B12 deficiency normal level after b12 supplements from gp but symptoms still persist

[MADAMMAZDA]

Could somebody please help me get to the bottom of what is wrong with me? I have had raised MCV on my FBC for several years now (5-6+), my MCH has been in range for the last couple of years, but had also been raised for a couple of years previously. Last January I was told by my GP I had folate deficiency my result was 4.4 I supplemented with folic acid for a month and when retested a couple of months later it was at 26.0, problem solved, however my MCV is still continually raised. I have neuropathy of my hands feet and tongue, burning sensations/pins and needles, I have had problems swallowing bulky foods on and off for the past 18 months, fingernails are falling to bits and have faint white lines near the top, mild hair loss. I have had IBS since my 20,s I am now 47, however I have had chronic diarrhoea for the past 2 years. I am now suffering from fecal urgency, no warning and urinary stress incontinence/urgency. I was diagnosed with psoriatic arthritis 7 years ago, auto immune in nature. I have had my thyroid tested several times, also for diabetes and tested for coeliac disease, all negative. My B12 was at 284 at the same time as my folate deficiency, this further dropped to 247 a few months later. I take omeprazole as I am on celecoxib anti inflammatory for the PSA along with steroids, sulfasalazine, leflunomide etc I have been on most of these medications for 7 years bar the leflunomide which I restarted last summer after a 10 month break. My GP put me on some B12 tablets in November for a month then retested, my level had gone up to 295, I requested some more as I thought my level was still quite low and he obliged. I have just been retested and my B12 level is now 411, folate 13 with no supplements since the beginning of last year, but my symptoms are not improving and my MCV is on the rise again. I have been to see the dental team at Guys regarding the burning tongue and she is in agreement that it is a neuropathy, she has advised for neurological testing (nerve conduction test) she also did an iron panel test as my ferritin has been low for quite a while (In the 30’s) but has dropped in the last 9 months to 16, however my iron level results came back within range???? She also tested zinc and this was borderline low. Any ideas? Anyone?? Can I just add that all my liver results have been fine and urea and electrolyte all come back normal, although my potassium does keep dropping, but still within range.

[helvella Administrator Thyroid UK]

For B12 and/or folate issues, I suggest you go to the Pernicious Anaemia Society forum and post there. They are the ones who have the greatest experience of such things.

healthunlocked.com/pasoc

Have you had any thyroid tests?

[MADAMMAZDA in reply to helvella]

Yes they all come back negative, I have had goiter in the past and an overactive thyroid but that was several years ago

[shaws Administrator in reply to MADAMMAZDA]

If you get your latest blood test results for thyroid hormones, you can post them here. I have hypo and P.A. If we have one autoimmune disease we can also develop others.

[MADAMMAZDA in reply to shaws]

I posted them on the reply above👆🏻

[MADAMMAZDA in reply to MADAMMAZDA]

I meant below 🙈

[MADAMMAZDA in reply to helvella]

I just realised I posted in the wrong section 🙈

[SlowDragon Administrator]

So if you had goitre and hyperthyroid in past are you now on Levothyroxine?

For full Thyroid evaluation TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4 together plus vitamins

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Your gut symptoms suggest gluten intolerance. This is extremely common with thyroid conditions as leaky gut is often present

Changing to a strictly gluten free diet may help reduce symptoms and help gut heal

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

Omeprazole lowers both B12 and magnesium. So you may need regular supplements of both

These are often low anyway if on Levothyroxine

gov.uk/drug-safety-update/p...

pulsetoday.co.uk/clinical/m...

[MADAMMAZDA in reply to SlowDragon]

Hi,

Thank you for you reply, I do not take any medication for thyroid, as far as the GP is concerned, everything is within range, they do however, seem to be all over the place. I was put on beta blockers in the past, many years ago I don't know if that was for overactive thyroid or not, but it was definitely mentioned.

I have been tested for coeliac disease and it came back negative, the GP has suggested gluten intolerance.

