Newbie from thyroid forum

[Kimo90]

Hi I have Hashimotos, advised to come from Thyroid UK forum. I noticed an improvement in dizzy spells after last B12 injection. I have pins and needles, tiredness, fatigue, bone pain.

Dec 2017

Folate 3.4 (2.5 - 19.5) taking folic acid for 2 years

Ferritin 41 (30 - 400)

Vitamin D total 60.2 (50 - 75 suboptimal) taking 800iu D3 for 5 years

Vitamin B12 200 (190 - 900) B12 injections started 8 months ago

Is 3-monthly injections for B12 enough? Is folic acid once a day enough or do I need more? Is 800iu D3 strong enough? Is ferrous fumarate 210mg once a day enough?

Thanks

[Gambit62 Administrator]

large numbers of people find 3 monthly injections inadequate. If you have pins and needles then you have neurological symptoms and the recommendation is maintenance 2 monthly though even that isn't enough for large numbers of people.

You can supplement - you may get enough from very large dose oral supplements 1000mcg+, or there are nasal sprays and skin patches - but they don't work for everyone.

What dose of folate are you taking?

can't answer on the vitD or iron

[clivealive Forum Support]

Hi Kimo90 Your Hashimoto's will have increased the risk of you developing a Vitamin B12 deficiency together with symptoms you describe.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Did you have a series of "every other day" B12 injections to start with eight months ago?

The three monthly schedule is "the norm" but sadly the "one size fits all" prescribed amount does not suit everybody. If you are noticing a return of symptoms in the run up to your next injection you should go back to your doctor.

If this is the case make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

As for your other "maintenance medication" it looks to be very similar to mine. I have taken 1 – Folic Acid 400μg

, 1 – Iron Ferrous Fumarate 210mg and 1 – Colecalciferol 800 Unit 20mcg (Vit D) tablet every day for more years than I can remember.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[mistygrey]

what was your B12 reading if you don't mind me asking? I am trying to see what Low is classed as - my recent B12 result was 263

[KimberinUS]

B12 at 200 is extremely low since you have been getting injections. This might indicate the b12 they are injecting is dropping out during the normal everyday recycling of b12 our body does.

In healthy folks b12 which is stored in the liver, gets cycled into the system and will be largely reabsorbed in the illium meaning only 2.4 to 6 mcg is needed daily between use and very small loss.

It does not look like that is your case. It looks like your b12 is just dropping out meaning you dont have any intrensic factor present in your illium to reabsorb it. This does not mean you will have intrensic factor antibodies but you could.

A possibility is that you have h pylori, which produces ammonia which lowers stomach acid and can cause hypochloridia which causes absorbtion issues. You can have have h pylori without stomach pain. I did.

H pylori causes damage to the stomach cells and that is where intrensic factor is produced. Please get tested if only to rule it out.