Could someone explain to me what the difference is between my iga result and my m spike. I find it all really hard to understand. I have mgus.
Gp recently found my ferritin level (Something to do with iron storage) was 408 and wants to speak to my haematologist? Are there related
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Hi @Jenwren_78. Sorry I can’t help on this one. Definitely one for your medical team or somebody with more experience than me. I’m like you and find anything to do with blood levels very confusing. However, when anything changes it causes me lots of anxiety so I hope you are ok? Is your GP going to contact them? The support line may be able to help 0808 2080 888 Keep us updated x
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Hi @Jenwren_78, hope you’re feeling okay - it’s totally understandable you find this all hard to understand! In case it’s helpful at all, we have this information sheet on MGUS - https://media.bloodcancer.org.uk/documents/MGUS_-_monoclonal_gammopathy_of_undetermined_significance.pdf
Myeloma UK also have an infosheet on MGUS which you can find here if you feel it might be helpful to read through - https://www.myeloma.org.uk/wp-content/uploads/2018/03/Myeloma-UK-MGUS-Infosheet.pdf
As you will know though, the above is all general information. The best people to speak to about your questions would be a member of your healthcare team, such as your GP or your haematologist as they are equipped with the information around your individual circumstances. You’re well within your rights to feel informed so don’t be afraid to get back in touch with them to ask any questions you have or ask them to explain things to you further.
If there’s anything we can do to support you please do give our support line a call.
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Hi @Jenwren_78, yes, too technical for me too and @Nichola75 and @Alice_BloodCancerUK have given you brilliant advice.
How are you doing apart from your obvious, very natural, confusion and concern?
I’m not sure if anyone is seeing. Messages how do you start a new conversation I need some help to do this
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Hello @Wilma, welcome to the forum! To start a new conversation, go to the forum home page and click on ‘New Topic’ on the right hand side of the page.
Alternatively, feel free to write your message here and I will start a new topic for you.
Alice
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Hi Wilma, a welcome to our community forum. I really really glad you have joined us and I hope you will find the forum informative and supportive.
You can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk if you need to talk, but as you can see we are here to support each other.
How are you doing?
Hi Wilma and welcome! Did you manage to work out how to do it?
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Thank you for your comments ive read the info sheets but still am unclear what the diff is between iga level and if this is totally seperate to my m spike. My gp referred the bloods to haematology and they’ve booked me in for a review next week so I’ll ask then
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Hi @Jenwren_78, please let us know what haematology say next week and make sure you get understandable answers to all your questions. Take care.
Please keep us updated x
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Hi When I had the high ferritin my go said she’s eas going to consult the haematologist and would be in touch. I then received a haematology apt in the post. When I attended the haematologist could understand why I’d been sent to her and said high ferritin isn’t related to mgus and made me feel a bit silly for being there. I’d been suffering with a lot of pain in joints and all over fatigue etc so she referred me to a rheumatologist who diagnosed me with fibromyalgia. He didn’t specially tell s anything about the ferritin and I’m not actually sure if it’s been checked again to be honest. I still just feel the way I’ve been feeling, like a 43 year old in an 80 year old body. I have meant to ask gp about the ferritin levels but work covid etc don’t really like to bother them unless it’s urgent
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Good morning @Jenwren_78.
One thing I have learnt over the last few years is that nothing is to small to bother the GP about. I know they are busy but if you don’t ask is it something that is just going to play on your mind? If so give them a call. I think it’s worth it for peace of mind.
How are you feeling at the moment. Are you being supported in managing the diagnosis?
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Hi @Jenwren_78, you certainly have had some health challenges.
Peace of mind is so, so important and I have learnt to be pleasantly assertive if I have a question to ask and also to ask that follow up question. No question is too trivial.
Please let us know if you do pursue it, look after yourself.
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Hi @Jenwren_78 you should certainly investigate anything that worries you. I frequently bother my GP as I wasn’t taken seriously at the time I was diagnosed. Hope it turns put well for you.
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Hi Jenwren_78 how are you doing. Hope you’re feeling better than in your last post. Did you get any information from your doctor about your high ferritin? Think you should be offered a gene test to check for haemochromatosis as this can be a cause of high ferritin. My son and I have recently been diagnosed with this and I also have MGUS igm type. Hope this helps. I’ve also been suffering with joint pains and fatigue . MGUS specialist doesn’t think this is related to this condition as well as my neuropathy so maybe it’s the haemochromatosis. Still waiting for my appointment to see about this. Please let me know you get on.
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And @Dottydogwalker please let us know how you get on, it’s horrible awaiting appointments isn’t it.
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Hi Jenwren and dottywalker, I have igM mgus and my ferritin levels were initially very high but have now come down to high end of normal. The Rheumatologist who ordered the test initially , said it was a broad indicator of inflammation, and that my high serum levels could be related to a benign kidney tumour I also have. I wonder about haemochromatosis . I have many joint pains and arthritis… there is something on my DNA test results on 23andme…I have some variants …but on a balance no overall increased risk. My GP has been happy to retest ferritin.
Best wishes
Helen
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