Specialist nurse called me this morning to tell me to reduce my Hydroxycarbamide Saturday and Sunday because my red cells are now too few and she wondered how I was feeling? I'm tired, not sleeping too well, breathless, can't walk and talk at the same time without panting but manage well at my Circuit Training and Pilates every week, weird eh? and have just suffered another 4 days/nights long headache. Another bloodtest to do in a month to see if the reduction helps and she says I will have an appointment before November with the Consultant.
Pleased in a way after being worried about my consultant appointments going from 3 monthly to annually, at least they are still picking up on things, oh but these headaches are really not good. Going to try and get a GP appointment on her advice to try to get something that actually works. Paracetamol and Dihydrocodeine doesn't touch it for me. Sleep, I need sleep.
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Mica11
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great that your platelets are in range. As we all know, the downside with hydrea unfortunately is it can lower all cell counts. That worked in my favour, as it also lowered my elevated haemagloben/haematocrit levels. Hopefully the adjusted dose will bring the red counts back up without affecting your platelets too much. At a count of ‘256’ you’ve got some room to play with. My platelets remain stable on hydrea at around 350.
Your headaches sound quite troublesome and I would really persist on getting some answers. It’s worth noting, you can have headaches associated with anaemia, but it’s no good second guessing these things. I think making an appointment with your GP to discuss this is a good idea. It’s important to be vigilant and also maintain a good quality of life.
Thank you Mary, it's a balancing game now, you are right. My specialist nurse said we have room to adjust to try to bring my red cells back up a bit. Now to arrange that GP appointment because I'm totally useless and very grumpy when I have the headaches and the dog doesn't like his walks being cut short either! Grace X
Wow you have an annual appt. with your haematologist I’m amazed that’s a long wait. Can you not ask to see him/her sooner as you are having these headaches. My gp is really good but doesn’t deal With anything ET related as that’s the heamos dept. As he is the one dealing with the condition. I do hope you get some relief soon , but if it continues I would certainly request a clinic visit.
Yes Sandy, I was classed as under control with few problems and was moved to annual visits last November, NHS cuts! I had a few of these headaches back when I was seeing him 3 monthly, he said to see my GP who gave me the dihydrocodeine. It was actually my GP who flagged up my red blood cells with Haematology Dept after he saw my counts the bloodtest before last. The letter I got from the hospital said all was satisfactory. The GP told me to come in for another bloodtest and he would get on to the consultant himself. Have to say I'm pleased with how vigilant my GP is being and specialist MPN nurse told me to see my GP for the headaches. Grace X
Good GP, Our conditions are worthy of more than one visit per year especially when you are getting problems......I have found over many years that you have to push if things are not feeling right....you know how you feel, and need to get some answers to your headaches. Maybe it's your anemia giving you problems it certainly makes me breathless , The haematologist is addressing that as I am having erythropoietin injections plus iron tablets which is bringing my heamaglobin up. As he says to me it's a balancing act with counts.
So hopefully when you get an appt with him/her you will gets some answers.
Ps. I know just what you mean about the garden , I got my veg plants in ,
looking good ...till we got all this lovely rain now the weeds are taller than my veg plants. Never mind I just garden when I have some energy!!!!'
I am not losing sleep over the state of the garden, no point, I will do what I can when summer finally decides to visit and then I will moan about being covered head to toe in factor 50 , long sleeves and covered legs...and don't get me started on my really weird looking black sun block hat that can be scrunched into any shape you like! Haha! Eat your heart out Audrey Hepburn!
I agree with the others. Headaches are very symptomatic with our conditions. That's how I was first diagnosed with ET. Please try to see your specialist to figure out what is going on.