Below are all the results I have, I have been on vit d 800IU x 4 daily for the past few years hence the high value

24/04/17 Serum free T4 level 14.6 pmol/L 10 - 19.8pmol/L

31/01/18 Serum free T4 level 13.4 pmol/L 10 - 19.8pmol/L

18/06/09 Serum TSH level 0.71 mu/L 0.35 - 5.5mu/L

20/11/15 Serum TSH level 1.96 mU/L 0.35 - 5.5mU/L

07/12/15 Serum TSH level 3.01 mU/L 0.35 - 5.5mU/L

24/04/17 Serum TSH level 0.85 mU/L 0.35 - 5.5mU/L

31/01/18 Serum TSH level 1.51 mU/L 0.35 - 5.5mU/L

24/01/17 Serum vitamin B12 284 ng/L 211 - 911ng/L

24/04/17 Serum vitamin B12 247 ng/L 211 - 911ng/L

06/11/17 Serum vitamin B12 295 ng/L 211 - 911ng/L

31/01/18 Serum vitamin B12 412 ng/L 211 - 911ng/L

24/01/17 Serum folate 4.44 ug/L > 5.38ug/L

24/04/17 Serum folate 24 ug/L > > 5.38ug/L

31/01/18 Serum folate 13.95 ug/L > 5.38ug/L

20/11/15 Serum ferritin 35 ug/L 10 - 291ug/L

24/04/17 Serum ferritin 31.7 ug/L 10 - 291ug/L

31/01/18 Serum ferritin 16.6 ug/L 10 - 291ug/L

31/01/18 Serum total 25-OH vit D level 76.3 nmol/l

Thanks for all the links and advice, I wonder if it's worth getting the thyroid panel re-done including all the others tests, that the GP doesn't seem to do?

[SlowDragon Administrator in reply to MADAMMAZDA]

Your B12 and folate are getting lower (probably due to Omeprazole)

A good vitamin B complex containing folate may help (in addition to B12 supplements)

If you start or are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D is only just high enough, despite supplementing. Just over 100nmol may be better. Increasing level of supplement through winter might be beneficial.

Many of us use Better You vitamin D mouth spray as it avoids poor gut function.

Good that your GP has suggested gluten intolerance. Gluten intolerance can be as serious and debilitating as coeliac, there's just no easy test for it

Is he referring you for endoscopy first? Or just advised to go strictly gluten free

You must get TPO and TG thyroid antibodies tested. Likely to have to do this privately (NHS often refuses to test if TSH is in range)

But ask GP if they will

Also FT3 needs testing really

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

Stomach acid links

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

[BadHare]

Can you try reducing or cutting out omeprazole, as this impairs nutrient absoption. healthunlocked.com/healthye... Chronic indigeston can be caused by low stomach acid, which hinders nutrient absorption, too. Doctors don't check for this, they just hand out PPI meds that make the issue worse. A spoon of organic apple cider vinegar in water before meals may help improve your digestion & absoption . Try the type containing probiotics. A wee splosh of this, or a little lemon juice in the water you take THs with, may help those work better, too.

I feel dire unless I take high dose sublingual methylcobalamin B12, & have had more success with some brands than others, I also make sure my nutrients levels are as good as I can get from my diet, & supplement B's, D, & minerals on top. Do you take enough D3 for your immune system to work?

Have you tried avoiding gluten & fructans, & adopting a low FODMAP diet for IBS?

[MADAMMAZDA]

Hi,

I have to take the omeprazole to protect my stomach from the celecoxib (anti inflammatories) I also have a sliding hiatus hernia.

I was prescribed d3 by my Rheumy and have taken for several years hence the high level below:

31/01/18 Serum total 25-OH vit D level 76.3 nmol/l

my B12 has been low for a while, however I have had no improvement with symptoms on the Cyanocobalamin, other than it lowering my MCV a little and my B12 level rising to 412 however my MCV is still above range and creeping back up??

[MADAMMAZDA in reply to MADAMMAZDA]

I'm also on 3 immunosuppressant's for the psoriatic arthritis