[robert0439Participant]

Hi to Everyone,

In June of last year, I was diagnosed with smouldering Myeloma and have a session with my haematologist every 8 weeks.  During my last meeting, my blood test results revealed that I was low on levels of vitamin B12 and therefore, I am being asked to have a course of six injections, over a period of 12 days. Just wondered if anyone out there has had the same and did this raise their levels? Also, any comments on other blood number which were affected would be appreciated.

Thanks and regards,

Robert

[janwParticipant]

Hi Robert

I think it’s really good that your vitamin B levels are being monitored. I don’t think I’ve been told mine or my other vitamin levels such as vitamin D. I asked whether a B12 supplement would help boost my consistently low immunity levels, but didn’t get much of a response. I now take a multi B supplement on a daily basis which doesn’t appear to have helped my immunity levels.

There’s a general article in today’s Daily Mail on supplements, which states “as we age, the gut becomes less able to absorb vitamin B12 – found in meat, fish, cheese and eggs. Lack of vitamin B12 can lead to larger red blood cells and in turn can lead to tiredness, depression and memory problems which can be treated with B12 injections”. I wonder whether your blood test results showed a low red blood cell count or low haemoglobin levels? Perhaps your consultant will provide you with a print out of your blood test results prior and after your B12 injections, then you can ask whether the B12 injections have been effective. If you find out any more information, please let us know.

Regards
Jan

[robert0439Participant]

Hi Jan,

May thanks for your response.

Since I was diagnosed in June of last year, I have had five appointments with my haematologist and on each occasion, I have obtained copies of my blood test results. As a side issue, I am under the Derby Royal Hospital who I have to say, are excellent. Anyway, I am plotting in excel around 18 different items from these blood results which do include both red blood cell count and haemoglobin count, where both have always been consistently low.

Only on my last blood test was vitamin B12 measured which I assume was an additional check due to my red blood cell count and haemoglobin levels being low.

My current B12 level is around 160 pmol/mL which is supposedly a slight concern as the minimum reading should be around 200 pmol/mL and hence, the need for vitamin B12 injections which I have now arranged with my local surgery.

I don’t feel tired or fatigued and have always managed to sleep pretty well however, I do take quite a combination of nutrients in order to boost whatever I can as part of my “self help” regime.

My next hospital appointment is on 17th March where I can see from the blood test request sheet that I already have, that Vitamin B12 is included as a test. It will therefore, be interesting to see if my current level of B12 increases accordingly and I will of course keep you posted.

Thank you once again for your post.

Kind regards,

Robert

[robert0439Participant]

Hi Jan,

As promised in my last post, I thought I would send you a further update.

This morning I had a scheduled meeting with my haematologist at my local hospital. All my previously recorded paraprotein levels had been around 26 or 27 however, this time they had fallen to their lowest with a score of 24, so I was really pleased. As I have mentioned before, I am taking several supplements where the jury is still out on this subject for nearly all the medical fraternity, but if I feel that there is a minute benefit whether physically or psychologically, then I will continue to take them.

My vitamin B12 level was previously 160 where I believe that the normal range is around 200 – 900 picograms per milliliter (pg/mL). Following my course of six injections over a period of three weeks, the recorded level this time is 1183 pg/mL so a massive increase. Evidently, if there is too much B12 in your system, then the body just discards it.

I also had a reduced immune system with both red and white blood cell counts being low however, this time both counts had increased so all in all, I was quite pleased with my overall numbers.

My next review is now in 3 months time, so at least for the next few weeks, I can attempt to live a “normal” life.

Finally, I trust all is as well as can be with yourself.

Regards,

Robert

[janwParticipant]

Hi Robert

I can really understand why you are so pleased with your blood test results. Your drop in paraprotein level is excellent. Fingers crossed, your next results will be just as good. The B12 injections have certainly managed to raise your B12 levels. Are further injections going to be necessary to maintain your B12 levels, or was the one-off course sufficient? Do you know the actual strength of the injections?

