Clueless and looking for advice!

[KTEO]

Hi, I was recommended to post here from the thyroid uk group. I did a medichecks test last week, and my vitamin levels were as follows. I have also included previous results from 2022 that the GP took.

Vit D (50-250 normal range)

01/04/22. 31nmol

15/07/22. 42nmol

29/02/24. 55.1nmol

Ferritin (30-180 normal range)

25/03/22. 26ug

29/02/24. 15.9ug

Folate (7-35 normal range)

29/02/24. 6.4nmol

B12 (37.5-188 normal range)

29/02/24. 50.1pmol

Mean Cell HB (27-32 normal range)

15/03/22. 26.3

Mean cell HB concentrate ( 310-360 normal range)

15/03/22. 331

I have a telephone GP appointment on the 18th March and looking for advice of what I should be discussing, whether I should be pushing for further tests or medication.

Female, 34, generally feel rotten all the time and have done for years now. I’m vegetarian (was not by choice - had hyperemesis in both pregnancies and meat still knocks me sick) but generally have a good, balanced diet in. Also have been prescribed iron tablets in the past and struggle to absorb them- they give me unpleasant bowel issues. Have been taking 2000ug of b12 in the form of methylcobalamin which I’ve been told is perhaps not the best supplement to take. Reluctant to take anything right now too in case the GP wants to repeat any bloods.

Any advice or information much appreciated.

[Nackapan]

Your b12 is 'In range' but there could still be a problem if not getting to cell level Was it the first ever test ?

Not familiar with the measurement .

Was it private active B12 test ?

We're you taking any b12 oral supplements before that test ?

I ask as if in lower range and taking supplements it points to an absorbtion problem rather than your diet needs topping up with a supplement .

B12 does plummet 3-4 m after giving birth .

Iron you are aware you have to watch.

If absorbing oral b12 supplements methylcobalabin although deemed most natural form gives most side effects to some . Especially in injection delivery.

Cyanocobalamin appears not to.

Hydroxcobalamin the favoured type used in Injections by the NHS

Only from reading on here and friends.

I never got to absorb enough from a Tablet to know.

Do ask Gp for a IFAB test before any further b12 treatment.

It picks up around 50% of those with Pernicious Anaemia .

There are many symptoms .

Perhaps look at the symptom list which includes:

Vertigo

Fatigue

Brain fog

Migraines

Numb / painful hands and feet

Digestive issues

Low stomach acid

Bowel changes

Vision problems

Clumsiness

Leaden legs

Body aches

Tinnitus

As you can see overlap with many other conditions.

Many causes .

You are wise to stop supplements before Gp appointment.

Bound to want tests.

Iron supplements I've tolerated are:

Spartone 5mg

Solgar gentle iron 20mg

Ferrous fumarate 210( only 1 every other day !)for a period .

Floradix

Vitamin C helps with iron absorbtion from food .

Hope you get some answers and Gp consult goes well.

Give 5 worst symptoms and how it's changed day to day activities

[KTEO in reply to Nackapan]

Hi, thanks for all your advice. With regards to iron, I’ve been taking 2x sachets of Spatone in OJ for about 5 years. I do have heavy periods as well but really struggle with the ferrous fumarate (I don’t seem to absorb any and it comes out in a very unpleasant way which I won’t put you off your breakfast by saying!

So I was actually taking the B12 supplements within the two weeks before the private test (I stopped 2/3 days before when I realised I wasn’t supposed to be taking for a couple of weeks pre test).

My youngest is now 4 1/2 so shouldn’t be any postpartum issues. I do have many of the symptoms you listed.

Think I’ll call the docs in 10mins and see if a different GP can see me sooner than 18th, so fed up of feeling crap!

Thanks so much for all your advice, really appreciate it!

[Orchard33]

Your ferritin is low and significantly below the minimum level and it's fallen over two years. Consider a ferritin infusion, either NHS (unlikely) or pay privately. It's expensive but has been well worth it for me. My GP ignored my request some weeks ago. I didn't have the energy to fight at that time. I had taken oral supplements for nine months with no effect.

[KTEO in reply to Orchard33]

Hi, thanks for your reply. I’m thinking of calling this morning and trying to get an earlier GP appointment than the 18th as not sure I can wait just to be told they won’t do anything. Glad the infusion has been worth it for you, that’s reassuring. Thanks again!

[bookish]

Hi, as you are struggling with iron absorption it would be worth getting your GP to check for coeliac (assuming that you are eating a reasonably gluten-heavy diet, no point if already GF). Sometimes low iron that will not resolve with supplementation can be the first (or only) sign of a gluten disorder. May be a non-coeliac gluten disorder of course, but all that NHS will check for is coeliac, so try that first.

