Can any one help me?

Hello ,I will try to make this as short as posible(!?) ..

I have multiple autoimune issues ,SLE,Hashi's ,Sjogrens,APS ,fibro,+++++and multiple allergies and intolerances to meds and foods .I am dairy free .gluten free ( no grains at all) yeast free and I don't cheat as I can become very ill.it's not worth it....

I have recently been very poorly repeat of a flare ( it's now happened 5 times in the last 2years ) where I get the most horrendous headache ,sore throat ,high temperature and flu like symptoms and my lichen Planus goes in full on mode ..in all the areas I have it ( multiple) I'm still not out of the woods yet .i couldn't see out of my left eye so as it was late on a Sunday eve I took what steroids I had ,the pain came down a lot and my eyesite improved ( hind site would now see me going to A/E ,) but was so ill wasn't making good choices for myself ( I live alone).i haven't been eating well ( can't help that at the moment because of LP in throat and really don't have energy or the omph to get up and cook ,I've had soup and stir fry ! ( I do eat meat and solid good but it hurts my mouth at the moment)

which is why I'm here! .i have to add to this shabang .terrible ear ache ( no infection) all the time and what my GP diagnosed me with is Trigminal Neuralgia ...although I also tick boxes for GCA , which symptoms fit the last 5 flare episodes .. he doesn't know which! all symptoms ticked , but not a harden artery on my temple for GCA , And although my ESR on the 25th sept was 57.8..... Apparently not high enough .but I responded well to Prednisalone and have been on a high dose taper for 8weeks ( apparently trigminal neuralgia doesn't or shouldn't respond well to steroids ,mine did ! Yet I reacted badly to all the neuralgia like meds I tried since the summer ,) as I've tapered off of steroids the pain in my head has increased ,but not reached the horrendous pain experienced 9 weeks ago .i have only been outside the house to attend GP visits ,otherwise I have been indoors exhausted and in a lots of pain.

have a rheumy app this coming week and still waiting for a neurologist app .( GP was very reluctant to send me anywhere this time ,as he said"we don't always get answers"!) mmmm I think might be funding ! ?

I usually feel great coming out of a taper of prednisalone .no pain more energy and this can last weeks or if lucky longer ...

But this time a feel tired ,lethargic ,I have terrible pain in my hands and feet and tingling .all my joints are painful ( worse than normal ) I'm unable to function or think straight ( worse than my normal foggy brain) my eyes are blurred ! And my face feels like I'm wearing glasses when I'm not .not numb just fuzzy a funny feeling ! and I'm Dizzy I can't wake in the morning and can't sleep at night!

My bloods from my most recent GP app 30.10.2015 back as

Haemoglobin estimation 13.4 g/dL. 12.00-15.00g/dL

Total white cell count 7.9 10*9/L. 4.00-10.0010*9L

Platelet count. 215 10*9/L. 150.00 -410.0010*9/L

MCV. 88.4.fL. 83.00 - 101.00fL

RBC. 4.79 10*12/L. 3.80-4.8010*12/L

MCH. 28.0pg. 27-32.00pg

MCHC. 31.7g/dL. 31.50-34.50g/dL

( there are more tests lymphocyte neutrophil mono baso etc but not sure if needed?)

!! RED BLOOD Cell distrib width 16.7. 11.60-14.00 !!!

.

Serum ferritin. 126.3. 10.00-130.00ng/ml

B12/ folate level

Serum Vit B12. 289ng/L. 191.00-900.00ng/L

Serum folate. 4.3ngL. 3.86-20.00ngl/L

GP said they were fine when I asked for a copy .i asked again today as I would like to take them with me to my hospital appointment next Tuesday .he agreed it was a good idea . But on viewing them I'm not in agreement with him ! I feel it's better to be still the higher end of the ref. Range ? It's what I've read?

The following tests were taken on 27.9.2015 At ST THOMAS'

Hospital..( at Endo appointment ) had to ask for copy as didn't hear back as I would normally .

25 Hydroxy Vit B level. 63 g nmo/ L)

<30 def

30-50 insuff

>. 50 suff

Active B12( Holo TC) 67. ( 25-108)

Possible B12 deficiency if active B12 ( Holo TC)concentration is between 25-70pmol/Lthe sample has been sent for Methylmalonic acid analysis( MMA)

Please note that the MMA will not be measured if e GFR<60 mL/ min/1.73 M2

< 25 pmol/ L insuff

25-70 samples referred for confirmatory MMA

>70 Vit B12 replete

Cortisol. 119. Ref range 171-536(7-10am). 64-327(4-8pm)

My test was taken at 2pm

( I am going to have a Short Synacthen test next Tuesday )

A METHYLMALONIC acid test was 423!!! (0-280nmol/L)

It says M/A test above the upper limit of ref range suggests

Functional B12 deficiency at tissue level providing renal function not impaired .

Please note That MMA can be elevated independently of Vit B12 deficiency.

( I haven't been on antibiotics but I do have hypothyroid desease)

Estimated GFR 63. ( 70-130) < 90mls/min/1.73m2 are clinically significant .

