Hormone Therapy and Vitamin B12

I have had an increase in fatigue since radiotherapy. Not much, just enough to be noticed.

Given what you have said above, though, I am going to have a chat with my pharmacist about B12 supplements, keeping a visit to a well-trained GP in reserve. 

My fatigue, whilst increasing slightly, has not "really ramped up", so I think this slower approach might be justified. 

 moonrakerz thank you for bringing this to our attention. It might help a lot of us. 

Can a ask how were blood levels were ? I had a test on Tuesday and apparently mine red cells are low after researching it it seems ht and radiotherapy can effect bloods       

I had 2 other readings described as "abnormal" - but the readings quoted were within the tolerances quoted.  ???  With my very limited medical knowledge I could see a possible link with the B12 problem so I let those pass. 

I have had problems with my GP surgery already. A recent PSA sample was rejected by the testing Lab as "unsatisfactory". This was reported back to my Surgery where is was filed away as "Test result - Unsuitable specimen Report, Satisfactory, No Further Action (Patient Informed)." 

I was not "informed" until a week later when my CNS phoned me and told me that my next follow up appointment was cancelled as she had no up to date PSA results ! I was not amused. I finally had that appointment last week - 7 weeks late.

I now scrutinise everything from my GP with a somewhat jaundiced eye ! (I think I was OK for jaundice)

We are told not to consult Dr Google......................but I have been surprised how much valuable information is publicly available online from NICE and various NHS trusts. 

Finally, one of the listed causes of B12 deficiency is now the recreational use of Nitrous Oxide (laughing gas) - funny old world, 'aint it ?

This is interesting. When the GP ran some general bloods for my husband back in April, as well as his slightly raised PSA he was B12, folate and iron deficient, as well as having low neutrophils. Unfortunately the GP declined to do anything about these because he was being referred to the hospital and we have not yet seen anybody at the hospital who is able to get to grips with them.

In the meantime I have put him on B12 and B complex(for the folate) and we will see how we go.

He has been on Orgovyx since 21 August and he's having terrible side effects for which the specialist nurse he spoke to told him there are no remedies.

Cheers mate my readings were only slightly low but I have cml so I guess I need the talk to my consultant hope you get sorted soon

Good morning ansteynomad 

I think there is a National problem here as to who takes responsibility for our health. As we get older things fail or fall off and we need more attention from our GP and the hospital. I am aware that there should be a " shared agreement" between the hospital and GP for say Hormone Injections but the rest of our associated health issues appear to be a "grey" area.

Early on in my cancer journey I had "issues" with my GP practice and they admitted when it comes to "complex cases" all the problems are not always taken into account and they recognised I was pro-active and took an interest in my own health. Mine is quite a big group practice but they have now got their act together.

I was in the other week having my annual medication review. My Consultant has contacted the GP with a couple of medication amendments/additions and we sorted that out. (I have been on weekly B12 tablets - prescribed by the GP for over 2 years).

The parting comment from the GP was "it's my job to keep you alive long enough for the cancer to get you - let's keep working together on this".

I think I am one of the lucky ones with a great Consultant and a very understanding GP practice.

Best wishes - Brian.

You are indeed one of the lucky ones Brian.

My GP practice is hopeless. When my PSA test early last year indicated recurrence they posted the result "normal - no action required". If I wasn't in the habit of checking my record online after each test / incident I'd be happily plodding along unaware of the problem. 

I'd strongly encourage everyone to get access to their records and keep an eye on things.

Derek.

I agree that there is a lot of useful information available from the standard NHS website as well as various NHS trusts.  

As far as B12 goes, the NHS website advises that good sources of it can be found in meat, fish, cheese & eggs - all food types (apart from fish) which we are advised to limit!  As B12 isn't found naturally in fruit, vegetables and grains vegans may not get enough of it.

As diet can play an important part in our overall health & especially in recovery after treatment that's now got me wondering if seeing a dietician as part of the overall treatment plan should be part of the norm?

Yes indeed, but there are several other medical conditions, equally possible, which stop the body capturing the B12 - you can eat vast quantities of the right foods but your body won't absorb it. In my case (I had become so fatigued) I was not prepared to spend 3 + months on supplements to see if my diet was lacking - if it wasn't, I would be exactly where I am now. That was why I pressed for immediate B12 injections now, that should fairly quickly tell if my additional fatigue is caused by the  B12 deficiency. If it is, the cause of it can be investigated in slower time.

I do eat plenty of the good stuff anyway - I could never go Vegan !!

UPDATE

I finished my 2 week course of B12 injections 10 days ago - I have to say that I do feel markedly better, not only physically but mentally too.  Last week I walked over 2.5 miles on one day - a few weeks back and that would have been totally impossible. I am now on B12 jabs every 3 months.

Just in case the B12 was not the root of my fatigue I also asked my GP if they could put me on monthly Prostap jabs instead of 3 monthly. They said they couldn't do that - and, anyway, they were soon going to put everyone on 6 monthly jabs .......... unhelpful to say the least ! They have the original letter (as do I !) from the Urology team saying that I could be on 1 or 3 monthly Prostap for my HT, but now won't accept that as sufficient to change............but they seem to be happy to shift me to 6 monthly with no authority whatsoever from above..... or consulting the patient ???

I then rang my CNS and related the story to her - she sent a letter to my GP that day and I now have 1 monthly Prostap prescribed for me. 

Why do GP surgeries seem to go out of their way to make everything so difficult ??

I'll say it again - if you are on HT and are very fatigued get your B12 levels checked........ 

My local hospital: "Salisbury NHS Foundation Trust has been recognized as the highest scoring hospital in England for staff looking forward to going to work, according to the National NHS Staff Survey."

Not surprised - great hospital !