help with diagnosis b12 215 vs 211 reference range GP refuses to treat.

[Hoxo]

Hi my friend has Elhers Danloss and was recently diagnosed with Hashimotos. She has fatigue brain fog numbness sore tongue etc. She had active private B12 test which came back below range and GP tested serum B12 which came back at 215 ng/l vs bottom ref range 211. GP says in range so won’t treat and won’t look at private tests. She’s been referred to ENT for her sore mouth! She has low folate also which they’re treating. Is there a good way to sort this. Letter to GP. Send NiCE guidelines. It’s just so ridiculous.

[PhilAB]

If people still have faith in UK medical system after the last three years, they really need to give their head a wobble. We need to look after our own health as much as we can.

She may not have been diagnosed with PA or b12 deficiency but she is surely showing all the signs. Hence, treat symptoms = b12 injections.

Obviously, I am not medically qualified but suggest:

1. B12 EOD

2. Folate

3. Increase potassium in diet

4. Increase Magnesium, zinc, Vit D.

5. Not sure what ferritin is - may need this - but if taking ferritin, take a very good Vit C - as vit c helps absorption of Ferritin.

6. Go organic - not supermarket - find local farmers.

7. Look at diet, avoid Gluten, diary, alcohol, caffeine, reduce sugar.

8. Download APP's which scan food (barcodes) - you will be shocked whats in most food.

9. Use coconut oil rather than poisonous Veg oils.

10. Foods I would go for - Beef, eggs, sweet potato, water melon, coconut water (rebel Kitchen), chicken, celtic sea salt, broccoli sprouts.

11. Buy a proper water filter - avoid tap water and bottled water.

12. Start growing your own food.

13. Iodine

14. Sea moss, soursop.

[Gambit62 Administrator]

Things that you can try:

a) Refer to the BCSH guidelines on cobalamin and folate disorders - in particularly the discussion of the sensitivity etc of the serum B12 test and the recommendation to evaluate on the basis of symptoms rather than tests when there is a discordance between the two. The test is only accurate to 20% anyway so being that close to the bottom of the range could easily be a deficiency.

onlinelibrary.wiley.com/doi...

b) Refer GP to the are of the PAS website particularly aimed at helping medical professionals improve the recognition and treatment of B12 absorption issues.

pernicious-anaemia-society....

[Jillymo in reply to Gambit62]

👍 👋

[Cherylclaire Forum Support]

Well, there may be a silver lining here ...

I was sent to ENT for salivary duct strictures, and my GP sent the consultant a very detailed report, including medical history re B12 deficiency and self injecting every other day.

The senior ENT consultant had read the report thoroughly, and had it with him. He looked at my mouth, listened to me, let me show him some photos - and then told me that I had severe B12 deficiency, that I was right to suspect that restricted saliva would have an impact on access to B12 in food. More importantly to me at this stage, he told me not to give up with the EOD injections, that I must be persistent because it would take a very long time to get improvements.

No tests were necessary: he knew what B12 deficiency looked like. He then referred me to the saliva gland specialist. I am now seeing an Oral Medicine consultant, who has managed to help me control my angular cheilitis and now trying to find answers for my burning tongue. So far, no cultures have taken - so not staphylococcus or candida.

Although the burning is still an every day occurrence, there is far less swelling (and pie-crust edging as a result of teeth pressing against swollen tongue). I believe that these gradual improvements are entirely due to frequent B12 injections - but still willing to try anything he might come up with.

Initially alarmed at my sky-high B12 serum level, he has now spoken to experts and is happy for me not to attempt to reduce my injections as first suggested ! I am happy that he has reached this decision and we can carry on focussing on elimination.

My GP wanted my ferritin to be above 60 ug/L as below this level, symptoms can occur. The Oral Medicine consultant preferred raising ferritin levels to 80 ug/L.

