low folate and low b12. Need advice

[1123ayoung]

hi all.

I was recommended to come over here as you guys Are experts.

I posted on the thyroid forum.

So I have hashimoto disease and recently my blood work has shown low folate and my b12 was at 202 ( this was 2 months ago)

My gp prescribed me 5mg of folic acid and re done bloods last week.

my folate levels have came back up but my b12 is now 192.

They are saying the guidelines are that my b12 needs to be 180 or lower before they can treat. Even though I’ve been back and forth to doctors and even hospital with symptoms.

I have put a complaint in and dr is willing to see me today.

I have wrote my symptoms down but is there anything else I should say? Any help would be greatly appreciated

X

[Nackapan]

Tell them your diet.Tell then b12 dropping

Tell them a short list of worst symptoms.

Tell them worried about neurological damage.

B12 is normally treated before folate.

Could be masking b12 def.

Medics know this.

Stress the neuro symptoms.

'Normso' levels differ for everyone to function.

B12 deficiency can still occur with normal levels.

Not getting to cell level

Functional b12 deficiency.

Look through sleepy bunnies posts for links.

Mention autoimmune diseases

Mention PAS

Mention IFA test

Hooe it goes well

[1123ayoung in reply to Nackapan]

Hi. Thank you. They are wanting to do more bloods and send poo samples away. They are prescribing me more folic acid. Should I take more or not?

They aren’t willing to treat b12 just now

Blood results

[Nackapan in reply to 1123ayoung]

They usually test your folate level after a short high dose.

Glad investigations are continuing .

On any health forum

We cannot advice but csn give you questions to ask.

What to read uo on.

Our experiences.

Hope things improve

[jade_s]

I would push for active B12, MMA, homocysteine, and intrinsic factor antibodies and gastric parietal cell antibody tests. A full blood count can also be helpful, as MCV, MCH, MCHC, & RDW can be skewed in B12D, but not always. Edited to add: supplementing folic acid may have corrected any issues with the blood count, so it might be meaningless now. They should not have started folic acid without investigating b12D further, as it can mask the b12 deficiency and cause neurological decline! They should know this, it's common medical knowledge & the warnings are printed everywhere including likely on your folic acid's leaflet.

Medichecks has a panel that includes some of these tests, you can get it privately.

I can't read your screenshot, can you post a higher resolution image?

Your B12 levels are dire and they need to start treatment asap.

Don't take anything containing b12 as it can skew tests: b complex, multivitamin, energy drinks, and i'd even avoid b12 fortified foods in an effort to push it below their arbitrary level of 180.

All else fails, you can start self-injecting.

[jade_s in reply to jade_s]

Here's the medichecks panel but goodness it's pricey! medichecks.com/products/com...

[1123ayoung in reply to jade_s]

Is this one clearer? It’s on a print out of paper I’ve took a pic of. You can zoom in xx

Blood work

[helvella in reply to 1123ayoung]

It is beautifully clear - but you've managed to crop the column headings - making it difficult to see which results were on which date.

[1123ayoung in reply to helvella]

Omg if I had brains I’d be dangerous lol xx

Results x

[jade_s in reply to 1123ayoung]

😂😂😂 been there done that 😆😉

I think you already got some good advice on the thyroid forum re: thyroid, cholesterol, liver.

Sodium also looks a bit low though potassium is ok. Do you have low cortisol symptoms?

Hba1c is starting to go up, though still fine. I'd keep an eye on it *but* it could be misleading if your RBCs are distorted, so a CBC or FBC will be useful, except, taking folate may have erased any distortions.

B12 obviously low. And dropping. Extrapolating from those 2 results, wait 4 months and your b12 may fall low enough to treat as long as you stay off anything with b12 . But really... 🙄 ... it's just useless hoop-jumping.

I don't see anything else that changes my thoughts above. I would also personally stop folic acid, if i were you, until you get b12 sorted. Push for the antibody testing, though as mentioned often here, someone with PA will still negative on the IF test about 50% of the time.

[1123ayoung in reply to jade_s]

I just had to Google what that is lol I do definitely have the muscle weakness and feeling tired all the time. I get that feeling of low blood pressure when I bend down or get up but the other symptoms I’ve read like darkening of skin etc no not that I’ve noticed.

