Hi, new here! Woke up 4 months ago with severe leg cramps both legs and feet with numbness up to my knees and severe back pain. My Dr. said all blood work was normal and it was diabetic neuropathy. The numbness progressively got worse and I was exhausted and all my bones and muscles hurt yet my Doctor said nothing else was wrong. She insisted I was depressed but I knew something else was going on so I found a new Doctor.
He ordered new blood work and compared it to previous lab results and told me immediately I had megaloblastic anemia which was a more serious form of pernicious anemia. I just don't understand that. They both have b12 defciences from what he told me and sometimes he refers to it as PA and sometimes as MA.
In all of my lab work, even the results my old Doc said was "normal" my MCH and MCV was moderately elevated and my RBC were moderately low at 2.5. Although my b12 levels are 240 is states right there on the lab slip that anything between 200-400 can still have neuro symptoms and should be looked at carefully with other test results. My folate level is 1.2 and has been that low for the past 3 times ( 1 1/2 years) I had blood work. My Vitamin D level is 16.
No wonder my whole body aches. Strange thing is I remember 10 years ago calling my sister and asking her what MCH and MCV were and why mine could possibly be so elevated since she was working in a lab at that time. I can't remember what she told me but I guess I brushed it off at that time. So I guess I've had this a long time. I'm looking forward to seeing what it feels like to having energy again it's been so long I can't remember.
So is there a difference between pernicious anemia and megaloblastic or is it one and the same or variations of each other? THANK YOU!
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mislauren
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Hi mislauren I'm not medically qualified but whatever acronym it's called with your low levels of B12 and Folate you should be getting injections immediately.
Treatment of cobalamin deficiency
"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,
Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks.
The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement.
However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"
There are others on here who will be better able to explain the "differences", meanwhile I hope you get the treatment you need and wish you well.
I did forget to mention I am getting b12 injections but only once per week and I have received 3 so far. He told me it would be this way for 3 months and then monthly probably for a lifetime. I was satisfied with this until I read about the loading dose. I saw a link somewhere I will go back and look and print it out and bring it back to him to read.
For the folate he prescribed 3 mg per day.
The neurological symptoms have not spread and are now holding their own at the least so maybe this small dose is doing something.
I found this link interesting as I have not slept well in a couple of years and do have intestinal issues as well. It was kind of confusing though about the different b vitamins. I bookmarked it and need to read it through a few times over, thank you very much!
Yes I found it very helpful as a month after starting Vit D supplements, due to longstanding undiagnosed coeliac/gluten, plus I have Hashimoto's - I started to get very dizzy, decreased energy, "burning" soles of feet (and at times "burning' arms & legs too) , pain in adrenals etc etc
I understand from this link, that this is peripheral neuropathy, caused by low B5. I started supplementing with vitamin B complex - as recommended on the link as "all the B's need to keep together". So B complex recommended rather than individual B's. This then revealed hidden low B12, now supplementing this too.
As Marz says below......UK Vitamin D range - level of 50 is considered by GP's to be OK & "in range", but many of us with Hashi / on Levo find we need D level nearer or around 100 to feel OK (top of range is about 200)
If on loading dose of Vitamin D - As well as checking calcium, good idea to check parathyroid level too
Ok so just getting a simple B complex supplement will work? That was what I was confused about. I went to the store and there was so many to choose from all claiming to be the one that you need.
I am 15 years celiac and 2 1/2 years now with severe diarrhea. I certainly have problems digesting food and I'm sure vitamins and minerals are being bypassed as well. Friends tell me I need a liquid vitamin so I will look into that.
I have had burning in the arms and face but that seems to have faded thank goodness. Not sure if that's due to the 3 weeks of d3, folate and b12 injections but none the less it is gone.
mislauren: Straightforward question - simple answer - No. Megaloblastic Anaemia is not the same as PA - it is one of the symptomatic conditions CAUSED by Pernicious Anaemia. Other possible conditions are: Glossitis (swollen tongue), peripheral neuropathy (damage to nerves outside the spinal chord) and damage to the spinal chord itself and all that that implies.
If you have MA you will be very tired. The B12 deficiency (PA) causes a malfunction in the production of red blood cells. They become very large and inefficient at carrying oxygen, so all of your tissues (including nerves, muscles and your brain) do not have as much oxygen as they need. Bad things then happen.
From your description of back-pain and leg-numbness it sounds like a pretty advanced condition of long-standing particularly if you have MA. You need to take early and effective action to stop the progress of the PA. The lab numbers on blood tests can be deceptive. They can measure an inactive form of B12 in the total. You need to be treated to the symptoms NOT the numbers on a piece of paper. It can be difficult to get doctors to accept this. Time-limited sausage-machine-medicine allows them little time for reflection or tailoring medication to special cases.
