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Help with blood results

Rachel20 profile image
22 Replies

Hi everyone.I hope you are well.Just needed hel with some blood results

TSH (satisfactory) 3.79 0.55-4.7 B12 (satisfactory) 268 211. -911

Vitamin d (low) 31 >49

Ferretin (satisfactory) 17 10 - 291

Folate low 3.8 >5.40

Serum ATL level (satisfactory) 10 10 - 49

Cortisol 788 (high) 788 145 - 619

GFR calculated abbreviated MDRD 89 44 - 71

Have more results as have had a fbc...Had tsh but they don't bother taking t4 or t3.Had many more blood results as had fbc but put most relevant up.Have been told have folate problem.am on folic acid now.Was also told to buy vitamin d tablets.Told all other results are fine apart from cortisol.Havent had appointment yet.Yet all satisfactory are on the low side.Thank you

Symptoms i have had

Extreme fatigue

Tinnitus

Weakness in arms and legs

Blurred vision

Dizziness

Restless legs

Forgetfullness

Anemia

Macroytosis

Pale in face look unwell

Palpitations feeling heart beating irregularly

Gastointestinal problems. Bloating gas constipation and upset stomach

Feeling faint and lightheaded

Have folate deficiency vit d deficiency .Was told ferretin was fine at 17 but just been told nice guidelines that if you are under 30 you have deficiency

I hope you can help

Thank you

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Rachel20
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22 Replies
Nackapan profile image
Nackapan

With vit D . Mine dropped to 21 . I was prescribed s loading dose. Grassroots Web. Has useful info

Ask Gp for a high initial vit D dose

I buy my own now and take 2-3000 out a day and still only just in range.

Ferritin at 29 I had symptons shaking / jittery ,heart palpitations.

Must not be looked at in isolation though. Full iron panel.

Put on your list of Q for gp.

I was prescribed iron after asking about ferritin !!

TSH varies with age and time of day I think .

Mine the same and deemed normal.

The thyroid forum can advise as I think around 2-3 🤔

Full testing includes antibody test, t3 t4 ( NHS do test but only if referred to a hospital specalist)

You can have an 'in range b12 ' and it not reaching cell level.

Functional b12 def.

B12 usually supplemented before folate .

Intrinsic factor antibody test may be helpful ant this stage

My daughter cortisol levels were high years ago and was tested fir all sorts including Addisons . (Missed b12 and folate and macrocytic anaemia though)

It's a matter of elimination .

The symptoms all very familiar to me .

Trouble is they cross over with so many other things

Get an appointment ASAP

I know how difficult this is.

Perhaps start ringing at 0800 for an 'emergency ' appt.

Seems only way to get one here.

No bookable ones done.

Hope you get a consult very soon.

Rachel20 profile image
Rachel20 in reply to Nackapan

Yes was just told to buy my own vit d tablets.I have an appointment on Wed and want to be prepared as are saying results are satisfactory yet I don't think they all are.Apart from saying vit d and folate is low.Think they only want.to see me about my cortisol as it says so on the form.I think I am deficient in much more am feeling dreadful and want to feel listened to when i go in.A dietician pointed out how low my b12 was which prompted me to get a pri t out of results.So glad she did.Have battled this for well over a year and have just been ignored now I feel absolutely dreadful.Thank.you so much for all your help.Will have a good read of all this.Its hard to know how to put it in words when your In appointment xxx

Sleepybunny profile image
Sleepybunny

Hi Rachel20,

Many of the symptoms you list are consistent with B12 deficiency.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

UK guidance on B12 deficiency suggests that people who are symptomatic for B12 deficiency should be treated even if serum B12 is normal range.

From personal experience, I can tell you it is possible to have severe b12 deficiency symptoms with a normal range serum B12 result.

Blog post about being symptomatic for B12 deficiency with normal range serum B12.

b12deficiency.info/your-ser...

You might want to look into "Functional B12 deficiency" mentioned by Nackapan .

MMA and homocysteine are two blood tests that can help to diagnose functional B12 deficiency.

How to write letters to GP about B12 deficiency

b12deficiency.info/writing-...

I think Point 1 and Point 5 are particularly relevant to you.

In a person with both B12 deficiency and folate deficiency, B12 treatment should be started first.

Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.

NICE (National Institute of Health and Care Excellence) guidance - B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Have you been tested for PA (Pernicious Anaemia) and Coeliac disease?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

A negative result in PA tests does not rule out PA...it's possible to have Antibody Negative PA.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

If doctors won't test you for PA, it's possible to get tested privately in UK.

