I have recently had my haematology appointment and because my bloods are stable and the paraproteins are low I have been put in annual follow ups.
I now I should be happy about this but I am a bit low after having shingles followed by a uti and have a niggling worry about my persistent low lymphocyte count. They have been low for years. GP’s told me it is my “norm”-but it seems wrong to assume that something outside the normal limits is “normal” for an individual without checking. I have also been told that we only look at those test results in emergency medicine. Also, it isnt rekevant to monoclonal gammopathy of unknown significance (MGUS) so we dont bother.
I had my review with a nurse who was new to her role and whilst not super knowledgeable was willing to go away and ask questions. She phoned back the next day and said the doctor says that low lymphocytes are usually caused by low vitamin b12 and folate and has sent me blood forms for those tests but my GP has also ordered those same tests. I did the GP test but am worried that the uti or lingering shingles or antibiotic might impact the results. Should see the results after Xmas.
Logic tells me that a low lymphocyte count should keep my paraprotein levels low so would it be in my interest to boost my vitamin levels if they turn out to be low.
Am I building mountains out of molehills? Should I forget or seek answers?
Oh @helenfwallace perhaps don’t think about mountains, molehills and logic.
I believe that if is playing on my mind then I need to ask the question and get an answer.
I was also struck by you saying that you ‘should feel happy’ I know that my thoughts and feelings have never been logical since I was diagnosed!!
I can easily feel abandoned, a fraud.
Personally I think that we are complex beings and everything can interact with other things.
I also find that different medical people tell me different things sometimes.
Please do let us know how you get on and really look after yourself.
Hello @helenfwallace,
I appreciate you saying that you feel you ‘should be happy’, but as @Erica has said, when you have been poorly, logical thoughts may not be there! Whatever and however you feel is okay and it’s real for you.
You will always have an monoclonal gammopathy of unknown significance (MGUS) diagnosis and so you may get times when your thoughts and feelings around the diagnosis are more overwhelming or troubling.
Everyone experiences this different ways and at different times. There certainly is no ‘normal’ way to think or feel.
It’s good to know that your nurse is approachable and will advocate for you. Do let her know how you are feeling and particularly if your infections don’t go. It sounds like she will do her best to help you.
It’s good to know that you’ve had some other bloods taken already. Vitamin B12 and Folate are usually ‘long-term’ tests. The results aren’t affected quickly by things like antibiotics, infections or medications. These counts usually change over a long period of time. If you are low in either of these you will be prescribed supplements, and need your bloods rechecking in a few months time to see if the supplements are improving your counts.
Hopefully your GP will be monitoring your Folate and B12 levels and advising you, as well as keeping you informed about your other blood counts to reassure you.
Don’t forget our support line is here for you, should you need to call us.
Let us know how you’re getting on.
Best wishes, Heidi.
Hi Helen, Hi everyone
I understand completely feeling those nagging questions that should be able to create a more complete picture for you. It’s very good you’ve done the other tests. The questions regarding lymphocytes… I would probably have asked myself the same. I do hope you’re able to get the answers for your peace of mind. monoclonal gammopathy of unknown significance (MGUS) is complex, as is everything regarding our blood, immune systems etc.
I’m in the middle of a question and waiting answers phase too. Since the summer the purpura on my arms appear on and off, a rash on my face will not go away. At first the dr. thought eczema. I’ve followed all suggestions. Then rosacea… I’m day 7 with the antibiotic and creams and there’s very little change. It’s so embarrassing.
I did get the panel of other blood tests more geared for dermatologic autoimmune. The only thing positive is the ANA. The urinalysis has 2 things a bit off. I don’t know what any of it means collectively. Searching online does no good unless I feel like horribilizing for a bit, which I don’t. So am trying to not think until I can get in to dr. Due to holidays… I can see my hematologist on the 8th, but the home doctor and dermatologist not until later in the month. That’s okay. I really like the hematologist. I keep hoping to be put on an annual blood check instead of every 3 or 4 months.
By the time I have hopefully some answers, hopefully you will too. We can have a coffee time celebration for questions that have been answered session!
Elizabeth
It sounds as if you have both got it sussed asking your questions @elipt66 and @helenfwallace, perhaps be pleasantly assertive and ensure you get the answers you need.
I look forward to both your updates.
look after yourselves
I have had the blood test results. Vitamin B12 is Ok (mid-range). Vitamin B9 (folate) was just within the normal range but at the lower end but still signed off by the reviewing GP as “normal no further action”. The Full Blood Count was reviewed as “borderline -long term low lymphocytes -no acute concerns”. Not sure what that means, but the lymphocytes were at 0.7. There was surprise blood film result of “no significant abnormalities”. Surprise because there isn’t a record of it been requested on my medical record. Not sure where this leaves me other than I don’t have neither an absorption problem nor dietary shortage of Vitamin B12 and I am making normal looking blood cells. I see the GP on Monday 15th to discuss.
I am getting red blotches/red lines which I was diagnosed as urticaria by a dermatologist. I hope you get you find a cure or treatment for your rosea. Having a rash on your face can make one very self conscious. I too have ANA’s, but the ENA panel has come back clear. I am under Rheumatology care, but I am not expecting any firm diagnosis to emerge anytime soon.
Hi @helenfwallace it’s 'interesting when many of us are receiving acre from different medical specialisms isn’t it, we are complex beings.
Please do take lots of care and let us know how you get on on Mon 15th and the answers to your questions xx