If I was in your shoes I would be seeking loading doses of B12 (there is information elsewhere on this site as to what this means - see previous advice from clivealive) every day until nerve symptoms abate. (It will take 3 to 4 months from the inception of adequate B12 for MA to completely abate as this is is the replacement time for red blood cells). I would be seeking immediate action before the nerve damage becomes permanent and more extensive. I would need to force the issue in these circumstances. Time would not be on my side.
Back pain and leg numbness is also a condition of a prolapsed disc in the spine. If it is one leg, this is a possibility that needs to be eliminated. It is not unknown for two unrelated conditions to be active at the same time. This elimination process should NOT stop the addressing of the PA but run in parallel. You know for certain that you have PA (because you have MA). Dealing with the PA would be my No1, No2 and No3 priority.
Get in there gal and give it your best shots. May The Force Be With You
It's a shame that doctors don't have time to explain these things properly.
Megaloblastic Anaemia (big-celled blood lack) is caused by B12 deficiency which is caused by Pernicious Anaemia.
One of the things in which B12 is an important factor is the manufacture of DNA. Making red blood cells is a high-turnover process, they get used up fairly quickly so have to be replaced frequently. Although red cells themselves contain no DNA their precursor cells do. If there's not enough B12 then the red cell 'factory' can't make DNA fast enough for the cells to divide quickly enough. But they do keep on growing, which results in extra-large red cells. These don't work as efficiently as normal red cells, so you feel more tired than normal.
Think they often don't explain it properly because they don't understand it properly ... and still seem to believe that it is the anaemia that causes all of the symptoms of B12 deficiency rather than the other way round.
MA can also be caused by folate deficiency ... which is because both folate and B12 are involved in the processes that produce healthy red blood cells.
MA is not a more serious form of PA - Quite possible to have PA and for it to be affecting nerves very seriously without MA actually being present ... but it is quite common for GPs to think that they have caught a B12 deficiency early because there isn't any sign of MA or any macrocytosis.
Wish I had a magic wand I could wave to make medics realise exactly how B12 deficiency works
Sorry I did not address the Vitamin D issue in my previous response. SlowDragon is right re neuropathy among other problems caused by low Vitamin D. A level of 16 is way too low. From memory I think that it should be 30 (and many think this reference range is set too low. An outdoor worker can reach 60).
Vitamin D is made from cholesterol in the skin on exposure to strong sunlight (about 40,000 iu per day in good sunshine). It is stored in our fat tissue to tide us over winter. If we do not get enough sunlight on our skin in summer (the UK is particularly problematic) we will not have enough for winter and our immune systems suffer (? perhaps why flu epidemics strike in winter?). If you have PA this will only throw fuel on the fire. (Moslem women for cultural reasons have real problems with this). I take 5000iu of Vitamin D3 every day through winter.
There is a book on this subject that is well worth reading. It is "The Vitamin D Prescription" by Eric Madrid MD. There is also a book on B12 deficiency and PA that is pretty much the bible on the subject. It is "Could it be B12? An Epidemic of Misdiagnosis" by Sally M Pacholok. These are well written and enormously useful books. If you need to debate with your doctor, you will need to be well informed. These books will help.
I did set out today with intentions to stop by the bookstore to pick up these books but my legs gave out on me early. Just too tired to make it through my errands. However in responding to other posts regarding d3 and coming back and reading your post I see that you are taking 5000 iu through the winter at least? My dr. has me on 4000 iu to start with a level so low? I will speak with him on Wed. Thank you.
look further into vitD deficiency, that low a level needs to be paid attention to.
We need sunshine (we also need to be eating a certain amount of appropriate fats for our body to convert cholesterol and sunshine into vitD).
Eat more fat and get some sunshine (although in the UK the sun's only strong between april and september. For next year t's worth getting 10-15 minutes unprotected sun around lunchtime over the summer to get you through the dark winters.
Interestingly enough I live in Florida and don't have to endure the dark winters. I avoid the beach and outdoor activities yet am always told I have a very nice tan. If they could only see my legs
Wow thank you I am ever so humbled by the replies! I understand more now than I did before I knew that by reaching out to this community would be helpful. I wasn't sure though to reply to each post as a topic came up or to wait and post at the end as there is so much to say?
Was your VitD measured in nmol/L or ng/L - if it was the former then your level needs to be around 100 or 60 for the second measurement, You should talk to your GP about loading doses of VitD too - and then take a maintenance dose.
When taking large doses of D3 it is important to also add in VitK2 - as this will direct calcium from the arteries into the bones and teeth. VitD improves the uptake of calcium from food and too much is not a good thing. Often advisable to have the calcium tested before starting VitD. The range is very narrow so difficult to manage. Just to ensure you are not over range.
