Hi just wondering if anyone else here as a diagnosis of MGUS, as been reading it can be common among people with underactive thyroid. Any information would be appreciated. Also have nerve damage but specialist doesn't think it's connected. Thanks in advance.
MGUS : Hi just wondering if anyone else here as a... - Thyroid UK
MGUS
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De8813
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helvellaAdministratorThyroid UK
I am afraid that I do not know what MGUS means. Yes, I did search, and found one possibility: Monoclonal gammopathy of undetermined significance Is that what you mean?
You did better than I did to find that! But, I got the impression that it's something to do with the myolen sheath, and neuropathy - which is sometimes a hypo symptom, De8813 , but can also be caused by low B12.
I have it but had no idea it was related. It's something the hematologist watches.
I have MGUS ....hypo and coeliac amongst other stuff.
Its a paraprotein found in the blood.
Has to be checked regularly to makes sure the proteins dont go higher
As its linked to Myloma.
I get checked at oncology.
Plenty of info on google myloma and mgus.
I have also been diagnosed with MGUS . No medic has ever mentioned it related to thyroid. Interesting
MGUS is an auto immune condition. I know a fair bit about MGUS as I have it, but not much about thyroid disease except that it can sometimes be caused by the immune system going haywire. MGUS can be related to endocrinopathy.
Important to remember that some classes of MGUS increase the risk of MM, whilst others increase the risk of Lymphoblast disorders like CLL and Waldenstroms
Hi misswoosie yes your right. I've been told MGUS is Igm so more likely to cause Waldenström’s or Lymphoma. Try not to think about to much but was told to check for any lumps in neck, armpits and groin cos of this. Hope you are well x
yes, that's correct. I have IgM MGCS (new category- Monoclonal Gammopathy of clinical significance) as I'm one of the 1:100,000 people who has an associated antibody called Anti MAG which causes demyelinating progressive peripheral neuropathy similar to MS but it usually only involves the peripheral nerves whereas MS involves the cranial nerves of the Central nervous system.
all types of MGUS can cause peripheral neuropathy, IgM MGUS is the least common of the 3 types and can sometimes have an antibody called Anti MAG which , as you say, affects the myelin sheath a bit like MS and causes neuropathy.
There is a syndrome called POEMS which stands for peripheral neuropathy (P), organomegaly (O) endocrinopathy (E)a monoclonal plasma cell disorder -MGUS (M), and skin changes (S), This is most likely to be associated with IgG or IgA paraproteins/MGUS.
Haven't heard of this new category MGCS. Thanks will look into it . Hope you're OK. How is your neuropathy? Hope you're getting treatment for it. I have it in my feet, can be so annoying especially at night. It's more like stinging now rather than tingling and starting to feel it in my legs and arms very faint. Have you been diagnosed for a while? X
Hi, I first started feeling unwell about 4 years ago.
Very tired, brain fog, balance issues, sores and scabs on scalp , various skin/gum infections., aching joints. Back and forth to GP and they kept telling me it was anxiety.
One weekend I had pain and swelling in the back of my calf and was concerned about a DVT so attended A/E. I didn;t have a DVT, but my blood clotting results were abnormal and stayed that way through 4 checks by GP over 4 months so they referred me to Haem who found I had MGUS.
IgM kappa. So small they couldn't quantify it. DIscharged and GP to follow up, but they were clueless and I was still feeling unwell and off balance in particular, so I asked to be re referred.
The paraprotein was measurable at 2.2, but still small. I mentioned that I was off balance and that sometimes I felt like I had something stuck to the bottom of my right foot and my toes felt numb.
He tested me for an antibody called MAG- Myelin Associated Glycoprotein- antibody and my result was 8,000 . Normal is below 1000.
I have Anti MAG neuropathy which causes loss of myelin which acts as the insulation on peripheral nerves, so the impulses aren't sent back and forth from the spine to the peripheries.
It usually starts in the feet and moves upwards over time. As well as loss of sensation and burning, it can have motor symptoms and cause cramps , tremor and muscle weakness.
Over the last 2 years the neuropathy has got worse. Toes on both feet have less sensation and they burn constantly, especially at night. If I'm on my feet for more than about an hour my toes, particularly on my right go into a half cramp like spasm.
I also get weird sensations like someone has poured cold water on my thigh.
It's supposed to be a symmetrical condition, but my right is definitely worse then my left.
I've seen a neurologist and my nerve conduction studies showed demyelination of the nerves in my feet and carpal tunnel, which preceded my feet symptoms by about 3 years, so not sure if it's related to the MAG as usually it doesn't affect the hands until much later, if ever.
Because it's so rare with only 1;100000 people having it they don;t know that much about it, especially not how to treat it . They can use various drugs like anti depressants and epilepsy drugs to help to relieve symptoms, but when I tried pre gabalin I couldn;t keep my eyes open, and the more tiredness is the last thing I need!
I don;t have much faith in my haematologist as he's a pure blood numbers old school bloke. The guidelines for IgM MGUS say to check Immunoglobulins and paraprotein, FBC and U and E's every 6 months, but when I go and see him in Jan it'll be 18 months since I had any bloods.
I think I now have Sjogrens as I have a dry mouth and very dry, sticky and red eyes. Started about a year ago and now the ointment isn't really helping.They checked for that 3 or 34 years ago and I was negative. I've also developed perhaps eczema on the palm of my right hand over the last 2 weeks so off to GP next week. Waiting for dermatology appointment for my sore scabby scalp which I've had for nearly 5 years now and no GP seems to know what it is. Try this, try that..... The wait for a routine dermatology appointment is a year!
