Hasimotos and B12

[Jutokids]

HiWas advised to post here instead of Thyroid forum for hopefully better info.

I was diagnosed with Hasimotos October 2021.

My question revolves around B12.

At diagnosis from GP tests -

Serum vitamin B12 level 411 ng/L [187.0 - 883.0]

Serum folate level 3.9 ug/L [2.7 - 15.0]

I believe this to be total B12.

Anyway I been getting tests from medichecks roughly every 6 months and my B12 is just dropping despite taking a B complex which contains folate - 400mcg and B12 - 500mcg plus I take a separate B12 - 1mg.

Medichecks I believe is active B12 and the results are -

Folate -

5.41 ug/L - Feb 23

11.7 ug/L - July 23

B12 -

130 pmol/L (37.5 - 150) - Sept 22

69.3 pmol/L (37.5 - 150) - Feb 23

49.6 pmol/L (37.5 - 150) - July 23

Am I just not taking enough? Is this something I should be concerned about?

I still have shortness of breath and generally feel unwell but I just put that down to thyroid. My latest results are -

TSH - 0.12 mu/L (0.27 - 4.2) - July 23

T3 - 5 pmol/L (3.1 - 6.8) - July 23

T4 - 23.3 pmol/L (12-22) - July 23

I know if I go to GP and they retest thyroid they'll take away my increase I fought hard to get lol. I'm on 125mcg so maybe I should drop to 112.5mcg?

Any help grateful for. Just when I thought I was on top of everything, I don't really understand B12 lol.

Thanks

[Nackapan]

I know little about thyroid problems and symptoms.

However your b12 levels are dropping despite taking 1mg oral b12 daily

You obviously are not absorbing it .

What are your symptoms?

I realise alot overlap but hopefully you can seperate known thyroid symptoms?

My shortness of breath was caused by low ferritin levels.

Have your iron snd ferritin been tested.?

And vitamin D ?

Gps I think can only take note of blood tests they have ordered .

If your gp listens discuss your b12 dropping .

It's tricky as you are supplementing if another serum b12 test done .

Also remember even in range it does not rule out a deficiency!!

There is an Intrinsic factor antibody test.

If that's positive you have Pernicious Anaemia.

B12 injections for life.

However

This test only picks up around 50% of those with PA .

Delayed treatment for that 50% can have devastating effects.

Some have had many tests until a positive one.

I started b12 injections as first ever b12 serum test showed very low levels.

I've never had the Ifab test as nothing else found to treat.

So assumed pA or absorption problem???

Had no other condition or on any meds abd not a vegan before getting severely ill.

The menopause my trigger.

Hormones!!

So on regular B12 injections for life.

So as you can see just as complicated as thyroid problems

So your only choices are to increase oral b12.

Or stop and get a b12 test .

Or Hope for a open minded Gp as autoimmune conditions often can come together.

Look at the Tracy witty Web site

PAS website

Lots of advice.

Hope you can work it out and get relief from your symptoms.

[Jutokids in reply to Nackapan]

Thanks for the reply.I am supplementing vitamin D and levels have increased from 67 to 98 (range 50-200) in the time that B12 has dropped. Ferritin is 76ug/L (13-150). That's also the best it's been since diagnosis of hasimotos.

The symptoms still lingering are palpitations, headaches, shortness of breath, tiredness and muscle weakness but again they all overlap from me being diagnosed with a thyroid issue and I can't say they've improved at all lol.

My GP is definitely not open minded lol and it took a lot of hard work to get this far as all I was told for years was I have depression. Maybe for now I'll stop and retest and maybe if gets worse I can try to push the GP to listen.

[Gambit62 Administrator]

Hashimotos is autoimmune which means you are more likely to develop another autoimmune disorder like PA.

I'd recommend going back to your GP and showing him the active B12 tests. He may well want to recheck serum B12 levels and those should show a significant drop from the last test - they may not be below the normal range but a significant drop (>20%) will indicate an absorption problem which would mean and they should treat you for that with injections on the basis of symptoms rather than waiting for your levels to fall outside the normal range. You should also mention that the levels are falling despite using high dose supplements.

The normal range is a statistical average of where most people are okay. With many metabolites levels vary depending on time of day, when you ate etc. However, B12 levels in a given individual tend to stay quite constant at a specific level within the normal range - regulated by stores in the liver being released in bile. The mechanism for release uses the same mechanism as absorption from diet to get the B12 back into your blood stream. So, if you have an absorption problem these stores get used up and levels in the blood start to drop.

As the test is only accurate to 20% constant drops or single drops of >20% are indicative of an absorption problem and the patient is likely to be experiencing a B12 deficiency even though many others would not be experiencing symptoms at that point in the range.

These guidelines discuss the limitations of the various tests used for the diagnosis of B12 deficiency and its causes

onlinelibrary.wiley.com/doi...

You could also suggest that your GP takes a look at the area of the PAS website that is specifically aimed at helping medical professionals to improve the diagnosis and treatment of PA

pernicious-anaemia-society....

[Gambit62 Administrator in reply to Gambit62]

PS you could try upping the oral dose but to be honest it is a slow way of correcting a deficiency - and injections would be recommended if you have neurological symptoms eg pins and needles in arms and legs,

Unfortunately many of the symptoms of B12 deficiency are also symptoms of hashimotos so unravelling things can be a bit difficult.

I take about 9mg of B12 orally a day to supplement injections, but to be honest high dose oral doesn't work for everyone - seems to be about 30-40% of the population that it doesn't work for.

Personally I find PA a lot easier to self manage than hashimotos.

[Jutokids in reply to Gambit62]

Thanks for such a great reply. That makes perfect sense.

I am going to request an B12 test off the GP and go from there.

Hasimotos has been a nightmare to get under control. It's been almost 2 years and I'm only just feeling like I have my dose under control and know what I'm doing and now this lol

[jade_s]

Welcome to the forum!

If you're going for testing i would also ask for intrinsic factor (IF) and gastric parietal cell antibodies. If they are willing to test homocysteine and MMA, those are two markers of b12 deficiency.

Regarding thyroid, overmedication can sometimes feel like undermedication. So it may be worth reducing a tiny bit. But i don't want to mess with what works... I suggest following TUK's advice, they know much more about thyroid.

Hopefully sleepbunny will be around to post links. Otherwise i will do so when i'm at my computer. I always lose posts when trying to add links on my phone.

Edited to fix typos. Sorry for my bumbling today!