With so many things being low - I am wondering if you have had your thyroid tested ?
I am not a medic - just a Hashimotos gal with a B12 issue
From what I read CALCIFICATION is one of the most killing of agents. You have to gen up on the chems which destroy BUT allow CALCIFICATION. You may well get most accurate information from the websites. Consider the HALICIDES and their binding effects on magnesium. Consider the effects of many medicines on their depletion of essential vitamins/minerals. Look at WARFERIN. See the history of the recent most important and advertised (published in media) pills; Suddenly they disappear; to be replaced by a new and wonder PILL. We live in the ERA of PSEUDO SCIENCE. The internet has greatly improved visibility.
The Magnesium Miracle - by Carolyn Dean - could be an interesting read .....
OK your TSH was in a good place in the range - that is if it was tested early in the morning and after fasting
I have seen so many thyroid test results where the TSH and FT4 are good in the range but the FT3 is low. T3 is the most active thyroid hormone and needed in every cell of the body so when low things begin to go wrong.
I have read recently that diabetics should have thorough thyroid testing - not just the TSH. It is all Endocrine after all - and when one gland is off kilter then others can be too.
Parathyroid hormone ? - as mentioned by SlowDragon - maybe have it tested as your calcium is low.
Hope you can soon complete the puzzle and find good health.
Yes early morning and fasting. I am going to put that book on my list thank you for mentioning it. I think my father mentioned years ago magnesium was good for leg cramps? Thank you for your help!
Again, thank you for all the wonderful, helpful replies. I can add some information that may be helpful to some when replying.
1. I am 34 yrs insulin dependent diabetic with good numbers and other than a little bit of numbness in the very tips of a few toes have never experienced any other complications. That is why it shocked me to wake up one morning with full blown "diabetic neuropathy" as my old Dr put it all the way up to my knees in both legs. Also experienced numbness in various parts of my arms and my face as well. Since receiving b12 injections 1x week (I now know should be more) d3 of 4000 iu (maybe should be more as well) and 3 mg of folate per day at least the numbness has not spread and the right leg is back to almost normal and the left leg is not so harsh.
2. I am 15 years celiac maintain strict gluten free diet.
3. However my diet is not so good in the sense that it is so limited these days. Two 1/2 years ago basically overnight I began having severe diarrhea. It has not stopped since despite many different meds and treatments. In the beginning a colonoscopy revealed absolutely nothing, no chrons or ulcerative colitis or such. Stool samples normal. Interestingly enough I was diagnosed at the time with "Chronic-severe Inflammatory bowel disease". Which is what you get when you have chron's or UC but alone I don't know how they arrive at that. So in the meantime we search for a medicine that works. But I can not eat most fruits or vegetables they are like a laxative for me. We have some great gluten free bread here and grains I try to buy but the price at $6.00 a loaf is difficult. Brown rice, sweet potatoes , meats, cheeses, eggs are my go to foods. Dairy does not affect me either way.
4. Migraines also started 2 1/2 years ago. Tried alternative therapies before settling on a medication. Daily headaches which the pre-aura wiped out my peripheral vision and kept my down for hours was much too debilitating to not settle for medication.
5. My back pain also started several years ago but was just kind of bothersome more than anything. It wasn't until that fateful morning I woke up and my life was totally different that it turned into horrific pain. Pain so unbearable it was shooting down the backs of my legs. Making my butt hurt too. I had gone to my neuro Dr. after that morning and he did an MRI on my head and my neck to check for MS, which were normal but nothing on my lower back. X=rays on lumbar show all 5 vertabrae to have serious problems and it states in the report that there may be a herniation in one but in the conclusion it does not reccomend and MRI so my insurance company will not cover it. I'm just not sure why it went being tolerable to being so severe I could barely sit down or move basically overnight with the rest of the stuff that happened. I went to bed one person and woke up in a different body.
6. I still have the severe cramping in my calves. This has never gone away since that morning I woke up. It feels like I have been working out and my muscles are sore from the workout. They constantly stay that way (stiff and sore ) with cramping in between. Perhaps this is the calcium + magnesium I may need? I also still have severe pain in knees I feel like I need a double knee replacement. I don't know it it's the bones or the soft tissue on the insides of the knees but I just want it to go away!
I know this is a lot maybe explains more. Thank you!
Hi mislauren, Hopefully with more b12 and other supplements, D, folate, maybe calcium and magnesium, you will start to improve, fast! As you can see, we are all rooting for you!
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A clinical picture of a B12 deficiency and PA explained.........
Can you have PA if Haemoglobin is ok?
Case Report of PA with SACD in Japan
Devastated at docs. 
Lab results - PA?
