Hello - this is my first post here - I am usually on the Hughes Syndrome section of Health Unlocked.
I was diagnosed with Hughes in April this year after 20 years of ill health. I had two booster shots of B12 12 years ago and that was all - just a precaution I was told.
Now further on-going tests for the Hughes shows I may also have Lupus and that I am B12 deficient but folate levels are normal. I didn't think folate could be ok but B12 not ???? Does anyone else have same? What is the difference between folate and B12?
I am about to have 5 shots of B12 over the next two weeks and then one every 2 or 3 months lifelong. I am also going to be tested re PA as I have a diet rich in B12 but they reckon I just don't absorb it.
Looking at the PA symptoms I was staggered to find I have most of them I am particularly upset by the neurological problems as I have read they will probably remain despite treatment as I have had them for so long - confusion, memory loss, slurred speech, numbness and tingling.
Trying to remain cheerful but I have 14 doctor/hospital appointments during October and it all feels so odd - at least I am being looked after I guess - pity it took 20 years and two lost babies......
Thank you for reading this far.
Lynn.x.
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I don't know anything about Hughes syndrome but it seems that you may have a clear diagnosis of a condition related to b12 metabolism. Here is an extract from the document Found at this link. It is rather too scientific for easy understanding but suggest that doctors should be carrying out homocysteine and MMA tests, and that you should not take any extra folate until the doctors have reviewed your case. Please be aware that what I have written is the result of some research I have done on your behalf. I am not qualified in any way to give your advice.
"In conclusion, we have extended the findings of our recently published study of the interaction between vitamin B12 status and folate status in relation to anemia, macrocytosis, and cognitive impairment (11) by demonstrating that, among people with low serum vitamin B12 concentrations, high plasma folate is associated with
higher concentrations of the two functional indicators of impaired B12 status, Hcy and MMA. These obser- vations provide a possible biochemical explanation for high folic acid intake’s exacerbation of the clinical manifestations of vitamin B12 deficiency."
High folate can actually be a sign of a B12 deficiency, because the 2 work together, if you haven't got enough B12 the folate will sit around in your blood doing nothing.
You need to go to this link and have a read all around it, and watch the documentaries etc.
There is a link to a Facebook page where you will get a lot of advice from sufferers, and also the Pernicious Anaemia Society website, which also has an active forum.
It is possible to back out of a lot of the symptoms as long as you are getting enough B12. I'm afraid to say that a jab every 2 or 3 months is usually not enough. Please be aware that the BNF guidelines actually allow for injections every other day until no further improvement in the case of neurological symptoms. You can see this information here:
You need to get knowledgeable and demand the right treatment, and kick your docs behind for giving you a couple of jabs many years ago and then no follow up. This happened to me as well and it's just got to stop.
Once on B12 treatment you need to maintain folate in the top end of the range, and you need to have good iron levels, a ferritin of around 80 would be good. It is also wise to take a B-complex to stop the other Bs getting out of balance, and get your vit D tested whilst you're in demanding mood (!) as that is often low too. Consider diet, gluten is often an underlying issue.
You speak such a lot of sense- you seem to be confirming some of my own doubts and concerns - I read up on vit D a few weeks back and wondered if this could also be low.
I am on warfarin so green veg has to be monitored carefully so I need to consider other forms of folates.
On the Hughes site folk have said about gluten free so I tried - wow what a difference - I felt so much better so I am going to discuss this with my doctor too.
I have been amazed at how all the auto immune stuff I seem to have are all somehow linked and overlap with each other. No wonder I have felt so awful.
Thank you for relying.
Lynn.x.
Lynn, I said exactly the same. Have a look around health unlocked..
I went to the thyroid, diabetes, RLS site and saw that Inflammation is
the key..the symptoms overlap as you said and so do the treatments.
One wise man said that inflammation fighters are like firemen putting out
fires..they all rush to the scene and get out their hoses and start putting out
the flames.. that's the water that puts out that fire..and when you put junk
food in the body,,it's like pouring gasoline on the fire..it's feeding inflammation..
so you have this constant war between the gasoline and water.. everything
is getting damaged... it sounds like cleaning up your diet is really helping.
It makes sense..=)
I would agree to talk to the doctor..the doctor is usually quite happy if you
fall into the range that they learned was "Normal" I felt quite ill with symptoms
of B12 deficiency..I did tell my doctor that I was doing my own B12 and I
followed up with folates...kept myself in balance..and that along with my
monthly injections pulled my numbers right to the top..the 20th percentile.
My numbness still lingers but has improved greatly..the burning of my feet
is healing as well..the tingling is almost non existent..
I ordered my own b12 shots..I didn't remember to eat a lot of bananas, oranges,
white potatoes and my heart started palpitating..I had some muscle weakness
and I was a little bit breathy while out running.. Hampster told me it was because
of the low potassium...I ate a pound of potatoes and bananas yesterday after
reading what she sent to me and the palpitations are gone..so is my leg weakness.
My point is to make sure that you ask the doctor what other vitamins and minerals
you need to add before you have something go out of whack..(thanks hampster)
The palpitations scared me so much that i stopped with vitamin B12 until
I get my levels checked again in a few weeks..I will just do my multi vitamin and
minerals, plus the prescribed B12 once a month shot..