( because the GFR is low ,this is why they ran the M/A test)

WBC 17.5. ( 4.0-11.0x10^9)

RBC. 5.01. (3.95-5.15x10^12)

HB. 137. ( 120-150g/L)

PVC. 0.426. ( 0.360-0.470l/l)

MCV. 85. (80-100fl)

MCH. 27.4. ( 27.0-32.0pg)

PLT. 346. (150-400x10^9)

NEUTROPHILs. 15.2!!! (1.5-70x 10^9)

Lymphocytes. 1.6. (1.2-3.5x 10^9)

Mono. 0.5. ( 0.2-1.0x10^9)

NRBC. 0. (0)

IF your are still reading ! Thankyou for hanging in there!

My GP didn't understand the ST Thomas' bloods ( diff ref range) and didn't have any idea about the Methylmalonic acid test ..

I suggested that it was better to be in the upper ref range of B12 and ferritin etc ... He said if I wanted to source a B12 and other vits I could tolerate to go ahead and supplement .! I've been reading on different forums re B12 .. I have found out the that Methylmalonic acid is better than Cyanocobalamin.. But not sure of the Methylmalonic blood test results ? It's high do I need more? also hear that

StThomas' hosp do a holotranscobalamin test .which I have rang about .but now reading and writing up my recent bloods ,I'm unsure if that's what I had done on sept 10th Active B12( holo TC)! think probably it's the same but just checking and what it means? In comparison to the B12 folate level ....serum vitamin B12 done at my GPs on 23rd of October ...

There is another blood test done on 27.9.2015 at A/ E but no B12 ,ferritin etc mostly FBC and ESR .. Didn't want to over load the system even more!

Any advice ? Opinions ? Are my levels enough to cause symptoms!?

Many thanks for staying on till the end! X

16 Replies

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  • And more! Just read on the PAS website ..I scored 84 ,And just related my breathlessness as a symptom... I'd thought I was just out of shape and needed to build up my stamina again as I've been ill...the intense sweating and clamyness ...the pain in my back and chest that I put down to my costrochronditis ( but knew it was less painful ) ...ooo I will keep on reading ..

    I chose MrsOverall as a name as my GP asks Overall how are you feeling? ..Overall I feel like C**p! Overall I'm tired ,Overall I'm in pain ,overall I'm out of breath ! Overall I'm fed up ..... I'll stop here ! I think Overall you get the picture .

    This is just one box of symptoms I'm coping with .

    MrsOverallx

  • Yes, the active B12 test was for holotranscobalamin. This is the type of B12 that can enter the cells, so it is a good test for B12 function. Yours is right on the lower limit, so it might indicate a problem.

    Your GFR (a measure of kidney function) is also on the lower limit.

    Methylmalonic acid (MMA) will build up in the body if B12 isn't doing its job properly, so high levels indicate a B12 problem. However kidney problems can also cause high levels of MMA. I don't know enough to tell which might be the cause here.

    One test you haven't had is a very good indicator of B12 functionality. A raised level of homocysteine is a very specific indicator. This test isn't often done because the sample need to be analysed within 2 hours of being taken. But I'm sure they have the facility at St Thomas'.

    You seem to have some confusion between methylmalonic acid and methylcobalamin. It's the latter that you should be thinking of taking. It's available in pills for swallowing, pills to dissolve under the tongue (sublingual), sublingual sprays and skin patches. It's probably a good idea to try the sublingual tablets of methylcobalamin - available from Amazon. It's not possible to overdose on B12 and it will tide you over while the docs sort it all out. You may find that they fix your symptoms, although it's likely you'll need intramuscular injections of hydroxocobalamin.

  • Thankyou Fbirder for replying to my long post .. I'm not looking for to having something else wrong with me, I feel my GP is overwhelmed ( as I am !) re the complex mix of symptoms ... But I have read and there are some symptoms that do add together ,but he is not seeing or adding up ..unless I'm under or over a reference range he isn't listening .. It took YEARs to be diagnosed with Hypothyroidism. he said I had Me / chronic fatigue ,chronic pain syndrome .. You name it! I was diagnosed With it .. I neve asked for my blood tests ..he just said they were OK ..looking at the bloods history when I got wise I should have been treated 8years previously ...

    So this time I know I don't feel right ..I eventually got my blood test results ..

    I will not start supplements until after the hospital appointments on Tuesday and I will see if the Rheumy will run the Homocysteine test ..and if no joy I can ask the Endo appointment people ?

    I will let you know the out come ..

  • I'm no expert in blood tests MrsO but I can see that your MCV and RBC distribution width are high - an indicator of B12 deficiency - but most concerning is the high MMA, together with low B12 !

    With obvious neurological symptoms, as well as these test results, you should be treated with injections without delay according to the BNF and UKNEQAS guidelines below until no further improvement, as there is a short window of opportunity before they become irreversible. I hope this extract from the BCSH guidelines will help persuade your GP to begin injections as soon as possible:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    ukneqas-haematinics.org.uk/... :

    b12deficiency.info/b12-writ...

    cmim.org/pdf2014/funcion.ph... :

    The above latest UK research document is supported by many research papers and has a useful summary if GP won't read full document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

    I'll post a B12 video separately, from which you will see that Dr Carr's friend, also a doctor mentions low B12 and high MMA

  • Thank you Polaris for replying to me and posting the links for me to read and watch .i haven't posted before re this problem ,I kept thinking I'd feel better ,get over it or bounce back ..but seeing my results this morning gave me the omph to Sort me out ! I can't deteriorate further .it is something I'm going to have to delve into its when you feel at your worse that you have to fight hardest! ., I have added things to the reply above ...

