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I want to talk about the ossible underdiagnosis of things like Vit D/B12/Folate deficiency and anaemia

(26 Posts)
Katymac Sun 05-Jul-15 12:14:18

I was diagnosed in 94 with CFS, 95 with IBS and more recently with FM

I've spent 20 years feeling rough at best and downright ill at times - during my pregnancy I felt amazing.

I the last year I have been diagnosed with B12 deficiency, Zinc deficiency, Folate deficiency & Vit D deficiency; possibly due to absorption issues

Taking supplements have not made me 'better' I am not cured much to my disgust however, so far, my worst is less bad and my normal is better than it was.

If you look back on my blood tests 5/6 years I was borderline B12 deficiency even then not below the range but very low within it

There are loads of websites which 'suggest' the range is a bit arbitrary particularly for B12 and the GP had to be pressured into testing me for Vit D deficiency.

For me absorption issues 'taking a good multivitamin' wouldn't work - but there are loads of people (often women) who are tired all the time are these tests regularly done for them, is it the first set of test that are done or are they sent away with well maybe you're a bit depressed

I dunno - I just feel somehow something is a bit wrong

gingeroots Sun 05-Jul-15 15:10:44

Inclined to agree that deficiencies are not always dealt with adequately and that people can feel really ill and have their whole life style diminished by this .

And advice not given about how absorption can be affected by other supplements and common food stuffs .

Nerving myself to ask for a copy of my next blood tests rather than sitting there wondering what " oh your ferritin levels have come up again " .
Which apart from not being told what level they are and were ,actually meant " Oh ,your ferritin levels have been flagged up as below normal again ."

I have to take more control of my health ,being included in the outcome of blood tests would help me I think .

coffeeisnectar Sun 05-Jul-15 15:17:28

I was diagnosed with folate anaemia a few weeks ago. I've been complaining of feeling exhausted for so long but gp said was a side effect of meds I take and I've had my meds changed so much but not made a difference. I'm now on pregablin, previously gabapentin and tramadol. I'm taking folic acid but still tired all the time. I was given a lecture about my diet but my diet is Really good, lots of folic acid rich foods so I'm wondering if it's absorption issues more than intake.

It was only seeing someone different that bloods were tested in the first place. I think doctors get fed up with seeing me!

AlpacaMyBags Sun 05-Jul-15 15:37:48

Message withdrawn at poster's request.

tinkerbellvspredator Sun 05-Jul-15 15:42:35

Have you been tested for coeliac?

tinkerbellvspredator Sun 05-Jul-15 15:44:27

That comment goes for all of the posters on this thread!

Katymac Sun 05-Jul-15 16:02:57

4 blood tests & 2 biopsies all negative - but thanks the others may need to consider it

ChuffinAda Sun 05-Jul-15 17:05:28

My gp flatly refuses to test my b12 because I'm not anaemic. Despite me showing signs of advanced b12 deficiency. Anyone know where I can get tested privately?

Outwith Sun 05-Jul-15 17:18:39

I was wondering about this recently - I've suffered from depression etc., but surely routine blood tests should be done as a first line test in cases of suspected depression? If not then, when do GPs do routine blood tests?

ChuffinAda Sun 05-Jul-15 17:25:59

I think it's an expensive test. My GP works on the basis of if you're not anaemic they won't check b12 levels

LostMyBaubles Sun 05-Jul-15 17:34:28

Whats cfs?
Ive had b12 deficiency, vitd deficient, folate anaemia and iron deficiency.
Im only 23. B12 is better after having the injections folate is better but still vit d problems.
Also have kidney problems

ChuffinAda Sun 05-Jul-15 17:39:40

Chronic fatigue syndrome

LashesandLipstick Sun 05-Jul-15 18:42:43

I've felt lethargic and tired, headachy, and generally unwell on and off for years. Only recently found out I'm B12 deficient and borderline iron deficient. I feel quite upset no one noticed and I've endured numerous tests and been told it's all in my head for years.

mulberrybag Sun 05-Jul-15 18:50:13

chuffinada Google genova diagnostics UK for private blood testing

EvaBee Sun 05-Jul-15 19:02:03

I think it's sad that GPs, generally, in the UK are not interested in this subject. In Australia there are affordable diagnostic clinics everywhere and for a small cost you can have all your blood tests done to ascertain your levels.