The dr has gave me another 2 months supply of the folic acid but after what everyone has said on here and even the dr agreeing with me today that the folic acid can mask b12 deficiency and also the fact it’s sitting as high now I’ve decided to stop it. I just hope I don’t feel even worse. I’d say the only thing that’s got better since being on it is that my mouth isn’t full of ulcers anymore .

I think the dr is most concerned about my bowels. She’s going to run more bloods , waiting to hear back from endocrinologist and also referred me to hospital for an endoscopy so I guess she is looking into everything for me. This has been going on since around march that I’ve felt awful and looks like it’s more waiting game but least I’m going in the right direction .. I hope lol! Xx

[jade_s in reply to 1123ayoung]

Your folate levels should last you a few weeks at least, especially since there's no b12 around to use it up. Mouth ulcers - yes a well known symptom of f.a. deficiency! Glad it helped! I also hope you don't feel too bad off of it. On the other hand blood tests shouldn't take too long to run.

If the dr is up for more testing you could get a fasting, as early as possible in the morning, serum cortisol test. Unfortunately all of these symptoms in low thyroid, AI, & b12d seem to overlap quite a bit in their early stages. Fixing b12d could very well help both thyroid & adrenals and retention of various vitamins, minerals, and electrolytes.

Keeping my fingers crossed for you. 🤞

🙏 And keep pushing them.

[Cherylclaire Forum Support]

Pointless having more folate when it has already been replenished - and B12 yet to be addressed.Honestly, once the direction of travel has been established for b12 and symptoms a match, why would a GP wait for further deterioration ? S/he can make a rational decision regarding treatment now.

My B12 ws found to be 196 ng/L in early 2016. the range was 197 -771 ng/L.

So I was treated immediately with 6 B12 loading injections, then an injection every 3 months. This proved insufficient - and eventually I was given 2 injections a week after my MMA was found to be raised. I was also found to have low folate and ferritin, and osteoporosis of the spine.

I also presented initially with bowel problems (plus fatigue and back/left hip pain) - and was put on a 2-wk pathway to ensure it was not bowel cancer. This was the first appointment and I was glad to have this ruled out early on.

[1123ayoung in reply to Cherylclaire]

I stopped the folic acid on Saturday and I felt a little better (not quite myself) but the fuzzy feeling lifted a little.I’m still really weak and fatigued.

I’ve had a call from the hospital earlier today about him sending out sample bottles for stools. He said not to worry it’s procedure.

That was only Friday I was at doctors so I suppose they’ve rushed it through to rule out anything serious with bowels.

I have really struggled this week with my mental health. Not because of anything other than my health is making me low .

I’m not able to do the things I usually do and it’s getting on top of me.

I just want to feel like me again and prey it’s nothing serious going on.

Thank you for taking time to sending me this message. This forum is honestly such a massive support and I feel less alone.

Thank you x

[Cherylclaire Forum Support in reply to 1123ayoung]

Yes, this can be frightening.Made all the more so because there is such a wide gap between what it really feels like to have this - and what most GPs believe it feels like to be B12 deficient.

There seems little awareness of the severity of this condition. I'd honestly never heard of B12 - before I was told I was deficient.

Even if there was more of an understanding, it is likely that they would want to rule out bowel cancer. Once this has been ruled out, the search can continue.

If the gap between our reality and GP's perception lessened, the search would be much shorter. Treatment would start sooner.

So let's hope it is second on her list !

Always people to talk to here. Helped me countless times.

[mcg-woo]

I live in the US and I was treated with two monthly injections having an initial b12 serum of 282. Though I was very symptomatic, I had not even shared all of my symptoms because I was being treated by a gastroenterologist. I only shared the gastro symptoms and was concerned about severe reflux, pain and unexplained weight loss.

An MMA test should show a b12 deficiency in borderline cases. However, it’s pretty simple that if the numbers are somewhat on the low side and the patient is symptomatic, it should be treated with injections.

Advocate for yourself to get proper medical treatment but he prepared to take your health into your own hands and learn to self inject if that is the only option you have. It’s better than to continue to get sicker without proper treatment. Best of luck to you and I hope you feel better soon.