Help confused

This topic contains 6 replies, has 3 voices, and was last updated by  mulberry 1 year, 6 months ago.

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  • #147900

    windylou
    Participant

    Should I be worried?
    I had a blood test in December to check my thyroid levels
    When I spoke to GP she just mentioned “oh you have some paraprotein, you’ll need to be referred to haematology”
    I’ve had to look up what this could mean and obviously I’ve found out it could be a sign of Myeloma
    Test result says:
    Serum protein electrophoresis newly identified monoclonal 1gG lambda protein at low concentration (4g/L)

    Can’t really work out if I should be worried or not

    Any help appreciated

    Thanks
    Lou

    #147901

    mulberry
    Participant

    Hello Lou

    You’ve come to the right place.
    It is not “normal” to find any level of paraprotein in blood tests, BUT 4g per litre is a low level, a very low level compared to the levels people normally have when diagnosed with myeloma.
    There is a pre cancerous condition called Monoclonal Gammopathy of Unknown Significance (MGUS) which is fairly common in the community, but most people with it don’t know they have it, as it doesn’t have symptoms- or necessarily cause problems. Some people just live with it forever. But in some cases it eventually develops into myeloma or chronic lymphocytic leukaemia (and all myeloma patients will have gone through this phase, but most were unaware). So people with low levels of paraprotein are monitored with blood tests to check that the level doesn’t get over 30g/l , or that they don’t develop any damage caused by the monoclonal cells, either high calcium levels (which can cause strokes), kidney damage, anaemia or bone lesions.
    Some of us have physical damage at levels under 30g/l, but not at levels as low as 4g/l.

    My myeloma came to light when I was diagnosed with thryoid issues too, but in my case had paraproteins of 32g/l.

    Jane

    #147902

    windylou
    Participant

    Hi Jane

    Thank you so much for replying

    I have been hypothyroid for about 10 years and under control and used to knowing if my levels feel a bit off ect

    I am reassured that my paraprotein is only 4g/l it was just confusing when the GP casually said referral to Haematology, I have read about (MGUS) and am anticipating that is what’s going on with me 🤞🏻 But like a lot of you on here you can’t help but worry and wonder until you are more informed
    For about a year and a half I have been experiencing vibration’s in my lowered legs and numbness pins and needles in my hands, I was referred to a neurologist and have had numerous tests including MRI to rule out MND MS ect the only thing they have come up with is that I have some degenerative disc osteoarthritis and referral for physio
    Oh this getting old malarkey not fun

    I’ll post again if and when I have my answer

    Lou

    #147905

    mariposa
    Participant

    I have had under active thyroid and high blood pressure for over 40yrs. Last year I had a dizzy spell when I was admitted for 2nights to see if I had had a stroke.( I didn’t thank goodness).
    One of the tests showed paraprotein levels at 9. Following an initial consultation and bone marrow biopsy, I was diagnosed with Mgus. I’ve had 2 follow up appointments where my level has stayed at 9.
    Iam soon to have a scan to see if the tremor in my right hand is due to Parkinson’s. That is a bigger worry at the moment.
    As you say, this getting old lark is no fun.(I was 70 in January)
    Try not to worry, you are in good hands and people on this forum will help you if they can. Take care x

    #147906

    windylou
    Participant

    Thank you for your reply

    Your story seems similar to mine, hypothyroid for about 10 years
    I have felt dizzy and out of salt’s for a long time, maybe 4-5 years then this vibration started in my lower legs and feet a year and a half ago which started my neurologist journey, but nothing has been found
    This blood test that has found the paraprotein was in December and I am going to my first haematology appointment on Friday
    I am expecting it to be MGUS and hoping that they will confirm that the vibration that I experience every day is related to the MGUS, then I will at least have a answer to that
    By the sound of it MGUS just lingers there and we just watch and wait and hopefully it doesn’t progress

    Thank you again
    Take care

    #147954

    windylou
    Participant

    Well, I had my first appointment with the haematologist on Friday
    He insisted that I shouldn’t be worried
    But then gave me about 6 pages of blood forms that he promptly stamped with urgent
    I also had full body X-rays and urine test
    Just have to wait for the results!

    I had a bad day yesterday really disorientated spaced out and dizzy all these vague symptoms that I have had for a long time now
    Just would like to feel normal again

    #147961

    mulberry
    Participant

    Hi Windyloo
    All the tests are quite alarming, but in the long term it is good to have had them. Hopefully these tests will confirm that you don’t need treatment at the moment, but will give baseline results should you be unfortunate enough to need treatment at some stage. It is far better to have what seems to be too many tests, than to be one of the patients where delays were caused by things not being picked up. But at the time, it is anxiety inducing, and it’s only in hindsight I can say this!
    Jane

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