vit b12 Hashis : Hello, I’m still quite new to... - Thyroid UK

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vit b12 Hashis

Vizslaaddict profile image
21 Replies

Hello,

I’m still quite new to the group.

History of hypothyroid 9 years. Less well controlled symptoms last 18+months.

If I’m honest I’ve never felt the same since going through huge stress 5 years ago when my husband was having treatment for a serious illness right after I’d just had our second child.

Current symptoms - Low energy, low motivation, reduced mental function.

Diagnosed as Hashis last year with parathyroid gland enlargement being monitored.

I’ve cut out gluten, started eating whole foods and taking meds with lemon water.

I’ve lost a stone in 3 months. Feel better than I did but not quite firing on all cylinders. Sorry can’t explain it any better than that. It’s a vague feeling.

I’ve done a thyroid panel as suggested by this group. Current dose Levo is 125mcg.

CRP 0.162 (<3)

Ferritin 199 (30-180)

Folate 14.8 (>7)

Vit B12 35.7 (37.5-188)

Vit D 77.1

TSH 0.076 (0.27-4.2)

T3 4.6 (3.1-6.8)

T4 22.2 (12-22)

I’d particularly like to understand the B12 significance and if anyone has experience of this please.

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Vizslaaddict
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21 Replies
J972 profile image
J972

Hi,

Is that a serum B12 test result or active B12?

It could be that you’re not absorbing B12 due to, for example, low stomach acid. Or it could be pernicious anaemia, which is another autoimmune condition. It needs further investigation as B12 deficiency can wreak havoc.

Are you taking any other medications like PPIs or metaformin? These can deplete B12. I don’t suppose you’re veggie or vegan?

Marz profile image
Marz in reply to J972

The range suggests Active B12 test so the result is low. Around 75 would be better....

J972 profile image
J972 in reply to Marz

Agreed.

Vizslaaddict profile image
Vizslaaddict in reply to J972

Hi thanks for the input - none of the above. Taking plenty of dietary sources of B12. The medichecks doctor has suggested further blood tests so I am psyching myself up to approach my GP about this now!

J972 profile image
J972 in reply to Vizslaaddict

Definitely.

And, just like with a thyroid condition, it’s strongly advised to familiarise yourself with the diagnostic protocol for B12 deficiency; it’s not straightforward and, to make matters worse, it’s poorly understood by medics.

I’d suggest joining and posting on the Pernicious Anemia Society (PAS) forum on healthunlocked for further guidance healthunlocked.com/pasoc

Good luck.

Marz profile image
Marz

With Hashi's absorption can be poor. I inject weekly due to surgery removing the ileo-caecal valve and ascending colon.

shirlzoni profile image
shirlzoni in reply to Marz

Can you elaborate on how your surgery affects b12 absorption? I had the same surgery 10 years ago and I’m wondering if this could be a factor in my chronic fatigue. I take oral b12 but maybe that’s not enough.

Marz profile image
Marz in reply to shirlzoni

Intrinsic Factor is secreted from the Parietal Cells lining the stomach. This protects the B12 molecules as they travel from the stomach into the Duodenum and beyond. B12 is then metabolised in the Terminal Ileum - taken up by the blood supply and transported back to the liver for storage. Clever stuff.

Took me 30 years to learn the consequences of my B12 issue - fatigue being just one.

Injections could help you feel stronger ....

shirlzoni profile image
shirlzoni in reply to Marz

Thank you for explaining that, Marz! Guess the first order of business would be to get tested for b12 and go from there. Many thanks!

Marz profile image
Marz in reply to shirlzoni

Are you taking B12 on its own or in a B Complex ? If so then any results will be skewed. ALSO test Folate - Ferritin - VitD - these are tests that are NOT routine and must be requested.... Do not accept Normal/Fine/OK as they are opinions and NOT results. Do you always request copies of results to check what has been tested and what has been missed ? You are legally entitled to have printed copies.

The same tests for your hubby too as I see he has Parkinsons. Private Testing available on-line - happy to help 🌻

shirlzoni profile image
shirlzoni in reply to Marz

Thank you for your feedback. I started to answer your questions and then realized I was hijacking the OP's thread so I think I'll start a new one and I'd appreciate any insights you can give me if you happen to be on. It's good of you to help! 🙂

Marz profile image
Marz in reply to shirlzoni

My apologies to OP too 🌻

Marz profile image
Marz in reply to shirlzoni

Good idea - will look out for your new post.

SlowDragon profile image
SlowDragonAdministrator

you need testing for pernicious anaemia before starting B12 injections or B12 supplements

What vitamin supplements are you currently taking

Vitamin D could do with improvement

Mew7 profile image
Mew7

I have hashimotos. I joined the b12 wake up group on Facebook and now do my own b12 injections. I thoroughly recommend the group to give you advice, lots in the group files. I feel so much better now on regular injections. The Dr refused me tests for b12, I got them privately.I ate everything with a very good diet. I don't fully understand why, but I do believe hashimotos is linked to poor b12 absorption.

The other thing that helped me, was an autoimmune diet. I now don't eat gluten, dairy or refined sugar and I eat loads of veg, good quality grass fed meat. Sounds like you've cleaned up your diet - and I think it's different for everyone - but for me I did a full diet elimination diet to reset.

Hope you feel better soon.

Petalrugbaba profile image
Petalrugbaba

hi. Have you thought of switching to NDT as your T3 is low and T4 high. You may be a poor converter. I take NDT and Levo and that little bit of T3 in NDT has made such a huge difference to my energy level. Perhaps worth a word with your GP and a referral to an endocrinologist ?

Cornwaller profile image
Cornwaller

If you want an NHS diagnosis of b12 deficiency then don't supplement b12 before your test as the GP will then likely dismiss the possibility of b12 deficiency and PA and also refuse the b12 injections you may need,

The alternative is self treatment,

Whichever route you choose a trial of b12 shots would seem reasonable to see if your health responds.

Best wishes

SilverSavvy profile image
SilverSavvy in reply to Cornwaller

I've spent decades not being listened to about my familial B12 issues and in the end had to start taking sublingual lozenges myself as I could not absorb it in normal oral tablet form.

But the folks here are right: try hard to see if you can get them to take your possible PA seriously with the help of the society. Things have improved since I started all those years ago.

I now take BioCare B12 and folate (Methyfolguard) in liquid drop form. But if you can get the injections on the NHS you will save yourself a deal of money and also be correctly monitored ongoing. Hopefully.

Good luck

Litatamon profile image
Litatamon

These are wonderful resources for b12 deficiency/pernicious anemia, complete with medical footnotes -(Please do not have any expectations of your GP or any specialist to fully understand b12 deficiency, they make a ton of errors so educate yourself.)

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

All the best to you.

bookish profile image
bookish

Hi, sorry to hear you are having a rough time. Vit B12 is badly stress depleted (as are some other vits and minerals) and your test shows B12 is far too low. This is an active (holotc) test, whereas serum B12 will include both active and inactive forms of B12. Medichecks do a Pernicious Anaemia test of sorts,

medichecks.com/products/com...

although it doesn't include parietal cell antibodies and homocysteine which you would want, ideally. Hopefully the GP will do more tests but if not, please don't supplement until you've done them. All of the family members in my long history of PA went from a simmering undiagnosed deficiency to PA with extreme stress - usually illness or death of a loved one - so it needs attention sooner rather than later. Well done for the GF and lemon. Best wishes

FallingInReverse profile image
FallingInReverse

I know you asked about your B12, but your ferritin is high - which can mean many things, one of which could be high iron levels. High iron is toxic when not addressed.

If you haven’t gotten an iron panel, probably a good idea.

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