Could it be PA? Please help!

[GreenTealSeal_]

Could this be Pernicious Anemia?

Hello, I’m new here but have been feeling pretty awful for a long time now. it was suggested I should consider PA and wondered if anyone could advise?

I’ll try to keep it brief:

I’ve been feeling unwell for YEARS - with mainly anemia type symptoms (details below)

-crushing fatigue/weakness/unsteadiness

-impaired concentration/mental clarity

-poor appetite

-deathly pale/grey complexion

-depression/misery/very low mood (so unlike me!)

-symptoms worsen with exertion

-pain in shins/lower legs

-intermittent toe numbness but there is a spot on the side of my left toe where there is no sensation anymore.

Most of the time I look and feel so ill its like I’m about 90 years old.

My Tsh has also gone abnormally high in recent years (but is up and down like a yo-yo) ft4 and ft3 levels always normal, no thyroid antibodies and I actually find thyroid medication significantly worsens my symptoms.

I have had low iron on and off since my teens but do not have periods so not sure of the cause of persistently low iron/ferritin.

My bloods are at the bottom of this post and a more recent set in the picture.

I feel some improvement with supps but my levels plummet quickly without continual supplementation and symptoms return. I find this hard to manage. My b12 levels were 1000+ in august ‘24 and I was advised to stop supplementing but by Jan this year they had plummeted to 241 as well as lowish vit d/folate and rubbish ferritin levels…I feel shocking.

Should I be considering pernicious anemia?

How do I go about getting tested properly please?

Not sure if relevant but I also have a postive ANA (1/80-1/160 speckled), polycystic ovaries(but not typical type of PCOS) never had periods, intermittently raised TSH. HSCrp is often raised. Negative for coeliac. Rheumatologist has ruled out lupus etc.

Sorry for the barrage of info and hope you can help me! Thank you for reading!

GreenTealSeal

Bloods:

Serum vitamin B12: 386 ng/L

Normal range: 197 to 771

Serum folate: 8.0 ug/L

Normal range: 3 to 20

Serum 25-HO vit D3 level: 41

Normal range: 50 to 150

Serum ferritin: 30 ug/L

Normal range: 13 to 150

-

FBC:

Total white cell count: 6.81 10^9/L

Normal range: 4 to 11

Red blood cell (RBC)

count: 4.18 10^12/L

Normal range: 3.8 to 5.8

Haemoglobin estimation: 124 g/L

Normal range: 115 to 155

Haematocrit: 0.372 L/L

Normal range:0.37 to 0.47

Mean corpusc.

haemoglobin(MCH): 29.7 pg

Normal range: 25 to 34

Mean corpusc. Hb. conc. (MCHC): 333 g/L

Normal range:304 to 360

Mean corpuscular volume (MCV): 89.0 fL

Normal range: 77 to 100

Red blood cell distribut width: 12.1 %

Normal range: 11 to 15

Platelet count: 271 10^9/L

Normal range:150 to 450

Mean platelet volume: 11.2 fL

Normal range: 9.1 to 12.8

[Nackapan]

Have you seen by a haematologist or neurologist?

Or opinions of your blood results .

Any diagnosis at all even if the wrong one?

Thete is no robust test for Pernicious Anaemia.

The Intrinsic factor antibody test and the parietal cell antibody tests are used .

There are many absorbtion issues .

Is your diet okay ?

On any medication?

My daughter of similar age to you also had.

Very low ferritin of 8

" " folate of 2

HB okay

Finally hef B12 tested was 82pg/ml(200-900)

Later found to have Polycystic ovaries, POTS ( caused by undiagnosed b12 deficiency)

And Ehlers Danlos ( heds)

Thus was after years of illness and investigations and wring diagnosis of fibromyalgia, taken down the MH route ect.

Rheumatology

Neurology

Pain clinics ect

A hospital specialist can do more tests.

Look at the NICE guidelines March 2024.

There's more on there about diagnosis 'tools'

What goes terribly wrong is noone seems to join the dots among the specialists as they don't communicate with each other .

The 'breakthrough ' of getting to the root of the problem for my daughter was being seen by a General medical consultant in A+ E .

Who took an interest in joining the dots and collating medical information.

This was on the occasion she was in A+E when my daughter had a ?L3 spinal herniation seen on a MRI scan.

In alot of pain.

She was persuaded by this doctor to have diazipam.

This calmed down her whole nervous system.

It was short term as highly addictive.

But certainly has its place .

Her autonomic system affected .

She also gained an incredible amount of weight .

Megobalastic Anaemia also missed .

I mention all of this for you to carry on getting every test you can.

Keep good notes for yourself and keep copies of blood results and any letters .

Yes it's highly possible you have PA or an absorbtion problem with your seesaw B12 levels.

Often other deficiencies like iron ferritin vitamin D folate accompany pA or an other absorbtiin problem.

Push push for more referrals.

Your 'norm' is not Normal.

Hope you get to see the right consultant eventually to help you .

Bloods never show the whole picture.

At one point my bloods 'looked fine '

I was bed bound and not fine.

They are a tool in diagnosis .

Hope you find Thus forum useful to pave the way .

[GreenTealSeal_ in reply to Nackapan]

Hello thank you for your reply!

All drs say my bloods are normal.

I’ve seen a rheumatologist and neurologist and now endocrinologist… neuro said all normal/ these issues tend to pass by themselves. Did no tests aside from normal brain MRI and my plantar response is ‘indeterminate’. He was incredibly sexist and rude.

My diet is good and has always been healthy. I have always been a healthy weight but more on the low end of normal.

