not diagnosed, having a rough day

[Dogruff]

my platelets have been consistently high all year. Initially it was thought it was due to iron deficiency but that has cleared and my platelets have increased. I’m at the stage where the GP have done the whole hog on tests and not a thing has been found that could be causing the thrombocytosis so now I’m waiting on haematology.

I’m still holding out the hope that something minor and fixable will be found.

however- today I’m struggling. I have the mildest of upper respiratory tract infections (3rd in 6 weeks) and while that is only more a nuisance, the pains all over especially my hands and feet is consuming. It’s not like the normal flu type aches. The best way I could describe it earlier was like I had dunked my legs in an ice bath and stayed there.

The only thing I can take is paracetamol as I’m breastfeeding and I was so desperate I actually ordered some on Deliveroo rather than walk the 100yards to the shop. That’s how awful I feel.

I have no idea how I managed to take care of my 10 month old & keep him fed and entertained.

What little things do people do to alleviate the pain? I did find keeping wrapped up more than usual helpful today. And food seemed to help too. I’m limited on time and money due to being a single mum so doing things like a yoga class is unachievable at present.

[MissLesley13]

You sound like you are doing your best at what you can. A lot of people will say what helped with them, but I do think at the beginning it is crap as your body is misbehaving. It also took a while for me to get the diagnosis and to tell you the total truth. I still have the bone pain the chronic fatigue etc. It does make it feel normal if you know what I mean though. It means you can tell yourself I feel like this today because my body is feeling like this. My consultant explained to me a couple of years ago that when platelets are really high it is like normal people's blood would run like water. Mine was running as an extra thick milkshake . This was a way to explain to me that even my blood was sluggish and slow . I have tried to keep up with what I used to do but I now have learned that I will attempt some task for 5 mins . The next day 6 mins. This is my way of understanding the limits that the heaviness of my arms legs etc can cope with. I do also take multivitamins now and I have increased a lot of my veg and fruit intake. Although the one thing that keeps me going is full fat coca cola. This is probably not the health advice you are after but I just wanted to reach out. Keep being amazing

[Dogruff in reply to MissLesley13]

The coke thing made me giggle. I’m a McDonald’s Diet Coke fiend but I’m watching my caffeine intake with breastfeeding. My little one is turbocharged with energy already 😂 Even his nursery haven’t come across the likes of him being so young and barely sleeping during the day (thankfully he has 12hrs at night!).

I’m a lot better today. The expensive Deliveroo for paracetamol has helped. I’m always surprised by how effective it is for the level of pain I’m in. Everyone in hospital was mystified at how effective it was post natal while I was in hospital. We were in for 10 days as we were both ill. I was in severe all over pain & it killed my mobility but give me paracetamol and I was mobile again. In the hour leading up to the next one I was walking against a fast flowing river again. It now makes sense as my platelets were probably up through the roof for the type of pain I was getting following infection. I really need to arrange my birth debrief so I can ask more questions about my platelets at the time.

I’m used to the one day I do better at something than the next. I’ve been blessed with being ragingly neurodivergent also so predicting how a day will be is like trying to get the correct lottery numbers.

I get the diagnosis makes you feel normal. I was joking to the GP that my body was probably being weird and my brain being histrionic and it will be nothing but she sternly said “no, there is something definitely not right and this doesn’t happen for no reason so your symptoms are coming from something.” I’m just utterly useless at not knowing for sure as there is only so much researching I can do while waiting (autism means I need to know EVERYTHING!). As I’ve had sepsis I was putting everything down to post sepsis syndrome and was really chasing that diagnosis incase I go down the PIP route due to the cumulative effect of various disabilities and to defend myself at work as they aren’t the best with implementing reasonable adjustments.

I’m super glad I have my mini one to keep me occupied, entertained and motivated to be well. He won’t give me much time to dwell. I just really want to be sure so I don’t unnecessarily give up my McDonald’s habit

[ETket]

That sounds quite grim and must be tough looking after a small child on your own.

[Dogruff in reply to ETket]

It’s such hard work. I really don’t know how I was managing when I had work too. I’m a lot kinder to myself about how much I struggled then. I’m blessed he is at nursery/daycare a couple of days a week for now so it keeps me some time to try get the basics done. But honestly, I’m drowning at times yet i still have a very content happy boy. He gives me the motivation to look after myself

[ETket in reply to Dogruff]

It will eventually get easier but those early years with a small child are tough (I now have an eighteen year old - which means a whole load of different worries!).

[Trocken]

I can’t add much to the other posts, other than to say I complete get what your saying. I don’t know if you’re aware but with ET, your platelet count will have dropped whilst you were pregnant and will rise again after the birth of your son. I was undiagnosed during both pregnancies but this helped with my diagnosis some 12 years after the birth of my first child. I had an eclamptic seizure with my first and with my second was clotting straight after giving birth and was pretty ill for sometime after as I was so anemic. Have they checked all your iron and b12 levels, I ask because when mine are low that heavy arm and leg feeling is always at its worse (i’m megoblastic anemic at the moment) as is the bone pain and general lack of energy.