Both ferritin and folate were initially low and treated (after B12 injections commenced), as for vitamin D: osteoporosis of the spine and osteopenia of the neck were found by Dexascan at about the same time. Over time, vitamin D tablets and Raloxifene have helped to reduce this, along with a lot of walking !

[Hoxo in reply to Cherylclaire]

This is interesting. Thank you for your reply ( and thanks for the replies above). I said to my friend well I bet the ENT doctor will say ‘you have B12 deficiency’ and tell your GP to put you on injections. So annoying that Gp not using common sense. Friend is 4 units above the lower limit and has all the symptoms. 🤦🏻‍♀️

[charks]

Sorry to be the fly in the ointment but the chances the ENT doctor will diagnose B12 deficiency is very slim. Cherylclaire was very lucky. Most of us aren't. And whilst she's waiting for referral her B12 levels will be getting lower and she will be getting worse. I think if it's a long wait she should pressure her GP to give her another B12 test in a couple of months. It will be probably be below the magic 211 and that should trigger the GP into action.

[Hoxo in reply to charks]

I’m currently advising her what to do. I think she should go back to Gp and ask Gp to follow guidelines. If not think she’s going to go down the SI route.

[Polaris in reply to Hoxo]

It might be worth first, politely putting all symptoms in writing - or taking someone close to another appointment - less likely to be ignored or dismissed, and is on record - especially if you quote the BMJ guidelines, as well as research that says there is no reliable test, so diagnosis IS by looking at symptoms…… 🤞 🤞

[Cherylclaire Forum Support in reply to charks]

I was thinking both worth doing. Push GP to act, while hoping also to get ENT backup if possible.

Hoxo - I was, at 196 ng/L, 1 unit below the local range (197- 771 ng/L) in 2016. So maybe I was lucky. My GP certainly seemed to think so. Seven years later, like so many of us here, I am still having to self inject frequently to keep symptoms under control. But this is not the case for everyone - those able to manage their condition well on the NHS frequency do not tend to need to post here.

Quite why your friend's GP has not acted yet, given that she has linked autoimmune conditions, recogniseable symptoms, a clear direction of travel for serum B12 and a below-range reading for active B12 .....hard to understand. What does the GP think s/he is faced with here ? Perhaps that is a question worth asking.

Medical guidelines advise against treating folate deficiencies before any B12 deficiency has been addressed. Also might give GP pause to think this through.

An MMA test can be a useful secondary indicator in support of a suspicion of B12 deficiency, since methylmalonic acid (MMA) has to form a link with B12 in the bloodstream to allow the B12 to function at cell/tissue level. If low/no B12 either available or able to form the link, MMA will build up quite rapidly. Sufficient introduced B12 will then bring MMA serum levels down just as rapidly (certainly after the loading dose of 6 injections) - unless the problem lies with forming the link (known as functional B12 deficiency). This test can be done on the NHS - but not easily at primary care level. My GP only managed on the third request and this is where I really was lucky. My MMA was raised despite the NHS B12, so I was given frequent injections. Even with these, it took three years to get raised MMA level to drop into range on the 6th test.

Perhaps an MMA test could be arranged through the ENT specialist ?

Glad your friend has you there. It's never easy and that support really helps.

[Hoxo in reply to Cherylclaire]

that’s really helpful advice. Thank you.

[mcg-woo]

I was treated with injections in the US with a 282 result. At the time, I could barely get out of bed and when I managed to, it was only for a short period of time. Symptoms are clearly present in this case and the patient should be treated with B12 injections.

[Nackapan]

My dsghter has this condition. Needs 10 weekly b12 injections and daily 400mcg folic acid.

The Pernicuos Anaemia society

B12 .org

Ehlers Danlis Society

Have information of how to write to a Gp.

Otherwise gef it prescribed at consultant level.

It's preferable to treat b12 before folate .

Has she trialled b12 tablets .

Of had a previous b12 test result to compare.?

Also ferritin iron vit D often need monitoring too.