Update on my treatment plan and Turmeric Shot

[Blonde25]

Hi everyone

last time I had my Peg injection , I was suffering from aching throbbing hips and legs .

I've been taking a fresh turmeric shot that I make up and leave in the fridge and take it first thing in the morning .

I'm pleased to say it appears to be working.

I took the peg injection on Friday and I've had mild symptoms so fingers crossed I'm getting use to it .

The phone consultation on Friday with my consultant team said my bloods are the same has last time.

She said I don't need a venesection at this time and that my bloods are ok and not rising so the peg must be working and preventing an increase and to continue with the plan for another 6 weeks .

I asked for my lab reports and she said they will be sent to the GP . I should receive the letter shortly .

I also asked about the MF 1/3 that was on my last GP letter sent to me , she said there were some fibrosis on the BMB but not enough to diagnose mylofibrosis and that it is usual to have mild fibrosis with PV diagnosis.

My brain scan was clear 🙏

I'm going for a heart MRI on the 4th April so I should know what's going on with my heart abnormalities.

Take care everyone

[Hopetohelp]

Well done on achieving all that you have done. Interesting about the turmeric thanks. Peg held my figures at bay for a long time before they started to come down so be patient I am sure it will work. With reference to getting your blood test results, I found I had better luck phoning/ emailing the secretaries and quoting my mrn number and asking them to send them by email to me. I get the complete works. If I asked my haematologist I got the same answer and the gp letter only gives a summary. I guess the haematologists need to save their time for important stuff and leave the admin bits to clerical staff

[Blonde25 in reply to Hopetohelp]

Thank you for your reply .

Yes fingers crossed the peg will lower my blood counts eventually.

Thank you i will try to find out who is the consultant secretary so I could ask them to email me the lab reports .

Take care

[hunter5582]

Glad to hear to good reports. Also that your turmeric shots seem to be helping. Hopefully the heart scan will come back with positive results too.

There have been mixed reports from folks about access to the patient portal where you can look up your labs yourself. I have direct access to my labs and reports at all of my providers. Others in the NHS can give better guidance on this. Here is the link I think is correct of you are interested. nhs.uk/using-the-nhs/about-....

All the best.

[Blonde25 in reply to hunter5582]

Thanks for your reply hunter and the the link , I have the NHS App but I haven't got full access yet . I will ask the GP to give me full access if my area I live supports this 😊

Thanks again hunter , you are always the book of knowledge on this site and i really appreciate it 😊

[MPort in reply to hunter5582]

Hi Hunter, as far as I know the patient access to records is restricted to GP. I have been using that for some time and it is very useful. The only issue is it only shows test results etc generated by the GP practice. So when I have blood tests at the hospital they are not on it.

[hunter5582 in reply to MPort]

You have a legal right in the UK to access all of your health records. You can access andy and all of your records whenever you wish. Access is not limited to your GP nor do you need any provider's permission to access your records. Access to one's own medical records is a fundamental patient right.

"Under the Data Protection Act (DPA) 2018 and General Data Protection Regulation (GDPR) individuals have a legal right to apply for access to health information held about them. This is a “Subject Access Request”. It includes NHS or private health records held by a GP, optician or dentist, or by a hospital." commonslibrary.parliament.u...

I am afraid I do not know how the different parts of the NHS provide access to records. Some have reported that they could not access to their labs and reports on their patient portal. Some have had to request hard copies of the medical records. Regardless of how you access your medical records, know that you have a fundamental right to access all parts of your records.

[katiewalsh]

Hi. Glad you’re feeling so well. In case you don’t know, Tumeric can affect our ability to clot or not clot. Dr Claire Harrison & others have written about the possible risks. Katie

[Roxanne22 in reply to katiewalsh]

Hi Katie, Wonder where would I find a link to that from Claire Harrison on the tumeric pls? - anti inflammatory spices are a key part of my protocol as I favour the natural approach at this moment, so I also ensure to take cinnamon and omega 3 oils supp daily to help with the inevitable clot risks. thanks Blonde25 for sharing your experiences as well.

[Blonde25 in reply to katiewalsh]

Hi kate

Thank you for your reply .

I did tell the consultant that I was taking turmeric shot and explained how I make it .

She said it was ok but to not take anymore than what I'm using because it can interfere with my treatment.

I didn't know about the clotting risks so be helpful if you could put a link on here if you have one so I could read about it

Thanks in advance

[Anouchka]

Good going and all the best for the MRI.

[Wyebird]

so glad things are looking up

[katiewalsh]

I’m sorry but I don’t have a link I can post. I learned about it through research & then someone on here asked, I think Maz, if we could get Claire Harrison to weigh in in it. You might ask Maz if she knows.