Hi, yes it is reassuring to hear they picked up your low counts. Headaches lots of fantastic meds out there. I’m on Migraleve which stop my headaches in their track. I’m also now on stuff to help me sleep. I got to a stage I couldn’t function on no sleep. GP appointment is needed. Look after yourself xx
Hi Eleanor, I was also having sleep problems and GP gave me amitryptiline, it works great but I have been trying to sleep without it, sometimes ok, sometimes not because one of the side effects seems to be a craving for sweet things which does me no favours at all. I shall discuss this too when I get an appointment. I am being as lazy as possible but not always managing, living alone with my big hairy beast who has vet visits going on at the moment too and a garden, out of control with all this rain! Grace X
Try some natural remedies, Mica. They don’t further tax our system and they work. I am anaemic from birth. I eat a portion liver 1-2x per week. That keeps my RBCs up close to, sometimes in lower normal range. I feel your walking and talking problem with breath! Cheers
I do get very upset about the breathlessness having always been very physically active. I manage my PIlates and Circuit Training every week but tried swimming too and ended up after 3/4 of a length, turned over and had to float until I could breathe again, it was so scary, just couldn't get my lungs to take anything in for a few moments. Gave up on the swimming! Haven't eaten liver for years and I suspect it would end up in the dog! Grace X
I do not go swimming for that reason. We have a boat and we swim from it. I now keep myself tied to a rope near the boat and do water exercises next to the ladder. Weakness can hit at any time and it comes in seconds. Just now I had a great morning and lots of energy. There was some stress. Driving home, the car became warmer (30 degrees already) and getting out, up the stairs, the brain fog set in and now I’m lying flat on the couch with my feet up. Zonked! The weather’s been crazy. May was really cold here in Austria. Now we have 33-34 degrees every day! My body isn’t handling it. I’m on Anagrelid and it gives me heart palpitations on top of it. Perhaps that’s the bigger problem.
I love your sense of humour. My dog goes ballistic when she smells the liver cooking! They know what’s good. Most animals eat the liver of their prey first. We’ve changed our taste buds! If you want to take a chance with it, try it fried lightly, then some lemon, good Greek olive oil and oregano! The Greeks also cut it in pieces, fry, add beaten eggs and more olive oil and oregano. Yum.
I may just have to buy some and give it a go. Your recipe does sound lovely It certainly won't go to waste, the hairy dustbin will get more than his fair share and he will worship at my feet for all the time it takes to cook....
Had a tiring day. I went and completed my level 1 in Reiki. I am now armed and dangerous with the 'knowledge' to practice on myself and friends and family. I'll be throwing them on the sofa and laying on of hands will be attempted. Until I start to 'feel' it myself or get feedback from my hostages, I will feel like I am playing at it. Oh spooky! I've pressed something and I have no idea what! Please tell me this writing is now all sloping to the right?......Haha! I've lost the plot. Grace X
Grace, you are hilarious! Thank you so much for that! Hm..... Reike sounds fab! Go for it! And now I will attempt a long restful shut eye!! Good night!
Testing, testing! Oh I am upright and straight again, Yay! Hope you had a good sleep. I did, feeling good, got the day to myself, first one in ages I've had nothing on and it's currently not raining. Have a good weekend! Grace X
Oh no. Mine low as well received letter yesterday. Wondered why so fatigue headaches too. I’ve only been on Hrdroxy over 7 months. Iron was on a good level.
Sorry to hear you have it too Helena despite eating healthily. I try to eat healthily, don't always manage it. Sometimes I just have to have what I fancy. It's a juggling act, getting all the balls in the right place. The Doc is on the case! I am today headache free and have a big smile on my face. That'll do for me right now.
I have been trying to get my head in the right place to acknowledge how I feel on a day to day basis. Two days ago I was suffering my headache, very tired and so I didn't do much. I've stopped beating myself up about my lazy days and just rejoice on my better ones. We can only do our best and that's enough.
Hi Mica 113 litres Spring Water per day with one Grain of Celric Salt, every 15 mins 3 mouthfuls at a time....those Headaches will go...you are lacking Magnesium Celtic has 3 MAGNESIUMS...
HIMALAYAN NOT SO MUCH...BUT IS A GOOD SALT...DO NOT USE ORDINARY TABLE SALT....
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low platelets
Biddy Platelets 
Here comes a rant!
Good news!!
How long for hydroxyurea to lower platelets? 