Guidelines below suggest that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

nice.org.uk/guidance/ng20

It's possible to get a negative result in coeliac tests and still have coeliac disease.

More info about diagnosis on Coeliac UK website.

coeliac.org.uk/information-...

Have you asked to be referred to the following specialists?

neurologist

haematologist

gastro enterologist

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE when to refer B12 deficient patient

cks.nice.org.uk/topics/anae...

When it comes to b12 deficiency, seeing a specialist is no guarantee of better treatment or better understanding. It seems to be a very neglected area of medicine to me.

Wrong ideas about B12 deficiency

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Some UK forum members turn to treating themselves as a last resort.

Some get B12 injections from private GPs and beauty salons, some try high dose oral tablets but these don't work for everyone and some try self injection.

I'm not a health professional.

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

Ferritin at 17 does not sound fine to me (I'm not medically trained).

Have you asked your GP if taking a iron supplement with the RDA (Recommended Daily Amount) would be helpful?

I suggest also asking your local pharmacist and mention your symptoms if you do.

NICE guidelines - iron deficiency

cks.nice.org.uk/topics/anae...

Have you had a full set of iron tests?

labtestsonline.org.uk/tests...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Take at least a week to sort through the info so it's not overwhelming.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

Rachel20 profile image
Rachel20 in reply to Sleepybunny

thank you so much.I will have good look at all that.I don't think my ferretin is OK either or my b12 results.Have not had a whole set of iron tests atall.Talking to my local pahrmacist is a great idea,thank you.At the end of my results it says comments Hypochromasia 0.4 % <6.00% not sure what the ranges mean

Sleepybunny profile image
Sleepybunny in reply to Rachel20

I think it means that your result was 0.4% and the reference range of <6.00% means that anything below 6% is considered normal range. I'm not a scientist so may have misunderstood.

Rachel20 profile image
Rachel20 in reply to Sleepybunny

oh yes that makes sense xx

Rachel20 profile image
Rachel20 in reply to Sleepybunny

Thank you so much for all this info.I was tested for ceoliac disease a year and a half ago.Have not seen a gastroenterologist although have been going to gps for 3yrs about gastro issues.So much so that I changed gps.Have not been sent to any specialists as of yet.But have a gp appointment on Wednesday and want to know what to say when I get there.As blood results say satisfactory when I don't think they are.A dietician pointed out my b12 results which prompted me to get a print out of my results.Ferretin is very low.So I have vit d deficiency...folate deficiency and in my opinion am low in b12 and ferretin.My cortisol is sky high so think that is the only reason they want to see me.Thank you ao much again for info xx t

Sleepybunny profile image
Sleepybunny in reply to Rachel20

If you're not happy with your appointment, you could follow it up by writing a letter to GP and maybe copied to practice manager. Putting things in writing to GP mean that it should be copied into your medical records and is proof that the issue has been raised.

Always keep copies of any letters etc as these could be useful in case there is a need for a formal complaint.

See letter writing link in one of my other replies.

I used to put requests for referral to specialists into a short letter to GP along with evidence of why I needed the referral eg symptoms list/quotes from UK health documents etc.

Cherylclaire profile image
CherylclaireForum Support

Don't know your units of measurement, Rachel20 , but my GP wanted ferritin above 60 ug/L (despite lab range being 13-150 ug/L) and my Oral medicine consultant prefers above 80 ug/L.

This because my gums continued to bleed and hair falling out after B12 injections started - so GP thought possibly ferritin or folate. Both of these were lowish but the lowest my ferritin got was about 35 and folate 5.5 - so not below range, either of them. Still it took a couple of years to keep stable at better levels.

Oral medicine consultant is treating angular cheilitis (sore, split corners of mouth) and looking for cause for burning tongue. Both of these I believe are symptoms of B12 deficiency. Angular cheilitis managed by using nipple cream, burning tongue a daily on/off problem, which I may be stuck with.

So much better than I was at the start of B12 deficiency.

MMA test (methylmalonic acid) can be used as a useful indicator if B12 borderline but symptomatic, or where a secondary indicator required. MMA can build up in the bloodstream if unable to link up with B12 - either because of lack of B12, inadequacy or due to a functional problem - and this can reduce or restrict the amount of B12 reaching cell/tissue level. If MMA results are raised, renal problems and SIBO can be ruled out as causes by testing, and B12 deficiency left by elimination of the others.

Nackapan is right - full iron panel needs requesting. GP face-to-face appointment would help - if possible.

