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Pernicious Anaemia Society
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NEWBIE TO THIS FORUM: BLOOD TEST HELP PLEASE?

First, please let me apologise for this long post! :(

Background: I have had diagnosis of ME/Fibro/Trigeminal Neuralgia for 29 years. Got very ill, very quickly at age 38 (so I'm now 67).

I started having symptoms similar to what my mother had, and she nearly died from Hypothyroidism from 'in range thyroid tests'. I asked Doc for blood tests in March 2017 and then further info in May for B12, Ferritin and Serum Folate ~ and then was advised to get copies of my Blood Tests (didn't know I could even ask!) and I started to slowly see that many readings had been ignored by the Surgery when it should have been possible for them to tweak things here and there ~ and as for my hair loss, which is almost looking like 'male pattern baldness', the Doc isn't at all interested. :(

However, with the help of HU and reading a bit, and getting quality advice, it's been suggested that I ask for advice from your forum re potential PA, and would very much appreciate your help and advice please?

Due to some apparent plunges in certain levels (see below), I'm having further Private blood tests done by a different service and will post these when I have them.

The Surgery were adamant that they wouldn't accept any blood tests that weren't done by the NHS. Initially, I didn't even know, or have the brain space to take the time to think, that the NHS 'outsources' their blood tests. I've been in "D'Uh" mode for quite a while now. Very brain fogged (concentration of a debilitated gnat!), suddenly taking much longer to heal, having constant/repeated infections / inflammation (had a sudden onset of a massive gallbladder inflammation, even though an earlier ultrasound which I was told was for my intestines (I've IBS) also, involved an extremely painful check of my gallbladder which showed no obvious stones but which U'm pretty sure caused the infection/inflammation of my gallbladder, in conjunction with me wanting a real cream doughnut at Easter (no easter eggs for me!) and at that time I was gluten-free and no doubt I gave my system a heck of a shock! (Oops ~ my bad!)

Onto the bloods:

VITAMIN D:

NHS Blood Test 2 May 2017 ~ 25OH VITAMIN D ~ 46 nmol/L ~ Insufficient Range: 25 - 49.

I spoke with Doc re this and said that rather than annual Injections, I'd probably be better on tablets. That was totally ignored.

I checked with the District Nurse and she said I wasn't due a VitD injection again until December! So from December 2016 to 2 May 17, I'd sunk into the 'insufficient' range (without an injection due for a further 7 months), and come July, I'd sunk even further into the insufficient range.

MediChecks 28th July 2017: Blood Tests (Tests NOT accepted by Surgery, as not NHS):

25OH VITAMIN D ~ 39.3 nmol/L ~ Insufficent Range 25 - 49

FERRITIN:

NHS 2 MAY 2017: Ferritin 117.2ug/L ~ 12 - 300

MediChecks 28 JulyFerritin88.5ug/L ~ 13 - 150 (Not Accepted by Surgery but is at least within range.)

B.12

NHS 2 MAY 2017: B.12 ~ 349ug/L ~ 211 - 900

MediChecks 28 JulyB.12 ~ 98pmol/L ~ 140 - 724 (Not Accepted by Surgery)

SERUM FOLATE:

NHS 2 MAY 17 Serum Folate: 6.7ug/L 2.4 - 20

MediChecks 28 July Serum Folate: 0.91ug/L ~ 2.91 - 50 (Not Accepted by Surgery)

MEDICHECKS DOCTOR'S COMMENTS: (Not accepted by Surgery!)

B.12 Recommend checking full blood count, intrinsic factor antibodies and gastric parietal cell antibodies to assess this further.

Serum Folate: Recommend checking your red cell folate to assess whether this is significant.

Vitamin D: Recommend supplementing 800 - 2000ui/day for 12 weeks.

MediChecks Doctor's comment: The presence of multi vitamin deficiencies raised the possibility of an absorption problem and should be discussed with your GP.

(I might as well talk to the wall, as talk to the Doc ... but where the comments are "not accepted by the Surgery", I now know that Healthchecks 'outsource' their blood tests and results should be accepted by the Medical Practice..!)

These could be responsible for the symptoms that you are experiencing.

Some of the the results are SO different from the MAY 2017 "NHS" results ~ apart from self-medicate to attempt to feel better, I'm feeling I've no other choice.

Also: GP ignored 4.4 x CRP High Sensitivity "NHS Results" which they did, and the Medichecks CRP High Sensitivity was nearly double their highest range.

HERE COMES THE "PLEASE HELP AND ADVISE FURTHER" PART:

MY HISTORY OF LOOKING INTO POSSIBILITY OF HAVING HYPOTHYROIDISM, as mentioned, were because of my mother's history ~ and, the symptoms are spookily like M.E./FIBRO.

Firstly, my Thyroid results are 'within range' ~ and nothing's going to be done about them via the NHS (an all too common a story), despite the fact that my Mother nearly died from many years of having "normal Thyroid results" (she was verging on a Hypoythyroidism Coma), when my father demanded a house call from her Doc, and fortunately a Locum Doc was sent, who'd no pre-conceived ideas about my mother (who by that time had been 'written off' as an over-anxious/nuisance patient) ~ and the Locum had her in Hospital within 1/2hr, where she remained for approx 3 months!

