Help with blood test interpretation for my daughter

[Sneedle]

Hello Everyone,

I'm new here and asking for my 18 year old daughter. I've come over from the Thyroid UK forum at their suggestion.

She's been quite unwell for about 3-4 years slowly getting worse. We've been stuck with unhelpful medics both private and NHS who have not got anywhere with her symptoms which started when she was about 14, about a year after her periods started. She was completely healthy as a child.

Main symptoms are debilitating fatigue, dizziness, twitchy spastic movements, episodes which seem seizure like where her visions goes black and she gets an electric thump in her chest, poor sleep. She is prescribed injections for chronic migraine which do help.

She has had inconclusive 48 hr EEG - one neurologist diagnosed epileptic activity but not epilepsy (?), her current one doesn't think it is epilepsy as it doesn't 'fit the pattern' although generalised spike and wave activity could be seen on EEG but wasn't related to any episodes. To compound it all, she was prescribed Keppra for epilepsy which did reduce the episodes but gave her headaches so she stopped taking it.

She has irregular, heavy painful menstruation with sugar cravings. Mini pill and implant made her feel even more exhausted and caused spotting and wooziness.

She has had clear MRI and CT scans. She tries to avoid gluten as she's sensitive and also is largely dairy free.

She is awaiting an autism assessment but this was not a feature of her childhood.

We are working through the Thyroid UK forum supplement protocol and she has been supplementing for 3 months. The first bloods she had done in March were pre-supplementation.

Questions

Could she have Pernicious Anemia? How to find out?

Is there a difference between this and B12 Deficiency?

Could anyone look at her Iron tests and comment on the under range TIBC and UIBC results? Or anything else iron related.

How much methyl B12 should she be taking? She has been on Liposomal B Complex with 500mcg B12 for nearly three months. She has various methylation-related gene mutations. She doesn't have haemochromatosis genes. Tests were done without biotin interference, and she stopped B12 two weeks before since Medichecks website states to do this.

I have a recent raft of GP NHS blood tests which I can upload in a separate message as I don't seem to be able to upload more than 1 picture in this message.

Well this is a start, thank you so much for reading and any help you can give.

Cheers!

[Nackapan]

I would push for more specialist appointments.Have

POTS

Ehlers Danlos

HEDs

Affect autonomic function.

Been investigated / ruled out ?

It's a matter of ruling things out.

So many symptoms overlap.

I had years snd years trying to help one of my daughters .

Starting menstruation as the menopause gives huge hormonal changes that I believe to be a trigger for many many women.

Migraines often start then.

PA is sn autoimmune disease.

The Intrinsic factor antibody test if positive is accurate if not on b12 injections.

However only diagnoses about 5o% of those with PA .

So not a great diagnostic test .

On b12 injections if alot of b12 in your bloodstream a false positives possible id possible.

So a minefield .

Even Martyn Hoopef had 3 IFAB tests before a positive.

Look up Functional b12 deficiency .

Further tests for that

I'm assuming hef diet includes lots of b12 and shes not vegan.?

Dietary b12 deficiency only a small % .

Absorbtion problems .

Gastro investigation.

Neurologist sounds lije she's seen .

Can always see another.

All have different takes on findings

Cardiologist.

The trouble is they don't confer.. to get the big picture.

It was a general medicine consultant in A and E that started all the tests again and admitted my daughter into hospital.

With an untrained medical eye her bloods don't show much to give such extreme symptoms.

Iron varies from person to person as to what they function on.

Blood loss ftom menstruation can fluctuate ferritin and HB levels .

But replenished by food intake for most.

Even after childbirth women replenish stores.

So if gastro have found no bleeds.

ingestion of enough iron or an absorbtion problem???

Just ides to get you thinking in different ways.

Keep a log.

Change gps or see every one in the practice.

I ended through all 6 and locums to get one to listen.

Can't comment on Thyroid results but I'm sure the thyroid forum have.

Read Read Read.

Lots of info on Thr Pernivious anaemia society Web.

Pots UK

Ehlers Danlos a very varied scale of symtome.

HEDs can be internal ax well as external.

Adrenal problems.

I hope you get some answers.

Did she have a b12 serum test before supplements and the same test after.?

Would show if same lab and same serum b12 test if absorbing orally.

A gp surgery tends to use same lab.

Then if values okay ,can she actuslly use it?

Functional b12 deficiency .

Perhaps one of her consultants woukd trial b12 injections if nothing else found ???

All very complicated .

As for what dose of oral b12 ,it really depends on cause .

Then

If you can absorb it ,are you able to use it.?

If diet is lacking in enough b12 an oral tablet will suffice.

I can identify with the frustration of no answers so far.

[Sneedle in reply to Nackapan]

Thank you Nackapan for your lengthy reply with wide ranging thoughts.I'll be digesting it for a while!