My eyes don;t seem to work correctly either! That sounds strange I know, but when I go to the opticians (I wear varifocals) I struggle with the eye test questions "which is better, this .... or this? because I feel like I have problems getting things into focus with my right eye. Other times I feel like I have tunnel vision.
My gums are poor I guess because my immune system is compromised.
My IgM level is above the normal limit because of the paraprotein, but my IgG and IgA are both low. I think the bone marrow makes less of them because of the paraprotein, but there's a lot I don't fully understand.
Thankfully my blood counts and liver and kidney function are fine. I'm just to say not anaemic, although that was over a year ago now!
I take turmeric tablets and I 'm sure that helps the neuropathy. Also walking helps my balance even though on a bad day it feels like an almighty effort to walk in a straight line.
Sorry for the very long post!
From a research article .bloodjournal.org/content/12...
"We studied 138 MGUS-patients that were diagnosed in our center and then followed up to a median of 36 months (6 months - 22 years). Median age was 66 years (27-92 years). 57% were of female sex.......Finally 18.1% of the patients presented non-malignant thyroid disease, mainly hypothyroidism (10.9%) which is increased compared to the general population"
I believe there might also be a higher incidence of thyroid disease in people who have Multiple Myeloma, which is one of the malignant conditions MGUS can progress to.
MGUS are often found alongside autoimmune disorders such as coeliac, RA , SLE etc etc etc! Very common , especially in over 50's.
The risk of progression to a malignant disorder is fairly low at 1-2% per year.
I know what you mean misswoosie about loosing faith in doctors, make you feel like ur a hypochondriac. I thought you might be getting some kind of treatment with having the MAG diagnosed. I'm like you neuropathy started in right foot 18 months ago 'diagnosed' but must of had it much longer as kept thinking it was the shoes that were uncomfortable, socks too tight. Neurologist discovered paraprotein of Igm kappa at 3.8 Was discharged as couldn't find the cause of neuropathy. Got letter months later about a blood test they had done saying I should be referred to haematologist. My doctor said 'you look healthy to me' didn't want do referal, until I had another blood test 🙄 so I feel your frustration. Can't understand why you don't get monited every 6 month. Think I've read as much as I can possibly find about MGUS and we apparently have the worst one. This might sound daft but it's nice to chat with you as you seem to have the same problems as me. I've been having balance problems, feeling dizzy and eyes a bit more blurred lately and had a rash on my chest for a few weeks now, will wait a bit longer to see if it goes. But no point going to Dr about it. Did take turmeric tablets for a while so might go back to them if you think they help. Nice talking to you x
Oh I did get tested for anti mag but was negative so haematologist doesn't want to say my neuropathy is connected to my MGUS, said cause paraprotein is so small shouldn't be that x
Hi stranger! I had to come and read your posts to get an idea what we knew about one another! Sorry I missed this last post a year ago.
That's incorrect to say that, as there are other things that cause neuropathy which can also cause MGUS!
How are you doing then? Have you had any other tests?
I'm waiting to be referred to a Prof who specialises in POTS (postural orthostatic tachycardia) Since I got a copy letter from last Neuro review which stated I have small fibre neuropathy, I've realised that I almost definitely have POTS, and that was what was making me feel so lousy 5 years ago. I spoke to someone who's a bit of a Anti MAG neuropathy guru (by email) and he seems to think it might be something other than the Anti MAG antibodies causing the neuropathy because a blood level of 7000 isn't that high.
If you can believe it, my scalp folliculitis is still as bad as ever! Coming up 6 years now.I've had antibiotic tablets (lower dose used as an anti-inflammatory) for a total of a year, and a 6 mnth course of Roaccutane which was hideous. The Derm just treats it as they would treat any other and tells me they don't know why people get it. I'm sure it's related to my immune system.
I don't really think any immune system problems occur in isolation.I'm sure once you have one you have another issue, but it's a matter of persuading the Drs to listen and look for it.
Sjogrens frequently goes hand and hand with POTS, and they now believe that ME and CFS are autoimmune disorders with a degree of autonomic neuropathy.
Hi misswoosie sorry to hear about the POTS but good that your getting referred and hope they can give you some treatment for that. I've been fine really thanks apart from the burning feet and now heart flutters, but getting that check out. Dr did reduce my levothyroxine dose and I thought that would stop the fluttering but it seems worse. Mgus has been stable so glad about that. You didn't mention the mgus so suppose your the same thank goodness. Don't know about you but it's always at the back of my mind, any aches and pain and think it might be that, but most likely menopause at the moment 😂 got that to look forward to. I was thinking this ichy rash I have might be similar to your scalp and is definitely my immune system working over time but Dr doesn't seem interested. Good luck with the specialist and hope they can improve your health.
Having trouble replying. Message keeps deleting. Will try tomorrow 😁
did you get the message I sent you yesterday? (At least I'm sure I sent it!).I can't see it now. Maybe I didn't (brain fog=autonomic dysfunction!) My MGUS is stable. Well at least it was 18 months ago! Supposed to be seeing Haem in Jan for yearly review, but it was cancelled months ago (our local hospital took the path of cancel ALL OP appointments and then remake them as and when) and still waiting for new one. Menopause is 4 years in the past for me (this all started around the same time-hence Drs trying to pin things on that or anxiety or both. Re rash- I get contact resctions. Most of the time I couldn't tell you what it is that caused them unless I've been gardening. I get a very red, intensely itchy raised wheal and often the skin will break. I've never had anything like this before. Never been allergic to anything .
Sounds very similar to me. Rash worse after I've had my shower. I look like I'm on fire with red spots spreading and so ichy but then calms down the next morning, and have cuts were I must of nocked the raised head. I've still been getting bloods every 6 months,was supposed to go the hospital in June but obviously cancelled xx
that's true . IgM MM is very very rare.