I've no desire to go the same way! All MediChecks found re Thyroid was that I'd FT3/rT3 ratio which was low 13.24 (Range 18.01 - 78.00) and could suggest that I'm not getting sufficient FT3 into my cells. He made it clear that I was unlikely to get any help via the NHS, given my other readings were "in range".

NHS RESULTS 23/3/17:

TSH:2.15Mu/L ~ 0.3 - 6.00

Free T412.6pmol/L ~ 9.00 - 24

Free T34.1pmol/L ~ 3.5 - 6.5

Peroxidase ABs<1.0U/mL ~ <6

(I have received no Thyroid Treatment at all, not even a small trial of meds, despite advising Doc of my late Mother's situation of 'normal range' Hypothyroidism tests, and how much damage they'd caused her!)

CRP - High Sensitivity: 44mg/L ~ 2.0 - 10.00 (4.4 times upper limit ~ MARKED by Surgery as "No requirement for further action!" (Words to that effect!)

Based on comments when I put the original NHS RESULTS on the Forum, I'd been advised that FT4 and FT3 are better IF at higher range, and the TSH of 2.15 it was too high to feel well, and that the results showed that my Thyroid was 'struggling'. I feel very far from 'well'. Despite having M.E./FIBRO, this has been the worst year EVER!

MEDICHECKS RESULTS: 28TH JULY 2017.

TSH:0.655mIU/l ~ 0.27 - 4.20

Free Thyroxine`13.9pmol/L ~ 12.00 - 22.00

TOTAL T.490.4nmol/L ~ 59.00 - 154.00

FREE T33.66pmol/L ~ 3.10 - 6.80

REVERSE T318NG/dL ~ 10.00 - 24.00

RT3 Ratio13.24 ~ 15.00 - 75.00

Peroxidase ABs11.5IU/mL ~ 0.00 - 34.00

Thyroglobulin <10IU/ml ~ 0.00 - 115.00

CRP - High Sensitivity 9.9mg/L ~ 0.00 - 5.00 (Almost double higher range) ~ MediChecks Doctor's Comments: Check urgently with GP (What? And be ignored yet again?)

For years I've had 'rib pain' but thought that was just the ME/Fibro (the pain feels like a nasty 'hug' and I've had to put extenders in the back of my bra, as and when I can wear a bra.

Sorry, I'm all over the place ~ I don't know which 'symptom' actually belongs with what 'diagnosis' (?), My spine is in agony ~ I was told (when I finally got an x-ray that I'd been asking for, for two years, that the discs in my neck were 'thinning' and would crack and I'd have a lot of pain (what, like I've had a picnic of a time over the last 29 years? :D ) ~ and two have cracked and now I've got 'old lady back' worse than my Nana had at age 96!

When I bend my neck forward, I get massive waves of pins and needles from the tips of my toes, right up to my knees. I've had dual carpal tunnel syndrome for more years than I can remember.

I've had chronic Insomnia for approx 23/24 years: I have been taking 10mg of Nitrazepam for years ~ I came off of it for 5 years, and it was then that I discovered that although it hadn't aided with sleep, it had controlled my "restless (dancing!) legs syndrome" so the Doc put me back on it, and the 10mg still works fine. My system's so screwed up that if I take 15mg, the Nitrazepam makes me more alert. (?)

This year I've had tremendous muscle wastage ~ have been more house-bound than ever with infections/ viruses ~ and have spent a lot of time in bed where I feel I can get a little more pain relief.

I have good quality pain killers, up to and including 50mg Pethidine, Lyrica and (rare, I know) Co-Proxamol. I suffer from very bad migraines, often 'cluster migraines'.

Strangely (?), I don't have any Rheumatism or any form of Arthritis.

I'd an Emergency Hysterectomy at age 38 (got a lovely Hospital acquired infection and didn't get on well with HRT, tried for 5 years then gave up and felt slightly better!). The Hysterectomy was in April 1988 and by August 1988 was told I'd to stop work immediately for 2 years, when I was diagnosed with ME/Fibro. Blood tests for ME showed high titres of Epstein-Barr (no idea why) and even more strangely Flu A, and I hadn't had flu for probably about a decade!?

I'm throwing everything into the ring here ~ as I really don't know what is relevant.

I'd best stop here, or else this will be a book!

All help / advice gratefully accepted: TIA

Barbara xx

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I FORGOT: (Brain like mince, as we say in Scotland!) :D

Diet: good ~ very fond of 'oily' fish, started taking liver again, eat chicken and am having a love affair with red meat for about the past 9 months. I'd taken a complete revulsion to all meat in late 1988 ~ couldn't eat it at all. I get my 5 a day, love my greens and fruit.

More symptoms: As my mother was diagnosed with Hypothyroidism in 1939 and went off of all medication somewhere during WW2 years, I was born to an 'untreated' Hypothyroidism Mum.