As you had already been taking B12, your result will have been skewed and you are unlikely to have been off for long enough to get a reasonably representative test. Some of the blood markers start to resolve quite quickly and that will distort the picture. This looks like an active (holotc) B12 test (Medichecks usually is) which the NHS will probably not do so you will not be able to compare it with their serum test (which includes active and inactive forms). Given that you were supplementing this is not very high. Did you have nitrous oxide with your children? If you were already a bit low, then had nitrous and are meat-avoiding you might not have managed to take in enough to offset the inactivation of your B12 that the nitrous might have caused. Your folate is also low especially given a vegetarian diet. Don't supplement folate/folic until you've had more testing and got the B12 sorted, as you could make thing worse. You always introduce B12 first then folate if there is any chance at all of a B12 deficiency (and as there is no test to prove that there is not a deficiency, safer to do it like that!). (Were you taking any B9(folate/folic)?)

Hope you manage to get an earlier appointment but make sure that you tell the GP that you were supplementing (and if it improved your symptoms, and if you are still having symptoms.) Many think that B12 in blood equals B12 in cells doing its job and this is not the case.

[KTEO in reply to bookish]

Hi, thanks for your reply and for all the info. I’ve had a couple of tests for celiac in the past (last was 2022) which were negative, I’ve also been gluten free for a while in the past but felt no better for it.

I had an emergency section with my first and a planned section with my second. They were only 13 months apart too so not much time for my body to recover in between and I was particularly anaemic when pregnant with no2. I did have some nitrous oxide with no1, while they were examining me for induction and while they were putting my epidural in. Not a huge amount and was in 2018.

I have pushed and managed to get a face to face GP appointment on Thursday. Not holding my breath they’ll be any use from past experiences, but if anything, it means I can start supplementing sooner if they take more bloods rather than having to wait another two weeks.

I have many symptoms but the fatigue is so debilitating and feels so unfair on my children.

[bookish in reply to KTEO]

Hi, if you got no improvement with GF then maybe that is not part of your problem. Although it can help with calming inflammation and autoimmunity and may take a while. I did get a benefit but also found that I needed to be totally grain free. As you say, two pregnancies close together and anaemia has given your body quite a hammering. I use lemon or lime juice and apple cider vinegar for low stomach acid as betaine Hcl was too much for me. I also got huge benefit from methyl(tetrahydro)folate although I don't take a large amount. Most are fine with folic acid but some need the extra methyl groups. Magnesium may be useful to you and plenty of vit C to help with iron absorption. Presumably you've had advice from the thyroid group on other tests or treatment if those results looked off. Best of luck on Thursday.

[KTEO in reply to bookish]

Thanks again for your advice. I had a skin flare up around 12 years and went gluten and dairy free for a couple of years but didn’t seem to help anything unfortunately. I will definitely look in to the low stomach acid and will get hold of the type of folate you’ve recommended ready to take after my appt on Thurs. Already take magnesium as a cofactor for my vitamin D but may up my C intake! I did get some advice from the thyroid uk group. So much going on right now to contend with, I just want to feel better! Really appreciate your responses and advice

[prillyb12]

When I increased my folate supplements, I felt remarkably better. Yours is low. In your position I'd be taking 1,000 mcg of methyl folate and see how you feel. I was told that this was the most absorbable form. About getting sick from eating meat, could this be due to low stomach acid? How are you with other proteins, like dairy or fish? If I didn't supplement with betaine Hcl with every protein meal, I'd be a total mess. Look up symptoms of low stomach acid. Doctors don't catch this. We have to be our own detectives. Good luck.

[KTEO in reply to prillyb12]

Thank you for the advice. I’ve managed to bring my GP appt forward to Thursday so hoping to start supplementing this soon. Going off meat was down to the hyperemesis in my pregnancies - I went off a lot of things, including going into certain rooms, looking at particular colours, watching certain tv shows etc. I was basically bed bound as any movement made me vomit and I think a lot of mental association is still with me from that, including with meat. It’s just the sight and smell of it that knocks me sick! I’ve not actually attempted to stomach it again and don’t think I’ll ever be able to. I don’t like meat replacements either as they are too much ‘meat like’. I’m unfortunately allergic to seafood too! I do have a fair bit of dairy though. The low stomach acid has been mentioned to me before and certainly seems like a possibility. I haven’t heard of using Betaine Hcl but will look into this. Thank you so much for your reply