of us miserable sick folk to enjoy. In regards to your iron though- have you thought about maybe looking into thalassemia? I was diagnosed with a mild form at a really young age, and have struggled with doctors trying to put me on iron supplements ever since. Iron supplements actually make this disease worse because it’s not that your blood lacks iron, br rather an issue with your body not being able to make enough cells that are able to effectively use the free iron in your blood. I don’t know if that’s what’s up with your symptoms, but if you’re still in the dark maybe it could be something to look into! Thank you again for a truly inspiring and badass blog, and I’ll send good prayers your way for you to feel better (even if only temporarily right? lolol chronic pain can suck a big one)

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