As for medications…

I take the combined contraceptive pill as without I do not produce enough progesterone or estrogen and never have periods. I end up with horrific menopause and severe mental health issues without hormones so stopping that isn’t possible at the moment unfortunately.

I also am trying to restart thyroid medication as I’m struggling without it.

How do you test for Megoblastic anemia?

Is it still possible to have PA even if my b12 levels increase with supplements?

I’m not sure which other dr I can ask about this now and everyone says ‘normal’ no action required…

I wonder a bit if I should try to speak with someone privately and see if they will trial b12 injections?🤔

[Orchard33]

I think your ferritin is low which indicates low iron stores. Although you may not be clinically anaemic you have the symptoms so could well be iron deficient. I, too, have struggled with what I now believe was ironD all my adult life. Since taking haem iron for over six months those anaemia-like symptoms have progressively lessened. I also self- inject with B12 every 3 days. I no longer attribute symptoms to B12D or ironD. They are both part of the same PA syndrome.

[GreenTealSeal_ in reply to Orchard33]

Hello! Thanks for your reply!

My ferritin is always low unless I’m supplementing which surely can’t be normal!?

Glad you are doing better on haem iron! I’ve just started haem too! I can’t handle the other types as the side effects are so awful.

Do you have PA too?

I’m wondering if it’s worth me trying b12 injections just to see if it will help!!

So low iron and low b12 are common in PA?

[Orchard33 in reply to GreenTealSeal_]

Low iron and low B12 seem to be fellow traveller's in PA, although others tend towards peripheral neuropathy rather than ironD. I'm sure some have both. But there is very little research into the syndrome so we have to create our own hypotheses from experience!I find chemical iron impossible to take. It gives me immediate stomach/gut horrors. And I think I've been ironD episodically throughout my adult life. I don't think my body could cope with menstruation and it finally caught up with me after menopause, along with B12D. The haematologist I see every six months (privately) agreed with me on that.

There might well be benefit in SI B12 and there would be no harm in trialling it for six months, along with haem iron.

[MorningMist]

Your vitamin d levels are low. The first result you post is just in range but the 2nd one at 41 is below range. You mention pain in shins which is a symptom of d deficiency as are aches and pains in general and low depressed mood. My initial d3 level was low but in range and I often had shin/ leg pain which gradually disappeared with supplementation.

Lack of sunshine exposure and reduced vitamin d metabolism in the skin are associated with seasonal winter depression.

Your ferritin levels are just in range at 34 and 30 but aren’t optimal. Iron absorption and storage is a complex issue though.

It’s remarkable that doctors dismiss individual just in range results as normal and don’t see the significance of a pattern of low levels. Our medical tick box mentality unfortunately.

Everyone needs to carefully look at their blood results because doctors only address blatant issues, they don’t bother about more subtle trends which for some people could be significant.

At the very least a supplement of d3/k2 of 1-2000 iu per day would be a good place to start to get your levels higher in range. And then optimise your dietary intake of iron and folate rich food, all of these work in conjunction with b12.

[GreenTealSeal_ in reply to MorningMist]

Hello, thank you for your reply!

My first results in the pic are my most recent set.

I’ve started 3000vitd3 with vit K so hopeful that will help a bit!

I eat plenty of folate/b12/iron filled foods but my levels don’t really stay in range or go up unless I supplement…which can’t be normal surely!?

I’ve also found that supplementing b12 in the last week has caused a worsening of low iron symptoms. I’ve developed horrendous restless legs!!

Is it possible that this could be PA?

Sorry for all the questions I’m new to all this and still trying to get my head around it all!

[Hockey_player]

On problem: if you are supplementing B12, it is hard to see what is going on with your B12. You could stop supplementing for a few months. It may work better to try every other day B12 injections for a few weeks to see if your symptoms improve. If they do, I think I would just assume you have PA. One problem is that the test for PA has a high false negative rate so testing for it might not give you any reliable information.

[GreenTealSeal_ in reply to Hockey_player]

Hello thanks for reply!

Both of the blood test sets I have shared here are minimum 3 months with out any b12 supplements or b complex.

I’d be hesitant to stop as I struggle a lot without the supps and find it affects my thyroid and the medication for that.

[Hockey_player]

Dd your doctor look into why your CRP was high?

[GreenTealSeal_ in reply to Hockey_player]

No they didn’t. I presume it’s because I have thyroid issues but am unable to tolerate any thyroid medications at the moment.

What sort of things should they be looking into for raised hsCRP? Nhs do CRP and this is always normal.

[Hockey_player in reply to GreenTealSeal_]

I am not a doctor. I just noticed you had 5.26 and normal is < 1. Maybe google it and also ask your doctor about it?

[GreenTealSeal_ in reply to Hockey_player]

Ok thanks, I know. I just tend to find that these forums are more informative than most drs who disregard bloods even when they’re abnormal! I will ask them but I doubt they’ll care sadly.

[GreenTealSeal_ in reply to Hockey_player]

quick google suggests it can be thyroid dysfunction, low iron or PCOS…all of which I have.

[Sleepybunny]

Hi,

Just seen your thread...welcome to the forum.

Some links I post may have details that could be upsetting to read.

Have you considered joining PAS (Pernicious Anaemia Society)?

pernicious-anaemia-society....

You don't need a PA diagnosis to join. PAS membership is separate to membership of this forum.

Lots of useful leaflets on their website.

pernicious-anaemia-society....

There are PAS support groups in UK. Most meet online.

pernicious-anaemia-society....

I think non members can attend some meetings but check with PAS.

Might be useful info in my replies on this thread.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I'm not medically trained.

[GreenTealSeal_ in reply to Sleepybunny]

Thank you so much, I’ll have a read through everything today!