This may all take some time to sort out, but the symptoms are indicating B12 deficiency still a possibility. No need to wait until out of range, when symptoms and low levels of ferritin, folate, vitamin D etc all tally up, and will be seen as familiar to many here.

Rachel20 profile image
Rachel20 in reply to Cherylclaire

So sorry u are going through all that.Glad you are feeling slightly better.I feel absolutely dreadful and just want it to be taken into account.Have learnt here ferretin should be over 30.A dietician pointed out how low my b12 was.Am concerned now though as I have been taking folic acid for 3 weeks already.Just needed some help in speaking to the gp about all this xx thank you

Sleepybunny profile image
Sleepybunny in reply to Rachel20

"have been taking folic acid for 3 weeks already"

BNF link about folic acid and treatment for folate deficiency

bnf.nice.org.uk/drugs/folic...

Cautions section in above link says folic acid should never be given on its own for PA or other megaloblastic anaemias caused by B12 deficiency.

In megaloblastic anaemias, red blood cells are enlarged.

If GP won't test you for PA (Pernicious Anaemia), have you considered having a private test for PA?

If interested, search online for "intrinsic factor antibody test pernicious anaemia uk"

There is a UK high street chain of chemists that offer it online.

NHS Gps may not accept private blood test results but a significant result may persuade them to order same test on NHS.

A negative result in PA test does not rule out PA but some UK GPs may not realise this.

See diagnostic flowchart below from BSH Cobalamin and Folate guidelines

stichtingb12tekort.nl/engli...

See also BSH Cobalamin and Folate guidelines

Detailed and aimed at researchers and health professionals.

b-s-h.org.uk/guidelines/gui...

NHS link about B12 deficiency and folate deficiency (easy to read)

nhs.uk/conditions/vitamin-b...

Your ferritin level is not far up the normal range. Other iron results unknown.

You have confirmed folate deficiency.

Your symptoms are consistent with B12 deficiency.

To be fair to GPs, understanding blood test results can be complex in someone with all three deficiencies.

Folate deficiency and B12 deficiency can both lead to macrocytosis (enlarged red blood cells).

Iron deficiency can lead to microcytosis (small red blood cells).

A person with B12 deficiency (and/or folate deficiency) with iron deficiency may appear to have normal sized red blood cells on Full Blood Count (FBC) as effects of iron deficiency may mask effects of B12 (and/or folate deficiency).

If you have time, may be useful to include results for FBC on this thread. If you do, take care to remove any details that could reveal your identity.

Links about Full Blood Count

patient.info/treatment-medi...

labtestsonline.org.uk/tests...

Do you have older serum B12 tests you can compare your current results with?

A drop in levels may be significant even if results are still within normal range.

Link about Macrocytosis (aimed at health professionals)

May have some details that could be upsetting.

patient.info/doctor/macrocy...

Cherylclaire profile image
CherylclaireForum Support in reply to Rachel20

I was very lucky - my B12 was found to be 196 ng/L , so with a lab range of 197 - 771 ng/L, injections started straight away. That was in 2016.

My GP told me that you can have symptoms with ferritin level below 60.

I wish you luck with your GP . Let us know how you get on.

Rachel20 profile image
Rachel20 in reply to Cherylclaire

Thank you Cheryl.So glad you.were just in range..i think the problem i had was after blood results came in i was just rang and told i needed to buy vit d tablets and the i had a folte deficiency and my tablets were at the chemist.Didnt have a chance to get appointment before that so just started taking tablets.Didnt get a chance to go through all my symptoms.Dont think I should if taken folic acid tests with these b12 symptoms.Especially tingling in feet.I have had that for a year now So hope I haven't done any damage.Will definitely mention nice cerretin levels.thank you again x

phoenix80 profile image
phoenix80

Ferritin of below 30 is classed as deficient in the NICE guidelines, the range they use on the blood tests is crazy! Definitely query that and ask about supplementing. Have they tested your B12 levels?