    My Gp who works only in the reference ranges .. And having read your reply I believe it's the same situation I found with thyroid medication and with PA or B12 insufficiency /deficiency ...it seems there is a up hill battle to keep supplementing when Levels reach the optimum .Drs think your Normal again! I will have a good read and try to take it all in

    I will let you know my out come

  • PS Many researchers believe that leaky gut is the ground zero of autoimmune disease. Four in our family have Hashimoto's, two with B12 deficiency. I've found all my digestive problems have disappeared since avoiding gluten and eating several spoonfuls of sauerkraut daily (better than any other probiotic). Hopefully, it is helping to heal the villi in my stomach wall.

  • Haven't wrapt he'd it yet ! I was diagnosed with leaky gut / gut diabosis just after my Hashi's .. As well as allergies I also eliminate candida promoting foods and take probiotics ! I'm gluten ,grain,super ,yeast dairy free.! Thankyou so much for replying to me x

    Ps have been diagnosed with osteoporosis this year .. And had a big operation on my back because of discs 5 yrs ago ..

  • Thankyou for posting the film ...have just watched it through ..

    I'm very shocked at all of these peoples story's ..

    I will Persue this line for myself .and also thinking of my sisters problems and my mum..goodness it's frightening x

  • My sister is very ill again at the moment, misdiagnosed with

    ME for years and then dementia, unable to walk far. We had to battle for eventual monthly injections but this is, obviously, still not enough.

    We have decided that self injections are needed and have ordered from Amazon, Germany, with help from this site. B12 is involved in DNA and is passed down families - our mum had PA as well as Vit.D deficiency

  • I'm sorry to hear of your sisters misdiagnosis .i do hope you are able to obtain the injections and she is able to improve ASP and her quality of life is made better x

  • A really good idea Kai.

  • I have been diagnosed with leaky gut, candida, fibromyalgia and chronic fatigue syndrome. I am also coeliac. I have been so poorly for the last few years and had many doctor and hospital appointments with little sympothy! I have argued the case of b12 deficiency for the last 2 years but my results have always been just in the ok area of 167-265. Last month I gave up with the NHS after being advised to take anti depressants, pain killers and sleeping tablets and referred to occupational therapy because I could no longer walk and struggled to look after myself.

    I contacted the Penicious Anemia society who helped me get the right treatment. I now self inject and can honestly say it has changed my life. I can walk and work and think and speak...it's a miracle! I had all the same symptoms as you and they are starting to disappear. I urge you to contact the Penicious Anemia Society and they will help. Best of luck x

  • Thankyou jellyjam1 for responding to me .im sorry your suffering from so many things X I will certainly be persuing this line .. I have SLE hashi's, Sjogrens ,Lichen Planus,fibro ( which did improve when I started T3 only treatment for my Hashi's) osteoporosis ,neurological problems , Fowlers syndrome++++ so. It's understandable that my GP sees me as a complex mix and doesn't know what to do or suggest . ..at my last appointment he said I couldnot have anemia as I don't have periods any more .( I'd asked could I be anemic because I felt so tired and felt so awful?) He also said he was waiting for things to morph into something else , as they normally always do like a rash or something! Have you watched the film posted in the previous comment ? Scary .. But grateful to have watched it ..I will sort me out ,

    Thank you again il let you know!.

  • I'm so glad you had a good outcome Kelly.

    This is what Martyn Hooper, PAS spoke about in the House of Lords this year:

    "Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies.

    The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

    We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands"

  • Hi Mrs Overall,

    A few other useful links

    pernicious-anaemia-society.... 01656 769467

    b12d.org

    martynhooper.com/

    patient.info/doctor/macrocy...

    patient.info/doctor/pernici...

    bmj.com/content/349/bmj.g5226

    Google "BCSH Cobalamin and Folate Guidelines"

    Books

    Could It Be B12 by Sally Pacholok and JJ. Stuart

    "What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    "And had a big operation on my back because of discs 5 yrs ago .."

    Just wondered if you had any nitrous oxide anaesthesia during your operation. Nitrous oxide inactivates B12 in the body. See link below.

    gov.uk/drug-safety-update/n...

    Another blood test that may be helpful is a blood smear or "blood film". B12 deficiency can affect the shape of some blood cells. This test can be done privately.

    patient.info/health/full-bl...

    b12deficiency.info/b12-test...

  • Hello sleepy bunny.

    Thank you for taking the trouble to reply and for all of the links .lots to read and research ...

    I'm not sure if I had Nitrous oxide ? But I can find out ...

    It does seem that pieces of maybe a new puzzle are coming together !

    And once my hospital visit is out of the way I will start to supplement ..

    Many thanks

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