Hello everyone
Hoping you are all as well as can be expected.
I had my appointment at the Brompton and they have diagnosed small airways problems and did a ton of blood tests. Everything is in the average range apart from a strange anomaly of low IgM which is apparently rare and can indicate immune problems. Has anyone else out there had just this one marker?
Thanks in advance!
Not sure if this is of any help. I have low immune globulin levels caused by having Rituximab infusions. I currently have ig replacement but have been told that the iga and igm can’t be replaced. The different types of ig protect against different kinds of infections.
Thank you so much for replying. Yes all the different Ig have separate roles. I’m going to see an immunologist and I gather there is some new research on infusions for igM.
I’m sorry about your situation. I think mine is a rare genetic disorder because it’s in isolation. That’s why no one else around here has replied I think.
I hope your situation improves.
I thought you must be unique not to have received any replies in this knowledgeable and helpful forum. That’s really interesting that there’s new research on igM I will ask my immunologist when I see him. I hope your immunologist is as lovely and helpful as mine is. Good luck x
Hey hellodolly.
Had the doctor told you the reason to izolated low igm? I have it too... and my doctor can’t tell what it means...
it’s really frustrating..
I am waiting for a specialist immunologist appointment. It may be a very rare genetic disorder. It is unusual so most doctors do not understand it. Let me know if you get any answers.
Okay.
I don’t think I will be further investigated as the doctor thinks it is a "single finding", even though it has been demonstrated x 2 with many years between. I do not feel the doctor knows what it is....
I hope you will let me know when you Got af answer.
Where are you based? You can ask to see an immunologist.
Denmark.
My doctor had called af immunologist to help, at he Think it was A single finding.. and ask what we need the bloodsample for, and rejected further medical examination
Do you have any symptoms?
Well in the NHS you have a right to see an immunologist to at least discuss it.
Hi. Sorry for the late post. I also have isolated IgM deficiency and I'd be interested to hear if you got any further with this. Thank you.
Hello-
I saw the immunologist at the Brompton about 2 months ago. He asked me endless questions about my health/ parents’ health etc, then ordered about 50 blood tests. I’m going back on the 31st and can tell you more then. What is happening with yours?
Hi. Thanks for getting back to me. I'm being investigated for auto-immune disorders and see my rheumy again next month for review. I've had some unusual infections - mycoplasma pneumonia, campylobacter, glandular fever without antibodies etc - but nobody has specifically remarked about my chronically low IgM. I'm going to mention it to my rheumy. Please let me know what the immunologist has to say. Thanks again - it's confusing!
Hi there
Do feel free to pm me. From what I can see in the literature, lowered m in isolation can be a rare genetic disorder which leads to a lack of immunity but may have a role in autoimmunity. It is mentioned on the genetic and rare diseases site. It leads to lots of chest infections in particular as it is a first line of defence. I’m not sure if it can be caused by viruses like chronic epstein b etc.
Hi again. I have lots of symptoms that seem to be linked to auto-immunity. Don't want to bore you, but take a peek at my posts on Lupus HU if interested. I think I've had them all my life, but they've certainly evolved and changed as I get older. Interestingly, I see a lovely thoracic consultant twice yearly as I have 'Velcro-like' crackles at the base of both lungs. He doesn't know the cause but CT scans say it's not ILD - yet anyway. Please update me about the immunology appt. xxx
Hi. How are you? I'd be really interested to hear how you got on at your appt with the immunologist. Any info would be helpful! thank you. xxx
Hello
Well the tests continue. The Prof now wants me to have a pneumonia vaccine so that he can track whether or not my immune system makes antibodies. The big problem with lowered m in isolation is that there is lowered resistance to many infections , especially lung ones. Could you get a referral to Professor Kelleher at the Brompton? He is clearly a world expert on this issue. I hope you are doing ok x
Hi. Sorry for my late reply, I seem to have missed your post. I'm seeing my rheumy on Wednesday, so I'll see what she has to say before I pursue the IgM issue. I do get strange infections, but certainly not every month, so perhaps this is a red herring for me. What do you think? Anyway, how are you? xxx
Hi HelloDolly, I've been searching for help about my low IGM level, and have read this post and replies with interest. I haven't been diagnosed with any lung related issues, despite having yearly chest infections and a stay in hospital for pneumonia. Blood tests revealed that my IGM level was out of the bottom of the range. I'm not sure if this linked with my hypothyroidism, or just another isolated issue.
My big concern now is - is it safe to have the flu jab if my immune system is not 100% - or will it make me ill? Have you been advised about having the flu vaccination?
Many thanks, keep well.
Hello -
I now see the immunologist at the Brompton, and you could ask for a referral. You may have the rare genetic disorder ‘lowered igM in isolation.’. This means that you have particular susceptibility to chest infections as your immunity in that direction is so low. You need to let any doctor treating you know that you have this, as you may need more antibiotics and sooner, than other people.
The flu jab is apparently safe for us to have as it is not hitting the chest directly, which is where our main vulnerability lies. That is according to Professor Kelleher.
Please do stay in touch and message if you’d like as we are a rare group.
Good luck!
PS - The thyroid question is interesting, as is coeliac, which I also may have. I’ll ask Prof Kelleher when I next see him in December. The genetics of this is complicated and not well understood.
12 week isolation letter 
SELF ISOLATION and KIND VOLUNTEERS......
Daughters in the dark
Full lung function test results
THRUSH IN THE THROAT