I’m due to see my consultant this Thursday for my regular check-up. My neuts are still low at around 1.2 and my haemoglobin levels are dropping slightly, so I would like to know my B12 levels. However, I know my light chains will have increased significantly this time due to me suffering from the flu for the last three weeks. Hopefully, the light chains will reduce over the next couple of months as my body recovers from the virus. I think its been around 30 years since I last had the flu and I forgot just how rough, tired and poorly you feel! Like many others, the flu injection was not sufficient this year to protect me from the virus. It was totally my fault that I caught the virus, because I was complacent and sat in a GP’s waiting area for 20 minutes whilst the area was full of adults and children with coughs, sneezes and bugs. I was taking my elderly father to see his GP and with hindsight, I should have asked my brother to accompany my father or I should have waited outside.

I hope you relax and enjoy yourself over the next three months.

Regards
Jan

[robert0439Participant]

Hi Jan,

Thanks for your comments as they are really appreciated.

I’ve not really asked about any future B12 injections but will do this in due course. The health professional who administered the injections, did suggest that I may need a continuing top up every 3 months, which would be fine by me. My wife also tells me that my skin tone has changed for the better as previously, I looked quite pale. Anyway, all for the good here.

I’ve also had a look on my local surgery’s website, where I can see an order for Vitamin B12 was placed on my behalf. The dose is 1mg/1ml solution for injection ampoules, so hope this helps on the dosage that you are asking about.

My kappa light chain count had also fell this time however, my lambda light chain had also fallen but by a far larger ration and therefore, my kappa/lambda ratio was really high at 210 whereas previously, my ratio was down to 63, but you can’t win them all, can you?

Anyway, sorry to hear that you have not been feeling well with the flu, so hope you start to feel a little better soon.

Regards,

Robert

[janwParticipant]

Hi Robert
I hope your b12 injections are continuing to work for you.

As expected my light chains increased by over 300 due to the flu virus. Hopefully in the next 8 weeks they might decrease in time for my next hospital visit. I asked my consultant again about measuring my b12 levels, but was told that this was not routinely available when my blood cell count and kidney functions were ok. Which is a shame because my haemoglobin levels are falling slowly to 11 and my neuts constantly remain low at 1.1 to 1.4.

My elderly father has just been diagnosed with non iron related anaemia and part of his further blood tests are to monitor his b12 levels and his kidney functions.

Regards Jan

[robert0439Participant]

Hi Jan,

Sadly, I too have been suffering from a flu type virus for the last couple of weeks although saying this, I am now fortunately starting to come out the other end.

I started with a really high temperature(39.2 degrees C)  so call the local Myeloma help line who suggested that based on what I had to tell them, a visit to the hospital was needed. Must admit that I was treated pretty much immediately on the haematology ward where I had an examination, followed by blood tests and a chest X-Ray. I was given some antibiotics and pain killers and was discharged two hours later. A really superb service and I made my thoughts on this known to all on the ward who treated  me.

As I say, I am now feeling much better but it will be also interesting for me to see where my light chain numbers are following my next blood tests scheduled for early June.

Just as a comparison, my last blood tests indicated a kappa light chain reading of 260, a haemoglobin count of 120, and a Neutrophils count of 1.27.

I was sorry to hear the news of you father. I wish him well going forward,

Regards,

Robert

[janwParticipant]

Hi Robert

Sorry to hear you also had the flu virus. I hope you recover speedily, although I must admit that it’s taken me a good four weeks to feel my energy levels returning. Hopefully, you will not see your light chains increasing, because you have some time for your immune system to recover before your next appointment in June. However at your next hospital visit, it’s still worth mentioning to your consultant that you had a virus in March, which will be considered as a possible reason if your light chains do increase a little.

My father had the results of his blood tests today, which showed his B12 levels were OK but his kidneys were only functioning at 18%. He now has to wait for a hospital referral to see a kidney consultant. At least he now has a reason to why he has been feeling poorly, tired and being sick.

Regards
Jan

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