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)
>. 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