B12 , any links to paraprotein and light chains

[PamBow]

I had a blood test that shows a rise from 9 to 11 for paraprotein in the blood sample. I am being monitored ( not sure what for but know it may be something to do with my bone marrow ( myeloma early onset possibly but not showing symptoms so far)

I am to have a face to face appointment with the Haemotology doctor in 6 months time instead of 12 months. It is good to know I am being monitored. I did have my 3 monthly B12 injection the day after the blood draw for the paraprotein sample. I asked the doctor if the bone marrow problem could be anything to do with my anaemia and the b12 not getting utilised properly. He said nothing to do with that. Then the week after this conversation a n envelope arrived in the post with no accompanying letter just a plastic bag obviously to take to the blood test dept at the hospital. The bag has a paper part advising the bloods to be tested for B12, ferritin and folate and assay for light chains. This is good to be checked for this possibility but I know the doctor said nothing to do with it.

What do I do? My B12 will be at a high level having just had my injection. Do you advise me to mention it to the Haemotology doctor or just have the blood draw. I’ve often wondered if my b12 doesn’t get through to the cellular level and how is this diagnosed.

Sorry it’s a bit confusing my post… just wondering if anyone else on this site had similar issues. I realise know one is medically trained to give advice but any input would be appreciated.

Thanks in anticipation.

[FlipperTD]

Scientist, not medic.

Your doctor's almost certainly right; 'nothing to do with it' is a very fair response. What you've received is a specimen request form, because nowadays, the tests are ordered on line so it speeds up the processing in the labs, and lowers the risk of the wrong test, or no test, being performed.

You're in good hands. Just remember to ask the doctor in clinic, and I'm sure they'll be able to explain. Good luck.

[PamBow in reply to FlipperTD]

Thanks FlipperTD. I m sure I’m in good hands … maybe I’m nervous having not seen the doctor at the hospital for two years due to Covid. It will be better at the face to face appointment in six months. Thanks again for replying so prompt. Happy Easter

[FlipperTD in reply to PamBow]

Cheers Pam.

The advantage with being under the Haematologist is that they won't overlook your other problems to concentrate on the early onset myeloma, because your PA [I'm assuming you have PA] will cause serious damage if someone didn't keep an eye on your B12 therapy.

Keep well, and Happy Easter to you too.

[PamBow in reply to FlipperTD]

👍

[newlandvale]

Like you I was found to have an issue with paraproteins and I self-inject. It may or may not develop into myeloma in the distant future. I insisted a biopsy was done as there is such a thing as non-secretary myeloma - does not show in blood but very rare.

Biopsy good, no sign of myeloma, but when I looked at the report on Patient Access it showed a problem with red blood - hypocellular marrow and reduced erythropoiesis. Biopsy was a week before 8-week injection due - I stopped injecting once I had an appointment for the biopsy

I argued my case by letters to the haematologist (copied in MP and GP). Eventually, in a sulk, the haematologist rang my GP. Don't know what was said but B12 now a generous (not) 6-weekly event. I continue to self-inject with doctors knowledge.

It is known that myeloma is more prevelent with B12 deficiency - scientific studies have confirmed injections are not the cause. GP won't increase my injection frequency from 6 weeks because B12 injections create a buzz therefore addictive. I suggested GP inject himself and confirm this is a myth. I also gave him info re genetic defects.

Continue injecting - it may keep myeloma at bay.

[PamBow in reply to newlandvale]

Sorry to bother you again….but were your paraprotein levels higher than 11, The consultant- doctor said they were still low ish…. I want to start asking questions and pushing things forward but not sure if I should wait if they are still at a low level. I see him in October.I do understand if you don’t want to divulge anymore.

Thanks again

[PamBow]

Oh my goodness…Thankyou so much for your input Newlandvale. I will have to read it all again to take it in. I’ve been wondering why just keep me on watch and wait all this time and not check bone marrow before things get worse. I can’t tell you what your reply means to me. Just to know this problem may be due to something else and not myeloma. I do highlight MAY as I do realise we’re all different.Thankyou again.

I’ve kept asking my doctor if I can have B12 inj more frequently because I get terrible nerve ending sensations which can be painful.. they tend to start after about 6-8 weeks after my last injection.

Take Care

[newlandvale]

Hi PamBow

My paraprotein levels were less than 5 and stayed there 3 months and 6 months later. I am due for the 12 month check now which will be repeated every 12 months if still low. I rang Myeloma Uk and spoke to a myeloma nurse for an explanation of my blood tests. I seem to remember her mentioning 100+ as a typical number for myeloma but do contact them to confirm what would be a concerning number or pattern of increase (if only to put your mind at rest).

Typical symptoms of myeloma are bone pain in addition to the usual fatigue and weight loss of cancer. The nerve pain you describe that comes and goes around B12 injections suggests that you need more B12.

Try not to worry about these test results too much. The NHS do take myeloma seriously (unlike pernicious anaemia) and you can google NICE Guideline CKS to check yor doctor is on the ball. I would also mention to the haematologist that the bloods were taken after your injection and that you experience nerve issues before your injection is due. If you get nerve issues you should be on 8-weekly B12 injections regardless of blood results - again wave NICE Guidelines at your GP and if that fails get the Pernicious Anaemia Society (PAS) to help with advice.

I am happy to discuss my experience but I have forgotten most of what I read up on because my blood results have remained stable. I bullied my GP and the Haematologist into doing a biopsy and even asked the haematologist too look for B12 issues! I wanted the biopsy for B12 problems!! He refused - said he would only look at what the doctor had requested! Thank god for Patient Access. Pity we can only see what gets posted on it.

Good luck with the B12 and the MGUS (monoclonal gammopathy of undetermined significance) which I think is the stage you are at.

[PamBow in reply to newlandvale]

Many thanks, I hope your next appointment goes well x