Rachel20 profile image
Rachel20 in reply to phoenix80

Yes why do they use ranges in blood tests that are not within NICE guidelines.Only learnt from someone here that the guidelines have to be above 30.Just told all results fine.Yes had B12 results mine were 268 and the ranges are 211 - 911. Just want to be prepared for my appointment on Wednesday. As all I think they are concerned with is my cortisol x thank you

phoenix80 profile image
phoenix80 in reply to Rachel20

Yes it's crazy isn't it! My ferritin has been low for years and only picked it up when I got a copy of my results and queried it with the GP. Just seen you have macrocytosis as well, did they highlight that to you or is that something you've picked up yourself too? My MCV / MCH have been high for a few years but always within "range". It's frustrating isn't it, hope you get somewhere on Wednesday, good luck :)

Rachel20 profile image
Rachel20 in reply to phoenix80

It just says hypochromasia at the bottom under comments then say 0.4 % >6.00%..havent got a clue really.Thank goodness we looked at reults ourselves.Thank you.so much x

B12life profile image
B12life

well I can't speak for iron or anything else but your b12 level is LOW despite being in range. Find a doc willing to give you injections. B12 Injections are harmless unless you have a kidney or liver problem.

As sleepy bunny mentioned, your symptoms coincide with b12 deficiency.

B12 comes from meat. Are you veggitarian by chance? That can lead to deficiency, which means you need I jections to get the level up, then remain on oral supplements. But if you eat meat regularly, as in pretty much daily, then you may have a problem metabolizing b12.

If you wait longer, the b12 will only keep getting lower and the neurological damage can be permanent. This will be mentioned in this doc:

ncbi.nlm.nih.gov/pmc/articl...

which also mentions that you can be on the lower end of the range and still be deficient! I was 190 and bed ridden. Now, with 2 years of every other day injections I am back on my feet. It's been a slow recovery.

if the doc ignores the facts laid out in that doc, find one who will listen and give you injections.

and get them to train you how to self Inject so you can do it yourself. But don't necessarily mention you are going to do it daily or frequently or they might unjustifiably get nervous. I was lucky to find a doctor who believed me and gave me frequent injections but 95% of the other ones freaked out saying I didn't need them. B12 deficiency is so misunderstood by the medical community.

Follow the links sleepy bunny gave as well and stay in touch. Ask any questions. There are no dumb or bothersome questions here.

Sleepybunny profile image
Sleepybunny

Links to show, send to or quote from if GP won't treat B12 deficiency symptoms because you are normal range.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

Look at the right hand side of the diagnostic flowchart below, it explains when PA can be diagnosed with normal range serum B12 results and mentions Antibody Negative PA. Bottom right of flowchart suggests that doctors should consider continuing treatment in people who have shown clinical improvement (meaning their symptoms have improved) even if tests such as MMA and Homocysteine are normal range.

Quotes from NHS article on B12 deficiency and Folate deficiency

"Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood."

"It's also important for your symptoms to be taken into account when a diagnosis is made.

Some people can have symptoms and also seem to have normal levels of these vitamins."

nhs.uk/conditions/vitamin-b...

Quotes from NICE CKS guidance on B12 deficiency and Folate deficiency

"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."

"Vitamin B12 level — interpret the results of the serum cobalamin test taking into account clinical symptoms......."

See Point 4 in next link

b12deficiency.info/what-to-...

See Point 5 in link below

b12deficiency.info/writing-...

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Next article may be a good one to pass to GP.

One of the best B12 deficiency articles I've come across.

B12 article from Mayo Clinic in US (aimed at researchers and health professionals)

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

"Have not seen a gastroenterologist although have been going to gps for 3yrs about gastro issues."

That's awful....I had IBS type symptoms for years but there was no interest from GPs.

Changes in bowel habits etc should be taken very seriously....

Maybe ask GP if it's possible you could have gastritis.

If you see a gastrologist, probably worth mentioning any concerns about possible PA or Coeliac disease.

The pattern and type of gastritis can give a clue as to what has caused it.

One type AMAG (Auto immune metaplastic atrophic gastritis is associated with PA (Pernicious Anaemia). Coeliac disease can also cause gastritis.

If GP won't refer you to gastrologist, maybe you could show them this link.

cks.nice.org.uk/topics/anae...

Some GPs don't like assertive patients so be prepared for GP/patient relationship to come under strain.

Have you managed to find your local B12 deficiency guidelines?

I usually say that people should be careful with their privacy. Threads from HU can appear on NHS website.

If you don't mind people knowing your ICB or Health Board, forum members might be able to help you find them.

To change your thread to a more private setting

1) Go to original post, click More then click Edit.

2) Scroll down post to Share, click Community Only then Post.

I hope you'll let the forum know how you get on.

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

This link mentions a change in ferritin range from 15mcg to 30mcg on April 2021.

cks.nice.org.uk/topics/anae...

NICE guidelines Iron deficiency anaemia says

"In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency."

This quote is on the Investigations page

cks.nice.org.uk/topics/anae...

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