Confused any advice : HiI have had low... - Pernicious Anaemi...

Pernicious Anaemia Society

31,969 members23,118 posts

Confused any advice

HannahTayl28 profile image
12 Replies

HiI have had low iron for over a year in January 2024 I was experiencing horrific bone pain after I move around actively.

I have lost 9 stone nearly in 2 years by doing very low calorie diet on and off.

When I was 9 stone heavier I had no pain or problems.

When I had blood tests in January I had full blood count ,every routine blood test the NHS give in uk,the test came back OK apart from

Low vitamin D

Low Iron

Low Selenium

My hair has thinned 50 percent ,I'm very pale and my chest hurts when I'm stressed which is alot as I'm currently studying a qualification for 3 years so if I fail it's alot of pressure on me etc.

I have even given no help from my doctor at all,he said you would need to go private if you want investigate as nhs guidelines don't permit this.

I've been taking 4000 up vitamin D a day,but I've got low vitamin d2 and d3 along with the low iron and Selenium and I've read online if your low on one thing it just won't work.

I don't even though if I'm taking vitamin d2 or d3 ,it just says vitamin D

I'm very lost and I feel as if I've got a underlying problem as I have unexplained bruising for 2 years now but the bruises are only on my legs no where else.

They are the size of my hand and appear from no where

My aunt has myeloma blood cancer and my mum has lupus.I know people say it don't relate to families however there seems to be a issue with bloods.

Can anyone help me in any direction, I would love to go private for deeper blood tests or anything however it will be expensive, I'm looking to have a specific test that maybe could solve this ?

I have read about Vitamin D IV and Selenium IV

I'm worried as don't want this to develop into an illness untreated as its been 3 months now and my hair is falling out even more.

I told the doctor and he said your hair looks fine

I'm 28 and lost 9 stone if that's make any difference,I'm worried about infertility too.

Any advice tablets ,tests or anything would help.

Thank you

Written by
HannahTayl28 profile image
HannahTayl28
To view profiles and participate in discussions please or .
Read more about...
12 Replies
HannahTayl28 profile image
HannahTayl28

I've now started a iron diet for the next month eating liver and spinach etc.The only supplement I am taking is the vitamin d 4000 ui

I think I need something for iron and I've just brought selenium supplements

Jillymo profile image
Jillymo in reply to HannahTayl28

Hi HannahTay128,

Your Dr sounds totally incompetent and unsympathetic.

9 stone was a lot of wieght to loose, I cant help wonder if whilst counting calories your diet was insuffucient.

Has your Dr checked your thyroid ? ? ?

Was your vit B12 checked if it was what was the level ?

When taking iron take a 'gentle iron' that does not constipate.

What was your Folate level ?

You have autoimmune illness within the family which the Dr has dismissed. The bruising needs to be taken seriously. If I were you I would take photo's of these large bruises and keep a record of your symptoms. Are you able to see another Dr within the pactice ? Mind you it's not easy to see any Dr these days !

Selenium is needed for healthy function but with caution too much can cause toxicity ----- What are the symptoms of selenium deficiency.

Selenium Deficiency Symptoms & Causes

Selenium levels imbalance could function as a triggering factor for an organic oxidative stress, inducing mitochondrial membrane apoptosis, which leads to hair cycle impairment and telogen effluvium.

Check the amount of selenium your taking and also check other vitaimins your taking do not contain it so that you take the correct dose. You dont want to overdose and become toxic but do need to correct the deficiency. Vit E plays an important roll in selenium levels.

I am not medically trained and sure others will advise.

I have just come across this via googling..........

Is selenium a blood thinner?

Because of its blood-thinning effects, people should avoid taking selenium supplements at least 2 weeks before surgical procedures. Taking selenium close to the time of surgery may lead to excessive bleeding.

I wonder if this is why you are bruising ? Keep an eye on your selenium level and make sure your taking the correct amount.

What tests were you hoping to get ? If you dont want to put on here you can private message me.

Technoid profile image
Technoid in reply to HannahTayl28

Hi and welcome :)

Spinach is not a great iron source as most of the iron in the spinach is bound with oxalates. Lentils and cooked tomato will work better. Onions, Garlic and any beta-carotene source in the same meal will also improve non-heme iron absorption.

I've never heard of a Selenium IV but its sounds pretty dangerous - the Selenium upper limit is not that high.

