Related to and following on from, the below post...ree

I saw my shiny new GP again Monday am. Not quite as shiny now though.

Blood results End November (10/nine above Looks like squared in algebra. Follow me?)

FBC

WHITE CELL COUNT. 6.1. 10 9 above/L. 3.9 -11.1

Red c. Count. 4.17. 10 12above/L 3.8 -5.8

Haemoglobin. *. 114. g/L. 115 -165

Haemocrit. 0.352 0.350 - 0.440

Mean cell volume.v 84.4. fl. 78.2 - 101.0

MCH 27.3 pg. 25.6 - 34.8

MCHC 324 gg/L 310 -360

Red cell dist width * 17.1 % 11.6 - 14.6

Platelets 393 10 9above/ L 150 / 450

Neuts. (abs) 3.7 " 1.8 - 7.5

Lymphs (abs) 1.4 " 1.0 - 4.0

Monos (abs). 1.0. ". 0.0 - 1.0

Eosos (abs). 0.1. ". 0.0 - 0.4

Basos (abs). 0.0. ". 0.0 - 0.2

Alk phos 58. U/L 30 - 130

Calc + Alb

Calcium. 2.45. Mmol/L

Adjusted calcium. 2.45. Mmol/L 2.00 - 2.60

Albumin. 42. g/L. 35 - 50

Creatinine. 59. umol/L. 53 - 97

eGF (CKD-EPI). >90. mL/min/1.73m*2 >60

Note ckd/epi gives better estimate of GFD compared with MDRD

GGT 36 u/L 0 - 39

LFT

ALT 26 u/L 0 - 49

Bilirubin 4 umol/L 0 - 20

Phosphate 0.91 " 0.80 - 1.50

Sodium 136 " 133 - 146

Potassium 4.6 " 3.5 - 5.3

Urea 3.9. ". 2.8 - 7.8

Ok new GP cursory glance says fine. I query size of rbc as in May said to be "15" No no you must have microcytes as blah blah 120 days, less iron. So size small not like B12/PA correct

I spot asterisk and 17.1 correct me but Macrocytes yes?

I spot asterisk and ask about heam 114 /115 base number

No haem fine.

Will start you on liquid Ferrous Sulphate as I notice you had a reaction to it in 2007. Me, no recollection nor hubby.

3 x 5 ml day. But start one 5ml per day for week. But dont start until after biopsy on 20th as it stains bowel. Me will it impact biopsy result though? Shrug of shoulders.

Me well rather than wait another two weeks, I feel so ill, can I ring path lab. Good idea quoth she.. I rang lab asked question. Answer... "no idea love".

Got letter of support for sedation for biopsy, refused and bullied last time had endoscopy, so defo not doing that. Sedation or I walk. Now as I have only been re suffering gluten for 18days anyway, which I know is not long enough anyway and because Im sick of this...

TA DARRRR I took two spoons iron (so far...) sep by several hours yesterday and today self injected B 12 whilst on MRI premesis (OT) appointment ( they have an A n E) as a precaution against mis hap and

SOD 'em ALLLLL

My health and well being are more important to me than thier pussy footing around I feel really ill. Saturday night when in bed new pins and needles in legs Sunday, spaced out head, nooo I am tee total, wise guys, and very odd feeling almost like out of body experience. So much so stayed in chair all night scared to go to bed! After GP blah and getting hard copy of results above, decided "I treat patient not numbers" a catch phrase to repeat not actually believe in.

So ditched em. Folate asked for in blood taken Monday plus Mag Calc ?potassium and B12 ( ha ha) ignored my quote of not in cells.

So, once more help please. Your take on bloods above and then advice of what I must take as OTC supplements. I shall follow your line re Folate as result not in yet. Will do D as down to 20 something, noted but not acted upon last visit. Do not take any vits at present except one Vit D capsule prescribed to top me up but not enough according to last bloods.

One other thing on last, bloods, Oct. Gastro asked for IFA but on report not given says Not requested 😑😑 I read it on form.