Good Luck and keep us posted on what you need to do since you are on warfarin.
That type of blood thinner changes everything I ever knew about taking supplements
and what you can and can't eat. I was on it after knee replacement for months..
Without hamster..we would all get in trouble with potassium. =)
It's hard to remember all. =))
• in reply to
Yikes!!! I forgot to mention the potassium as well Another culprit is low magnesium, so many things to try and balance...
One form of magnesium works as a laxative and the other one is what
you want to get but the name escapes me at the moment..
It is indeed a system that we need to learn and have tested every so often..
the blood test is not hard but talking the doctor into running the tests is..
• in reply to
The one I take is magnesium citrate, definitely doesn't have a laxative effect on me! And I had my levels tested so knew I was low (privately of course, not something the average GP is interested in). I only get my potassium from food, no supplements. Too much can be dangerous.
Having reread your original question Lynn I think the main thing is to try and get injections every other day until no further improvement, and ask to be taught self injecting so you can do it yourself, then they can't throw a cost argument at you (the B12 vials only cost 68p each). For fantastic support you can join the PAS (you can read the forum for free but have to be a member to post), or join the Facebook group, links to both of these are in the original website link I posted above.
H x
• in reply to
You are right that doctors turn their noses up. Vitamins are
not big money makers for pharmacy either..Who trains
these doctors?? Vitamin and mineral checks came after
I had a mri, ct scan, x-rays, saw 2 specialists and 3 yrs
later, It turned out to be a B12 and D deficiency.. My tingling
and numbness days are coming to an end..some of the
damage will never repair but a lot has improved greatly.
I still get the pain, burning feet and sometimes my feet
feel frigid but when I touch them with my hand, they are
warm to the touch...that signified that it's still early damage..
Give this a try Lynn, even though you think that it can't be
something as little as a vitamin problem..Good luck
and keep us all posted..I am interested in particular since
you too have an autoimmune disease like I do.
By the way: Hampster is right on..she is a smart cookie! =))
She should be a high paid teacher to the doctors..
Lynn, let others care for you. People probably always say that if they can
do anything to help you...put them to work. They wouldn't ask unless they
meant it. I had a rotation of people to take me to many appointments with
a year long surgery schedule..(my knee-same knee replaced 5 times-infection)
My husband had to work so he couldn't always help me out. I did allow
for family members to come and help me around the house..they really were
more than happy to be useful. Lupus is no "little disease" to contend with.
I have RA, PA, RLS..my RA medicine can make diabetes a problem so I have
to be right on top of things, I check my sugars..I also get steroid injections
every so often (kenalog shots, pills of prednisone) It's not very often that I
have to get those but when I do, it's a world of difference.. Do you get those
with your Lupus? Lupus is working hard at your body so I would imagine that
you feel runned down and yucky...I'm so sorry that it's not going great right
now but if it is B12 deficiency or Vitamin D deficiency, you will be feeling so
much better after a few injections and pills. Honest, cross my heart. Those
levels need to be close to the high end of normal for you. Try to keep looking
forward. I can tell you that better drug treatments are coming down the
pipeline for Lupus and those other autoimmune diseases.. get this testing
and treatments started and you will already be ahead of the game. Just
keep telling yourself that the shots are like gas is to your car...you are
getting a good tune up while you have lots of appointments and this will
get you feeling more energetic, will improve that yucky feeling and will
bring back more of who you want to be. <3 I am sending you warm wishes
for a fast October..and though you went through so much, including that
loss of two children, you will get stronger, more healthy..Take care of you.
Thanks Karen - you and everyone here have been so helpful and kind.
I am still awaiting the lupus blood tests but have been told that I will start a lupus drug regardless of the results as my symptoms are quite bad - fatigue, bad pain in my legs, hands and feet, rash, hair loss, possible kidney problems. It is also a drug that benefits Hughes patients.
The Hughes has caused "probable TIA's". I have had 18 months stroke rehab.
My speech is often slurred, my memory poor - I have forgotten parts of holidays we went on, I forget the way to the supermarket which I go to every week, I can not process information ie follow a recipe or tell you which is left and which is right. I have had to re-teach myself how to read and write and do crafts that I have been doing since a child. I can not feel the surface I am walking on, have heart palpitations and breathlessness. I have had stomach trouble since a child and my bladder doesn't know where its at! My kidneys are playing up and the tingling and tinnitus drive me nuts.
I am furious because apparently B12 deficiency has been showing up on blood tests for 12 years but nothing was really done (2 booster shots) and I didn't realise what the B12 count meant, that my red blood cells were also low and oddly shaped. In 10 years I have seen 7 consultants!! They all missed it even though the blood test results were in front of them
Sadly, it may also be that some of the neuro problems are irreversible as I have had them untreated for so long.
I now seem to have found a good medical team; hence the 14 appointments in one month - lol! One said recently "it's a good job you are so cheerful about all this". I do laugh a lot but inside I am crying for the career I left, the babies I lost and the person I used to be.
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I am particularly upset by the neurological problems as I have read they will probably remain despite treatment as I have had them for so long - confusion, memory loss, slurred speech, numbness and tingling.
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