I even had my Homocysteine levels checked - I imagine my GP is going to shake his head when I mention that here.

Kamden Sun 05-Jul-15 21:43:17

How interesting that you posted this; I have just been diagnosed with low vitamin B12, low vitamin D and iron deficiency anaemia. My haemoglobin has been dropping for a while. The worrying thing is that, due to my chronic health problems, I have been having 4 weekly bloods for nearly a decade. Therefore, my bloods are looked at by both a GP and a specialist nurse! Yet, they failed to call me in for a dropping haemoglobin until I turned up in tears, stating that I knew something was wrong, outside of my usual health problems. As someone on strong immunosuppressant medication, I am far from impressed. I was fobbed off with "it's part of your condition". I must admit that I am really unhappy with all those involved in my care.

Katymac Sun 05-Jul-15 21:51:14

Kamden - another failing is that if you have one diagnosed condition you can't possibly develop a second third

It took 5 yrs of appts to get the FM diagnosed <sigh>

ihearttc Sun 19-Jul-15 13:26:48

I was finally diagnosed with Pernicious Anaemia 2 years ago and have 3 monthly B12 injections.

However it took nearly 2 years before that of going backwards and forwards to the GP to get diagnosed. The originally told me it was because of my diet and I saw a dietition. They then decided to start me on B12 injections but didn't give me the loading dose so I never got my B12 to proper levels. Have more tests done and then one of the better GP's in the practice looked at my results and decided I had PA.

The B12 injections have really helped-I can function now wheres I wasn't before but I still feel awful. Its got to the point where I don't know what feeling well is like anymore. A few months ago I started getting joint pain and my ankles swelled up. GP did all blood tests and referred me to Rheumatology and I had my appointment last week. They have decided that Ive got Rheumatoid Arthritis despite all my blood tests being completely normal. Yes my joints hurt but I ache all over, Im exhausted, my memory isn't great, I have insomnia and my head feels "foggy" all the time. I asked consultant to test my Vitamin D levels and she refused so I got GP to agree to test them and Im waiting for the results now.

Im convinced something else is going on. I don't entirely understand Pernicious Anaemia but what I do understand is that its a lack of instrinic factor in my body which means I can't absorb B12. I wonder if that then means I don't absorb vitamin d as well?

Katymac Sun 19-Jul-15 21:42:32

As I understand it; the 12 weekly injection won't increase your levels enough if you are B12 deficient rather than have PA; as they (appear to be) different conditions

nicky2512 Sun 19-Jul-15 21:52:19

DD (age 13) has diagnosis of chronic fatigue syndrome. Also on and off iron tablets as her iron fluctuates a lot (possible absorption problem as her diet is great). After blood tests in March she was put on 9000 strength vit D tablets for 8 weeks as her level was very low. Her thyroid is borderline low so no treatment. She always looks very pale and unwell with dark under her eyes. She was also extremely constipated but now using movicol daily. I cant help thinking that there is some deficiency causing her problems. Will ask if her B12 is checked as i'm not sure. Paediatrician sees her regularly but just keeps repeating blood tests.

MurielWoods Mon 20-Jul-15 08:57:14

place marking to come back and read later x

PoshPenny Mon 20-Jul-15 09:32:19

Yes I think that a lot of patients symptoms are dismissed if the results come back "in range". Even if only by 1. Got to the point I got very anxious about persisting in going back because I felt unwell, to be dismissed yet again.

Katymac Sat 25-Jul-15 13:24:21

Just bumping this as I feel strongly about it

gingeroots Sat 25-Jul-15 19:29:22

Good example here

GP says my results are fine - her hair is falling out FFS

MrsTweedie rather knowledgeably to my ear thinks they're not .

sanfairyanne Sat 25-Jul-15 21:14:54

the 'normal' blood test result thing is so predictable! it is awful how symptoms are ignored

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