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Pernicious Anaemia Society

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Advice please

Pen1966 profile image
22 Replies

Advice please now getting sores on scalp

Tsh 1.42 range 0.27 to 4.2

FT4 is 21.5 rsnge 12 to 22

Ft3 is 3.9 range 3.1 to 6.8

Have been told my Vitamin d is too high at 120nmol calcuim is 2.26 ps not supplementing atm either also have no thyroid cfs and fibromyalgia and Gerd and sinutitis29/12/2022

You have a low level of haemoglobin which is also known as anaemia. Your results indicate that this is unlikely to be related to low levels of iron, vitamin B12 or folate. The best course of action is to discuss these results with your doctor. Please check test-specific details below as there may be important additional information.

HB

29/12/2022

107 g/L

You have low levels of haemoglobin. The best course of action is to see a doctor as soon as possible.

FERRITIN

29/12/2022

34 ug/L

Normal

TSAT

29/12/2022

28 %

Normal

ACTIVE B12

29/12/2022

132 pmol/L

Normal

FOLATE

29/12/2022

>20.0 iu/L

Normal

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Pen1966
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22 Replies
Nackapan profile image
Nackapan

Your ferritin in normal range .Could be higher .

I also have got a dry sensitive scalp.

J did have hair loss and blding scabs.

I have tried so many things.

Otc

T gel

Eucerin

Ginger

T tree

Niserol

Oils:

Almond

Camomile

Jojoba

Rosehip

Coconut oil

Olive oil.

Have been prescribed

Bettacap ( not used yet)

No idea why it started .

Thought initially it was because I reduced saturated fats to reduce cholesterol level.

Presently have small dry scabs .itching . No bleeding though .

I think due to nerves in my Scalp.

Always worse with a headache.

Try ant off the above for 3 consecutive days to see if any relief.

Pen1966 profile image
Pen1966 in reply toNackapan

Thank you

Pen1966 profile image
Pen1966 in reply toNackapan

I feel so poorly have had shakes bad tummy pins and needles feel sick don't want to eat so so tired dizzy can't walk far horrendous xx

Nackapan profile image
Nackapan in reply toPen1966

Sounds horribly familiar in the early days fir me.Hooe your gp will do more blood tests .

And act on your iron results once explained

Wishing you well

Pen1966 profile image
Pen1966 in reply toNackapan

Thank you x

Sleepybunny profile image
Sleepybunny

Hi,

I hope you find something that helps with the sores.

Do you have the reference ranges to go with the results?

It might help if you could see how close you are to the limits of the ref range.

What has your NHS GP said about these results?

Pen1966 profile image
Pen1966 in reply toSleepybunny

They have said nowt apart from haemoglobin and referred me for camera up bottom

Sleepybunny profile image
Sleepybunny

I'm glad you've been referred for further investigations.

I can see your Active B12 seems to be within normal range.

I can tell you from personal experience that it's possible to have severe B12 deficiency symptoms with normal range serum (total) B12.

Are your symptoms consistent with those of B12 deficiency?

See lists below.

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)

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

UK guidance on B12 deficiency suggests that people with the symptoms of B12 deficiency should be treated even if their serum (total) B12 is within range.

If your symptoms are consistent with B12 deficiency symptoms, you and your GP may find it useful to look into Functional B12 Deficiency. This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

MMA and Homocysteine blood tests may help to diagnose Functional B12 Deficiency.

A typical range for Active B12 (also known as Holotranscobalamin) would be something like 20 - 135 pmol/L.

Have you been supplementing B12?

High levels of B12 in the blood without B12 supplements or B12 injections and without eating lots of B12 rich food can sometimes be a sign of certain health conditions.

I would expect a GP to order further blood tests for a person who has high B12 without supplementing.

Might be worth getting a serum (total) B12 result as well at some point.

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.

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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

b12deficiency.info/your-ser...

Some UK B12 deficiency documents/articles

UK B12 documents

NHS article about B12 deficiency (simply written)

Functional B12 deficiency is mentioned in the section on Causes.

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

NICE CKS B12 deficiency and folate deficiency (aimed at health professionals - easy to read)

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

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper founded PAS (Pernicious Anaemia Society).

UK BNF treatment info in book is out of date.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Some GPs, specialists, health professionals in UK have wrong ideas about B12 deficiency.

My experience is that some health professionals do not know people can have severe deficiency with normal range B12 results.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

There's a lot more B12 info I can post so let me know if you want me to post more.

I'm not medically trained.

Pen1966 profile image
Pen1966 in reply toSleepybunny

Thank you my active b12 is 125

Technoid profile image
Technoid

If your 25(OH)D Vitamin D is at 120 nmol/L, then by most recommendations, you are almost dead centre of the target range and accordingly, your supplementation is likely adequate and not excessive. The usual recommended Vitamin D target is 100-150nmol/L. See image below from GrassrootsHealth, a good site for Vitamin D information. I'm not sure who is telling you your Vitamin D is too high but I would ask based on what ranges they believe that to be the case. You would have to more than double that test result before you would get anywhere close to levels of toxicity. Are they confusing ng/ml with nmol/L?

Vitamin D Range
Pen1966 profile image
Pen1966 in reply toTechnoid

Vitamin d test was done by monitor my health nhs affiliated lab

Technoid profile image
Technoid in reply toPen1966

Understood. My point was not that there is any problem with the test or the result it gave - but the advice that you received that your level is "too high" is not in line with the best available advice in terms of what are adequate target Vitamin D blood levels. By those guidelines you are neither too low nor too high but dead center of whats usually regarded as the optimal range. May I ask your usual supplementation dosage? I'm personally interested to know what dosage works best for people , although I know it cant be universally applied as there is considerable variability in dose response.

Pen1966 profile image
Pen1966 in reply toTechnoid

I'm not taking anything was taking 4000 with K2

Technoid profile image
Technoid in reply toPen1966

How long were you taking the 4,000IU? Were you taking it all the way up until the test date?

Pen1966 profile image
Pen1966 in reply toTechnoid

No I stopped 3 months before tests

Technoid profile image
Technoid in reply toPen1966

Ah! That makes sense. 4,000 IU is right at the tolerable upper limit and most people won't need that much. Your level likely dropped from something a lot higher in those 3 months. But something around 1500IU to 2500IU is often sufficient to maintain adequate D over the winter but its possible some may need a bit more or a bit less.

Pen1966 profile image
Pen1966 in reply toTechnoid

Thank you

Ones I was using
Technoid profile image
Technoid in reply toPen1966

Yep. Alternate days would probably be sufficient for those over the winter and only once or twice a week if getting some good sun. There is still no risk of toxicity if you took 4,000IU every day but it would be a lot more than necessary.

Pen1966 profile image
Pen1966 in reply toTechnoid

Font get any sun as have fibro ME so no energy and cannot walk atm

Technoid profile image
Technoid in reply toPen1966

Sorry to hear that. Then its the winter dose all year round I think!

Beware of a fibro diagnosis and push for further investigations. Fibro as a diagnosis can often be used to fob off patients who need treatment for another undiscovered condition - many B12 deficient or PA patients are diagnosed with fibromyalgia which can delay the actual B12 treatment they need. I don't have anything conclusive based on your results but advise to keep pushing, see specialists where you can etc.

As Nackapan mentioned, Ferritin is on the lower side so maybe consider a full iron panel if you can order one.

pinkypurple58 profile image
pinkypurple58

Hi Pen Polytar shampoo from the chemist works well

Pen1966 profile image
Pen1966 in reply topinkypurple58

Tried that does nothing for me x

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