Sorry, lot to read but burned my boats will take iron, all being well, if not can I get iron injections as well as SI B12? Shall confess to supplementing B12 but not SI, Im not that daft.

So looking forward to no neuropathy, pain or fog and to having a bit of energy and life back.

Yours, reclining on my sofa

Your wisdon very much appreciated

πŸŽ…βš½οΈ

Last edited by

15 Replies

oldest β€’ newest
  • Hi footygirl. Just to say I love your posts, they are so funny/witty, I know there is nothing absolutely nothing funny about your experiences, its a real (& so familiar to us all) tragicomedy, i.e you laugh or cry.

    And I'm sure you must have cried, but somehow you retain a sense of humour, the way you relate events is like an Alan Bennett sketch i.e lab 'don't know love' & doc, re impact on biopsy results 'shrugs shoulders'. It is so laughable/tragic that we are all urged over & over to own our own health problems (whatever they are) be pro~active in our own health care. 'You try it' I scream hysterically.

    I cant comment on your results, I don't know enough to help you (but I'm not a doctor haha!), in anycase you seem to have your eye on the ball so to speak in as much as you know what to ask/do!, but I'm rooting for you.

  • Thnks so much bud/hon!πŸ‘‹πŸ‘‹

    Its just me! I expect you are really right. Laugh or cry. I only know on Sunday I was clinging on ( the starboard bow) for dear life and felt inches from death. No one can experience that and then leave it to the Mallards, again. I gave GP another chance but she blew it. So. No more waiting for all the above.

    There have been a slew of posts so hope mine doesnt get buried before a guru can comment. Taken the plunge, need that red n white round thing for a while til all is explained and ok'd. Daft.

    You cheered my day! BTW. I have to tell someone this. My post of Santa's good wishes, see MEET MY MATE. Reported as Spam cos I use so many sites om Hu. Yup. I have 5 autoimmune diseases. If I want to say merry christmas to the MOON and there is a place on Hu, no one is going to stop me!

    Ha ha to bah humbug!!

    Thanks so much 1capricorn!

    πŸŽ…βš½οΈ

    Ps JUST SO DARN PLEASED YOU AINT A MALLARD!!😘

  • Hi Footygirl. Sorry, not much time right now so will have to be quick...

    Haemaglobin low - indicative of anaemia

    Heamocrit - also on the low side - shows insufficient supply of health red blood cells - indicative of anaemia

    Red cell distribution width - 17.1 - indicative of large red blood cells - macrocytic anaemia - found in B12 and or folate deficiency (amongst other things).

    MCH - low but in range - indicative of some smaller red cells found in iron deficiency anaemia

    Overall the picture looks a bit confusing, but if you read the results over and against each other, the picture is one of both macrocytic (large cell) anaemia (folate and or B12 deficiency, perhaps other causes) and microcytic (small cell) anaemia - iron deficieny.

    Seems to me you GP is just looking at numbers and not trying to figure out what the whole FBC 'picture' is.

    Ask your GP to do ant-IF antibodies.

    Sedation - it is usual for patient to be given a choice about sedation. If they try to go ahead without giving sedation and in opposition to your requests - this is called assault.

    Take care with the iron prior to procedure - it probably won't affect the biopsy directly but it will mean that you will be coated in iron - and they won't be able to see anything - so they'll send you away without doing the procedure. Instructions about when to stop iron are usually given in the instructions sent prior to the procedure.

    I'm surprised that there's no result for ferritin - or better, you could do with a full iron panel to see what's happening on the iron front.

    Also - sorry, don't have time to check back - how's you B12 level?

    Also - thyroid meds under control?

    Hope this helps and good luck with the tests πŸ˜€

  • Bless you. Ferritin is 7 which started hunt. IFA was requested, I read it, was pleased. On results said not asked for. My GPC antibodies, just found out negative.

    Had private thyroid blood test. GP looked at it, sniffed neither remarked nor noted results! Showed em on TUK site feedback ok.

    Last time B12 done 246. " in range" . Me blah blah not a blind bit of difference! The usual.