In the meantime I'm posting my daughter's recent nhs gp blood results in case anything jumps out at you or anyone else here.

Should I repost it in a new message? Also I can't seem to upload more than one photo per message, so there is another page to come.

Thanks again.

[Nackapan in reply to Sneedle]

I wouid discuss ferritin result with her and her with Gp. Iron had tk be looked at all together but often yo csn get symptoms under 50 .

I did!

My daughters was 9 snd ignored ??

Can indicate start of anaemia.

Low ferritin symptoms also mimic thyroid symptoms .

I wouid start a new post for more replies.

Just do seperate posts

I don't know how to do it differently either.

[Sneedle in reply to Nackapan]

When you say Ferritin under 50, do you mean in range of 13-150? My daughter's is 66 at the moment on that Medichecks range (but NHS test says 29 in range of 15-300).

She will be asking GP about her ferritin. They are likely to say 'just take some iron supplements' as the same GP told me that in a similar scenario for myself. However I keep reading over on Thyroid UK not to do that in case of iron overload. And my daughter's iron is 21.5 (5.8-34.5) and HUTUK admins are saying she doesn't need extra iron because her very low in range TIBC and UIBC indicate no capacity for more iron....can't make head nor tail of it all!

[Nackapan in reply to Sneedle]

Ferritin ug/LRange ( 11-307

Told below 50ug/L can cause symptoms

[Sneedle in reply to Nackapan]

Hi Nackapan,

I'm coming back to your questions about my daughter now that we are bit further down the line.

As I've just posted in a separate message to the fourm, she had a negative IFAB yesterday and I'll be speaking to GP next Tueday hopefully to push for injections to start.

I would push for more specialist appointments.

POTS and MCAS– this has been ruled out by private specialist (no longer seeing as he concluded he couldn’t help further!?).

Ehlers Danlos – GP says in notes that she is aware EDS can present with IBS, gynaecological issues etc. but does not think a referral will be accepted. So more to do there. I know there is no specialist anywhere near us, and have a recommendation for someone in London, so in time I will look at that.

Starting menstruation, as the menopause gives huge hormonal changes that I believe to be a trigger for many many women. – I completely agree. It’s all gone pear shaped in the years since she started her periods.

Look up Functional b12 deficiency- I’m going to wait until injections start and see what gives, but will definitely look at this (maybe for myself!).

Further tests for that – what are the tests?

Iron varies from person to person as to what they function on.

Blood loss from menstruation can fluctuate ferritin and HB levels .

She has been referred to Gynaecology for endometriosis assessment. No other referral as yet.

Did she have a b12 serum test before supplements and the same test after.?

Unfortunately no – she had a pre-supplement Serum B12 by GP (399 in 180-900ng/L) and one by Blue Horizon (381 in 145-569 pmol). But the GP has not repeated the Serum B12, so no way to tell.

Oh I’ve just seen these are different units of measurement 😊

Thank you for anything which occurs. No worries if nothing does!

[Nackapan in reply to Sneedle]

MMA and homocysteine can help diagnoseca functional deficiency. Normally by s specialist .

I've not had these tests.

[dickenspeter]

All normal apart from the iron studies which are difficult to interpret.

You are correct, low B12 can have an unexplainable affect on iron studies.

Your GP could ring the local haematologist or medical pathologist once a Full blood count, B12, folate, Glandular fever antibodies tested.

[Sneedle in reply to dickenspeter]

Hello dickenspeter,

Thanks for your reply. I see from your reply to Laundretta that you are are retired GP, so I appreciate your replying that my daughter's GP test results are normal.

Could I ask three things:

When you say I'm correct about B12 and iron, I'm not sure what you mean as I don't remember having written that? But maybe I did...

Secondly, my daughter has had full blood count, B12 active, Folate (private tests) but not Glandular Fever that I know of. Is there a particular reason you are mentioning this? I'm not aware she's had it.

What would the GP ring the haemotologist about? Sorry I'm not understanding.

And finally...! I have just seen on your reply to Laundretta that you say

It can take up to 5 years for the B12 to drop so symptoms can creep up unawares.

These can include neurological problems like mental clouding , fatigue, depression, proneness to infection, sexual wellbeing.

My daughter has been ill for the last 3-4 years with brain, fog, bad fatigue, poor memory among other things (stomach issues) . Her B12 active test was 45.2 (35.7-188 pmol/L). Her folate was 45.4 (8.83-60.8 ug/L), Vit D 150. She has been supplementing all 3 for the last 3 months.

Could there be a similar pattern here do you think?

We are investigating other causes of her symptoms, inc thyroid, but at the moment B12 is the focus. She will be going to her GP soon with this B12 result - what would be the pathwway the GP might follow in this case according to th guidlelines?

I hope you're able to improve your health with the sublingual B12, folate and iron approach.

Thanks very much for anything which occurs to you.