Loupharm profile image
Loupharm

I suggest you consult with a nutritional therapist (these are registered professionals who can give you good advice on vitamins and supplements). they will be able to look at your symptoms as well as the test results and advise what to try . Hope this helps

Technoid profile image
Technoid in reply to Loupharm

"Nutritional therapists are not eligible to register with either UK Voluntary Register of Nutritionists (UKVRN) or the Health & Care Professions Council (HCPC).

Nutritional therapists use treatments such as high dose vitamins, detox, and food avoidance for which there is little robust scientific evidence.

They work on the belief that the body has underlying nutritional and biochemical imbalances that lead to poor health including mental health problems.

They do not use the evidence in a robust fashion and advice is most often based on personal opinion or belief."

"Dietitians are the only nutrition professionals to be regulated by law"

"Only those registered with the statutory regulator, the Health & Care Professions Council (HCPC) can use the title of Dietitian/Registered Dietitian (RD)."

bda.uk.com/about-dietetics/...

Loupharm profile image
Loupharm in reply to Technoid

Thanks Technoid for flagging the importance of checking out any professional group

HCPC protects some professional groups that have “protected titles” - these tend to be groups that work in the NHS. Dietitians are the only professional group that have a “protected title” for nutrition. Most dietitians tend to work in the NHS. The NHS sadly does not allow prescription of many vitamins, minerals and supplements. And also sadly does not provide enough dietitians (having worked in the NHS for 30years this was often one of the smallest departments in a hospital!)- as a society we have undervalued the importance of good nutrition for years!

For nutrition professionals that work outside the NHS like nutritionists, nutritional therapists etc (also counsellors, therapists etc etc) you can check out whether they are registered with the professional standards authority

professionalstandards.org.u...

And this will tell you if they are on the CNHC accredited register

I’d look for one that has a Masters in Nutritional Therapy and is a member of BANT bant.org.uk

Hope that is helpful 😊

Technoid profile image
Technoid in reply to Loupharm

Plenty of registered dietitians work outside the NHS, several hundred are listed here: bda.uk.com/find-a-dietitian...

In general the NHS is likely to prescribe vitamins and/or minerals in the case of a confirmed deficiency. I am not here to blanket defend the NHS and for sure there will be situations like a B12 deficiency where a deficiency is difficult to confirm and thus getting a prescription to resolve a deficiency could be more difficult. I am very familiar with the incompetence and/or ignorance of some medical professionals - I am here on this forum via their actions.

The preventative power of good nutrition is definitely undervalued by many in the medical profession but I think the opposite extreme is also flawed - the idea that "food is medicine" and "orthomolecular medicine" for example.

To quote from the British Dietitians Association page again:

"Nutritional therapists are not eligible to register with either UK Voluntary Register of Nutritionists (UKVRN) or the Health & Care Professions Council (HCPC). Nutritional therapists are able to register with the Complementary and Natural Healthcare Council though this is not compulsory.

Who are they regulated and quality assured by?

Voluntary regulation is possible but not compulsory, through the Complementary and Natural Healthcare Council (CNHC). This is self-regulated rather than independently regulated."

"Dietitians are the only nutrition professionals to be regulated by law"

from bda.uk.com/about-dietetics/...

To try and equivalence dietitians and nutritional therapists as equally capable and qualified professionals as you seem to be doing is incorrect and misleading - Dietitians are regulated by law, must register with a professional, independently regulated body and must meet certain educational standards including ongoing education to remain current. Nutritional Therapists do not need to register, do not need to meet the same educational standards and are not independently regulated.

Although there will be exceptions, the advice you receive from a nutritional therapist is much less likely to be professional and evidence-based in comparison to that which you would receive from a registered dietitian.

Orchard33 profile image
Orchard33

I know it's financially painful and daunting, but I suggest you collect print outs of all your blood tests going as far back as you can and tell your GP that you want a private referral to a haematologist at your nearest private hospital. The haematologists there will have NHS day jobs. You could ask for it in the NHS but it will take a lot longer. As a self-payer your haematologist will give an opinion and then write a letter telling your GP what needs to happen next from the NHS.

Sleepybunny profile image
Sleepybunny

Hi Hannah,

Some of the symptoms you describe eg bruising, hair loss can be found on lists of B12 deficiency symptoms.