    Very useful info

    Thanks so much for your help

    πŸŽ…βš½οΈ

  • πŸ‘ Forgot to say...usually with macrocytic anaemia the MCV would be high but...low iron and low haemaglobin can lower the MCV and as you have both, this is why your MCV looks to be in normal range - and the macrocytosis is evidenced by the high RCDW πŸ‘

  • All fab stuff. Thanks so much

    πŸŽ…βš½οΈ

  • A higher than normal RDW just means there is a wider range of sizes of red blood cells than normal, not necessarily that they are larger - they could be smaller than normal instead!

    labtestsonline.org/understa...

  • I'm not an expert, but you definitely have something going on. The low hemoglobin suggests low iron and the high red cell distribution width means there are cells of very different sizes floating around in your blood. Low iron does seem likely, but I notice that your doctor didn't test any of your iron levels. If you're willing to pitch the battle, it would make sense to go back and request that they at least find out what the heck is going on. They need to do a complete iron panel: serum iron, ferritin, transferrin, total iron binding capacity, and iron saturation percent.

    One thing to be aware of is 'anemia of chronic disease'. It can sometimes be mistaken for iron deficiency anemia, but the treatment is very different. Oral iron supplementation is useless in anemia of chronic disease and can actually cause damage if too much is ingested.

    Unlike B12, it is possible to overdose on iron. So it is usually best to get find out your levels before beginning supplements.

  • Wow. Lots there Galixie for me to take in.

    Thanks so much for your time and all the information. The full panel makes sense but getting docs to do that? Hm. GP thinks she has sorted it. B12 def? PA? Pah!

    I note your warning about toxic iron but starting ferritin at 7 I may have a way to go, so I think I may have a bit of time to try to get things re sorted. I will slow down, ie one 5ml a day of liquid iron.

    Its like a wet bar soap, this.

    GP is away for a while. I could go to surgery and get copy to find out Folate level taken on Monday. Adding that to the above, would it add much? Am I looking at high Folate or low? For what??

    Many many thanks.

    Love

    πŸŽ…βš½οΈ

  • As comments above suggest that you may have both macrocytic and microcytic cells will your GP order a blood smear (aka blood film) as this may show both macrocytic and microcytic cells in the sample. It's possible to get this test done privately if not available through GP. In past I sometimes used to offer to pay for a test, GP surgery were not keen on ordering.

    labtestsonline.org.uk/under...

    patient.info/doctor/periphe...

    My thought on reading your results was I wonder if she has an iron deficiency which is masking the effects of B12 or folate deficiency on red blood cells. As ferritin levels rise it's possible that MCV and MCH levels may rise because iron levels are no longer masking the effect of low B12/low folate on red blood cells. Can't see a ferritin result.

    patient.info/doctor/macrocy...

    patient.info/doctor/pernici...

    labtestsonline.org.uk/under...

    Monos (abs). 1.0. ". 0.0 - 1.0

    Did notice that your Monocyte count is at the top end of the range. Did GP comment on this?

    I am not a medic just a person who has struggled to get a diagnosis.

    Link about full iron panel

    labtestsonline.org.uk/under...

  • Ferritin is now 9

    Folate is 6.1 ug/L >5.40

    Serum B12 is 549. 181 - 900 ng\L !!!!!!!!

    Magnesium 0.79. mmol/L 0.70 - 1.00

    Calcium adj conc 2.4 mmol/L 2.20 - 260.0

    Albumen 42 g/L 35 - 50

    GP only insistant cannot be B12 /PA

    I spplemented B12 in Sept then stopped was 246 in May

    Does this make any sense to you?

    πŸŽ…βš½οΈ

  • Footygirl,

    Check your adj calcium range. It should probably be 2.20-2.60 which would mean your calcium 2.4 is mid range and doesn't need supplementing.

  • Hi,

    "GP only insistant cannot be B12 /PA"

    I had GPS/neuros/rheumy/endo insisting I was not B12 defic/PA. Strange isn't it that I only started to improve when I started to treat myself with B12?

    Why not B12 defic/PA?