My extremities are always cold. (Nowadays, I can't tell 'when' I'm getting too cold, so Central Heating on almost every day in the year, and hot water bottle for my feet is a must.)

I've always had Low Blood Pressure ~ normally 90/60. Any other country I'd be treated for it, but it seems to be taken as a good thing by all the Docs I've ever had.

If I have a 'normal' temperature, it means I'm running a high temperature. Been like that since I was born.

I was constantly told by the Doc that my cholesterol was too high. Blood test in March 2017 it was well within range. (Oh how the Docs love the numbers these days, and not the patient's symptoms! Back to patients just being a number I guess?)

Fogging up yet again ~ maybe time I should try for sleep again. Sleeping pattern is obscene, constantly turning night into day! B xx

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90/60? I'm surprised you're not fainting. That seems extremely low. That in itself will cause fatigue.

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Oh gosh, this is an old post, but thanks for replying. My BP has been the same from birth, as is my temp (when it's normal, I'm running a temp), and other weird things. Whether that's got anything to do with my mother having untreated Thyroid when I was born, I've no idea and probably never will have!

However, before I got ill, I was exceptionally active all my life ~ and avoided all childhood illnesses apart from colds/flu's and mumps (!) ~ and didn't get measles until I was 28!

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Hi LadyBarb you certainly do have a plethora of problems most of which are way above my area of knowledge but your age and possible thyroid problems may put you at risk of developing a Vitamin B12 deficiency and your "under treated" Vitamin D is also going to make you feel a bit poorly.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

Your doctor should be treating your symptoms not just looking at the computer screen.

The BSH guidelines say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

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I'm not going to say that B12 is involved but ...

sounds like many of your symptoms have been going on for decades - in which case I would have expected the drop in serum B12 levels to be much earlier if the problem is to do with B12 absorption.

A very few people do seem to have other problems with metabolising B12* but these would be associated with high levels of other chemicals that your cells wouldn't be able to recycle (MMA and homocysteine) without affecting serum B12 levels.

*note, NOT talking about MTHFR here which actually affects metabolisation of folate but can have a knock on effect on B12.

Have you tried getting the test redone by medichecks? The discrepancies are quite dramatic and one possibility is that the sample wasn't quite right. Guessing that your GP probably isn't responsive to repeating the NHS tests and consider testing MMA as well but if you haven't asked already would suggest trying for that.

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With thanks to CliveAlive, and to you Gambit62 for your replies. I am afraid I'm not familiar with PA 'Terminology' and will have to research a bit more before I get an understanding, and I'm a bit brain dead at the moment.

I've got test kits from Blue Horizon and once I can safely to the finger prick blood test, I'm getting the Medichecks tests repeated by them, due to the massive 'drops' Medichecks results showed in B12, folate, VitD, etc..

Even my Docs 'own' NHS blood test High and Low levels weren't addressed. Completely ignored, more accurately.

One medication which did help me ~she told me could ONLY be a "Placebo" effect ~ while she knows, from her own personal experience, medications can help with more than one ailment than their original 'use'.

I hadn't even realised it was possible to have Medichecks to relook at the results I received ~ and when I get my brain together I'll be having a conversation with them. They already gave me misinformation that they, themselves, 'did everything', as I did initially query the tests results ~ they don't, they're a 'middle-man' as I've since been advised.

I also wasn't at all happy at some of the 'recommendations' made by the Medichecks Doc, as in copy/paste responses, which bore NO relation to the medical history I'd given them. Their response was farcical.

My doc is less than helpful ~ with a nearly 17 year doc/patient good relationship, she's totally changed ~ I asked her about 'the change' and she basically said (A) "What relationship?" Well ... doc/patient relationship, what else??? And (B) What change? She said there was no 'change' she new of ~ even when I clarified how she was now treating me re 'relationship' and medically.

And no, she's not open to doing more blood testing ~ the only thing that would change that is, I think, confirmation of the drastic falls that the Medichecks tests showed up.

I've previously given her, in writing, comprehensive 'facts' of what I'm going through. Zilch. Even the starred Highs and Lows on the NHS blood tests she'd done were totally ignored.

The other Doc in the Practice, apart from being totally patronising, put me on 3 meds some 17 years ago, which took me well over a year to recover from ~ and getting an appointment with the Senior Partner (possibly due to other dissatisfied patients) takes weeks to get. He does actually 'listen and hear' when it's possible to get him. But he's not my 'registered doctor'.

It doesn't help that I live in a very rural area and medical services are limited. I asked the District Nurse who works for another small Medical Practice, and what the Docs there were like. She sighed and said, they're basically just as bad! (That's the short and polite version!). Frying pan to fire, comes to mind, re any change.

I'll see what the Blue Horizon results show ~ and if they're any nearer to what the NHS results were, and if they are, I'll have a conversation with Medichecks.

Will let you know what happens with the Blue Horizon Blood Tests, but I'm fast coming to the conclusion that self-medication is the answer now! :(

Again, thanks for your help, and of course, the 'links'. Barbara xx

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clivealive - response from Barbara above

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