How soon are you due to be seen by Haemotology?

[Dogruff in reply to Trocken]

Iron is back to normal a few months now. B12 was normal too. For months we were putting down the platelets to my ferritin levels but they improved and platelets got worse. That’s why we put off investigating further for a few months because of the likelihood that it was easily explained by iron being low.

I was only referred to haematology 2 weeks ago so it’s still in triage. My platelets are in the 500’s so I don’t think they will rush to see me for a long time.

I think you are right that pregnancy potentially masked it. I hadn’t been right for about 2yrs before I got pregnant however I had a crap GP surgery at the time so I’ve no idea what my bloods had been like. In fact a year beforehand the GP said I was in the menopause and will never get pregnant 😂

I did see there is a high risk of eclampsia with ET. So sorry this happened to you. That must have been utterly terrifying. I had pre-eclampsia so that’s how I ended up with an induction. We then had multiple emergencies culminating in sepsis and AKI for me and sepsis and respiratory complications for him. I was chasing a post sepsis syndrome diagnosis when my platelets were staying high. I really thought my issues were down to that so now I don’t know where I belong!

[saltmarsh]

Very sorry to hear about the health issues you're facing. But honestly, you're my hero. Dealing with all that and a 10 month old is a challenge. I was an old dad when my sons were born and that was enough of a challenge. It does sound like you're on a path to finding out what's going on and I wish you luck with that. I'm a broken record on the need for proper hydration - preferably water - and I drink most of mine in the morning. It probably won't address your issues but I do think it could help you feel better. Best wishes and congrats on your wonderful baby.

[Dogruff in reply to saltmarsh]

Thank you. It’s hard going- for now he still goes to nursery 4 days a week which is a blessing. I’m mostly gutted that often I’m too tired to do the fun things with him on his days off.

I’m still holding out hope for that minor thing that appears but I’m not finding that seems to happen once people get this far down the track. So I think I’ll be next looking at ways to best manage and conserve energy.

Im a seasoned pro at hydration! Im autistic so very rigid with what i will drink so it is just water with squash for me with the occassional fizzy drink and my ritual morning coffee. Overnight alone I probably drink near 1litre. Breastfeeding makes me work up a thirst! I go nowhere without my bottle of drink as I can’t bare the feeling of a dry mouth. And absolutely agree that fatigue is way worse when dehydrated.

Thank yoi for your best wishes. My boy is worth all the hard work. But definitely no hero- just stubborn and headstrong!

[MotanulLink]

Hi there ! I was so sad to read this in here , to go through so much and also look after a little baby … however hydration as Saltmarsh said is imperative, mainly water . Also read (and check with your Gp ) about Quercetin for your immune system and it’s also beneficial in lowering your platelets levels.

I wish you strength 🙏🏻

[Dogruff in reply to MotanulLink]

Thank you. I’m hydration queen already & I’m convinced that probably does help manage things as it is. I had a quick google of the quercetin and I’ll do a deep dive later. I did notice it has a mild interaction with one of my medications however I know enough to be able to research it and then let my GP know. I’m a prescriber within my profession and on one occassion a specialist was recommending a specific medication- GP hadn’t prescribed it once in his career so he asked me about interactions knowing I would have researched and i reeled it all off and could list what the specific interactions where and why so his response was “so is it safe for you” 😂 My ex midwife used to get me to do some pharmacology info dumping about my medications on her students during my appointments. So I’m a tad thorough when I research something so I will definitely look in to it in depth before committing!

[Dogruff]

my referral to haematology has been moved from the referral part of the nhs app. I can’t see it anymore so that means it’s been triaged and outcomed. No idea what the outcome is thanks to the hospital not being fully system integrated with the appts part yet.

It’s been triaged far quicker than I expected- their own estimated date was by 17th March.

Now the impatient wait for contact from them or from my GP with the what next.

[rebeccaxxx in reply to Dogruff]

I did find once i could take the 75mg aspirin a lot of my symptoms went away, I feel I did take it when breastfeeding but I could be misremembering. the aches and pains for me are caused by hyper mobility, could you have that going on also? Breastfeeding certainly made my joints much looser and i had a lot of wrist pain because of that.

It is a hard time, I was diagnosed after my second was born and had platelets in the 500s for years before then. Make sure you see a decent haematologist, if you do have ET. Some of them are awful, as it's so rare, and they can really give you dire information. there is a list of the good ones somewhere on this site. I go to Manchester and they are great.

[Dogruff in reply to rebeccaxxx]

Thank you. That gives me hope I won’t miss out on his childhood due to my naps!

Interesting point about hyper mobility- it does go hand in hand with autism. I’m in my 40s so any hyper mobility would be well masked at this stage! But could be a potential.

There is an MPN team at the nearest oncology service so if it is ET then I’m hoping pathway is transfer to them. Otherwise I’ll request it as travel wise it would make no difference at all for me.

[rebeccaxxx in reply to Dogruff]

good luck!

[Dogruff in reply to rebeccaxxx]

Thank you!