Do you have any neurological symptoms eg brain fog, tingling, pins and needles, insect crawling sensation, balance problems, memory problems, migraine, twitching muscles, incontinence....there are many others besides these.

Symptoms list - B12 deficiency

b12info.com/signs-and-sympt...

pernicious-anaemia-society....

theb12society.com/signs-and...

Next list is from US website

b12awareness.org/cobalamin-...

Next list is from Dutch website

b12-institute.nl/en/symptom...

Has your GP tested your serum B12 (also known as total B12) and Active B12 (also known as holotranscobalamin)?

It's possible for people to have severe B12 deficiency symptons with normal range serum B12. See blog post below.

b12info.com/your-serum-b12-...

It's common for forum members to report folate, iron and Vit D deficiencies as well as B12 deficiency.

Also common for people here to report thyroid issues. You could put any thyroid results on Thyroid UK forum on HU.

"I had full blood count"

Might be helpful to type out your FBC results.

When you have time, look up this UK document "NICE B12 deficiency guideline".

It was published on March 6th 2024.

nice.org.uk/guidance/ng239

More info in these threads

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

Useful links - tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

Apologies for short reply, I have an arm injury that limits my typing.

More B12 info in pinned forum posts.

I'm not medically trained.

palmier profile image
palmier

Any chance you could ask for a second opinion? Sounds as if your doctor isn't taking you seriously.

Gen89 profile image
Gen89

Hi firstly well done on your weight loss. It’s a major achievement to loose nine stone. Vitamin D deficiency is usually easily rectified by taking tablets but what strength you take depends on how low your levels are. You don’t need an iv. However your doctor needs to advise you on that. The same goes for low iron levels. Hopefully being young you will have no problem absorbing iron from iron tablets but too much iron is dangerous so again your GP needs to advise you. It’s possible that hsving dieted for so long you have become deficient in iron because of this or are you mainly vegetarian? If it’s not due to lack of iron in your diet then your Gp may want to be thinking about other causes such as do you have very heavy periods or are you loosing blood from your bowel.again your Gp should be concerned about this. Maybe when your results say your levels are low they aren’t low enough for the doctor to be concerned. I don’t know anything about selenium but with all vitamin supplements you have to be careful about overdosing. The NHS page on vitamins and minerals advises on the doses you can take so maybe Google that. Having said all that it is remiss of your GP not to be advising you on how much vit d and iron to take. I would either go back to see him or go to another Gp in your practice and ask what you should be taking. Good luck 😊

Sleepybunny profile image
Sleepybunny

"he said you would need to go private if you want investigate as nhs guidelines don't permit this"

When you have the time and energy, maybe you could find the NHS guidelines GP was referring to. The ICB (Integrated Care Board) or Health Board in your area may have its own guidelines.

I always check for myself when GPs say something like this...sometimes what they say can be wrong.

NICE (National Institute of Health and Care Excellence) may have published relevant guidelines.

These may be of interest ....

"NICE guidelines Anaemia - Iron deficiency"

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

It's possible to have iron deficiency without being anaemic. This is sometimes called iron depletion.

Next article about iron deficiency without anaemia is aimed at doctors. It may contain upsetting details.

patient.info/doctor/non-ana...

Has the GP tested you for any auto-immune conditions eg PA (Pernicious Anaemia), coeliac disease and others?

I've read that anaemia can be common in some auto-immune conditions.

NICE guidelines for Coeliac disease suggest people should be tested if they have unexplained B12, folate or iron deficiency.

Diagnosis of coeliac disease

coeliac.org.uk/information-...

I have read articles that suggest lupus may occur in families.

Lupus UK website has info on this.

lupusuk.org.uk/

I'm not a health professional.

You may also like...

New here any advice?

concerned and I'm not sure she'd agree to further tests as I'm 'within range' As I'm new here I'm...

So confused with different advice about suppliments.

folic acid. I take a b complex multi vitamin and also heme iron tablets 80 mg daily, as my ferritin...

Confused & could do with some advice please...

ferritin & folate have dropped down even more since my last blood test that I had taken last year &...

Any advice on caring for someone with b12 deficiency?

to post here - I don't have b12 deficiency/PA myself, but am a carer for my 98 year-old Grandmother...

new here - does any of this sound like PA?

everything I should, lost over 2 stone so I know what I am doing food wise. I got my blood tests...