    Can you find out exactly what reasons your GP has for saying that you do not have B12d/PA? Then people on the forum might be able to point you to info that may help GP to reconsider the possibility of B12 deficiency. Sometimes I have written letters in past to GPs which hopefully is less confrontational.

    1) Is it lack of macrocytosis(enlarged red blood cells??

    Think there is something in fbirder 's summary. See third pinned post, last link in list. I gave copy to GP. Also something about this in BCSH Cobalamin and folate guidelines.

    b-s-h.org.uk/guidelines/ Click on box that says "Diagnosis of b12 and Folate deficiency" think it's on page 3 or put "Cobalamin and Folate guidelines" in search box.

    2) The fact that your B12 result is within range?

    bmj.com/content/349/bmj.g5226 See 5th summary point

    b12deficiency.info/b12-writ...

    3) An IFa (Intrinsic Factor Antibody) test came back negative?

    This link is to a flowchart in the BCSH Cobalamin and Folate guidelines and makes it clear that Antibody Negative PA can be diagnosed in some people (PA where IFa test is negative)

    stichtingb12tekort.nl/weten...

    4) The GP does not think you are symptomatic for B12 deficiency?

    pernicious-anaemia-society.... click on Symptoms Checklist. I gave a copy of symptoms checklist to GPs with all my symptoms ticked.

    5) Some other reason?

    PAS

    Are you a member of PAS? sorry if i've asked you before

    pernicious-anaemia-society....

    I came to the realisation a few years ago that the only person who was willing to help me was myself so my advice is to read as much as you can about B12 and collect evidence if you feel b12 is an issue. It took me nearly 20 years to get NHS to agree I was showing signs of b12 deficiency. 20 years is a long time to go without treatment.

    Letters to GP?

    b12deficiency.info/b12-writ...

    Link above does not mention BCSH Cobalamin and Folate Guidelines which I do if writing about B12 to doctors.

  • I asked if I should see a Heamatologist. She said I didnt have a blood disorder. She seems intent on drawing diagrams of "head office" ordering iron from the "store" which if empty goes to the "warehouse" and if that is empty cells get smaller cos less iron. So microcytes not macrocytes though dist width 17.1, which I have learned rather means a mix of both types. My ferritin is 9 my folate 6.1 < 5.40.

    What gets me, and everyone else I think, is that there is not the tiniest crack in the door toward other possibilities. Slam that door shut and DO NOT let anything else creep under or round it. Diagnosis is not an exact science is it? So how can these people have their minds so welded shut?

    I am self injecting, started this week, because Im not willing to wait for some breakthrough from these people. I will take folic acid too though unsure of calcium too. Calc 2.4. 2.20 - 260.0

    Thanks SB. I will try to retain more of what I read. Yes I am a member and follow all the links you and others provide. I am so tired though, plus tired of the discussions with closed ears, plus tired of the sheer will it takes to keep going. Lets hope the liquid iron supplement she has me on, plus the injections show some improvement soon.

    Thanks so much guru

    βš½οΈπŸŽ…

  • Some people consider formal complaints about lack of treatment but I think this is a very difficult route to take especially if someone does not have a formal diagnosis. I know two people who went down this route and it was an unpleasant experience for them.

    citizensadvice.org.uk/healt...

    "Gastro asked for IFA but on report not given"

    I can't see how the GP can definitely say you do not have PA if an IFA(intrinsic Factor antibody) test has not been done and even then it's possible to have Antibody Negative PA. I have occasionally got tests by offering to pay for them. Can you get an IFA test done privately? If it was positive you could go back to GP with proof of PA.

    The problems as i see it with self treating without a diagnosis is that it can make it virtually impossible to get a diagnosis in the future and a person may be left with a lifetime of self treatment. However after years of trying to get treatment I did eventually self treat as I felt I could not cope any more.

    is there any chance the HDA pct can help with a second opinion?

    hdapatientcaretrust.com/

    B12 deficiency info website

    b12deficiency.info/

    The person who runs this website is sympathetic and might be able to help with any letters you want to write. She can be contacted by e-mail (there is a tab at top of page)

You may also like...