Hi Mark

I don't remember noticing my potassium levels very much, so they must be OK, otherwise the Docs would have mentioned it.  Presumably you have another consultation with your GP or Haematology consultant coming up and I am sure they will be able to answer any questions you may have. 

Just a reminder - write your questions down on paper when you see a doctor, so you remember to ask about them.  Also, if I am expecting a change in treatment or advice, I get someone to come with me.  When you are concerned, your brain starts processing some info and it is reassuring to have someone to discuss with afterwards, who can reaffirm all the doctor said.

So basically ask - what happens now?  Is there something you can do to improve matters?  

Lastly, keep talking - we may not be able to solve the problem, but we can listen.

Maureen x

Hi Maureen 

Results were this morning, I am awaiting a call back to see what the consultant wants to do.

It appears my potassium did increase with my platelets over the past few bloods, but I was not made aware of this.

I did have a nice chat with Haematologist nurse, who answered a lot of questions over the phone. All positive regarding ET. But then dropped my potassium level in, which was a shock.

So awaiting my call back, thank you for your help.

Mark

You are very welcome Mark.

I have now remembered something else I did when first diagnosed and being treated.  I kept a diary, noting date of conversations, when drugs changed and how I felt.  When stuff is happening to us, sometimes it all begins to blur and 'Was it last week or the week before when....'?  'How long have I felt this....'?  It did help me feel 'in control' to be able to look back and see how I had progressed.

Maureen x

Thanks

I will do the same

Mark

Evening All.

Has anyone suffered with tingly hand sensation at all? Hands or anyone else? One of many ET common symptoms.

Bit like pins and needles, but not as intense. Suffered today just in right hand, from fingers to elbow.

I was worried and attended hospital, as haematologist department closed on weekends to ask.

I was checked over, had bloods taken. 

Nothing untoward found. On a positive my platelets today were 930 and potassium 3.9. Which was glad to hear. Dropped from 1289 and 6.1 on Wednesday.

Thanks and enjoy your Saturday evening 

Mark

Hi all I sometimes have tingly finger tips very mild when it happens 

after speaking to my consultant last Thursday and being told my platelets were coming down and keep doing what I was doing 

I then received a text from NHS that I should hav 4 jabs of vaccine and to contact my GP 

who told me that they didn't know why I received such a message has anyone else had this experience 

Thanks again to everyone and a very happy and peaceful Christmas to everyone 

Thanks Michael 

Hey Mark,

Sorry I've taken a while to respond, it's been a strange month for me too.

It seems like you've already been through so much, please remember that this is a condition that can be monitored send controlled and if you GP doesn't "get it" (for lack of better words) ask to speak to another who has more experience with blood disorders and cancers. You can email the practise manager and they will post you onto someone who will be more understanding.

I'm still waiting for my results for the "further tests" which after some research I've seen is probably the test to see if j have the JAK2 mutation and if a bone marrow biopsy is nessisary. That'll he the second week of Jan, so hopefully I'll know more then.

Ive been having issues with my time of month, going in for another blood test tomorrow to check my anemia levels so I'm glad the nurse mentioned that is important or i wouldn't have known.

I get how you feel, I'm 27 so I get being young with so much going on and how this can make you feel things are so much at the moment, but you've done really well reaching out and talking! Keep doing that! 

I'm so tiered all of the time, a bit worried about what the outcome will be from these tests but glad they are being done. But I think maybe you'll understand too how having a diagnosis like this so young feels really restricting and scary...but I joined a Facebook support group recently for people with ET in the UK and that's really helped my anxiety around all of this!

I hope you are doing as OK as you can be and that the kids are excited for Christmas! That's the best bit about Christmas, my sister has 5 kids and my partners sisters have 7 all together so I get the magic that comes along with their smiles at Christmas time!

Tru to focus on that, and making it magic for them and hope to hear from you soon!

L x

Hi Mark 

Simple answer is yes to tingling and yes fingers, toes, arm and worst case tingling numbness around side of my face. Started out as symptoms when doing tests before diagnosis then mostly mild while on meds.

I always contact emergency haematology when I get continued sensation and acute fatigue to get monitoring and check all ok. Usually a viral infection can stimulate these symptoms to be worse than they are. Always best tho to keep haematology in the loop and diary each time and it's strength. I would rather these symptoms tho than the life threatening ones 

I got booster but no invite for fourth jab, even while working for NHS.

Take care everyone over the festivities

Hi Michael

My surgery arranged my first vac.cinationc in March and then called me for a second one in June, follwed by a booster in October. I am hoping that I will be called to be given more doses when recommended, as the booster dose is not as much or as protective as a full vaccine.  I have also received a letter from the hospital to say I am immuno surpressed, presumably because of the ET.  I have been keeping at home mostly, only seeing family and specific close friends occasionally.

I am sure the hospital is recommending the vaccine for your wellbeing and if your surgery is not regularly doing vaccinations, I would suggest you register with the NHS for one of your nearest vaccination centres or chemists who are doing them.  However, you should do what is right for you.

Maureen 

Morning All,

Just spent 20 mins typing away to thank you all for your response, then I lost it all!!

My hand tingles and numbness have been put down to my levels of anxiety.

I discussed this last week with my GP who I have not spoken to regarding any of my health issues since May this year. He wanted to put me on Anti depressants, i spoke to my haematologist to ask if this was safe. She listened to my concerns and agreed that I am anxious. She recommended Kalms day tablets which other ET sufferers use for anxiety.

So I have started taking these instead of accepting anti depressants from the GP. Have to say early days, but I haven't suffered tingling this week. Also my Counsellor taught me some more ways to overcome anxiety.

L i do hope your tests go okay, they have diagnosed my mutation as Calr, without a biopsy. Whether I need any further investigation down the line, i have no idea. I just remember Maureen saying that this is like an Allergy, cannot be cured but can be controlled. 

I am hoping to go back to work in the new year, it won't be operational at first. But to get back into the work routine will get me out my house, where I have been sat around since May pondering about everything. 

Off to panto tonight at the Hawth Theatre with the family, getting into the festive spirits. 

May I wish you all a Happy Christmas and New year please keep in touch.

Thank you NM9309 

Thank you Maureen 

L x keep us updated.

Mark