vitamin B12

[Greenbutterflys]

Hi, I had a total thyroidectomy 7 years ago, I have fibromyalgia and CFS but recently my fatigue and joint aches and pains are unbearable. My most recent blood tests show my Serum Vitamin B12 to be at 282ng/l would you say this is on the low side? Any advice at this stage would really be appreciated i be just turned 54 but feel about 80!

[SeasideSusie Remembering]

Greenbutterflys

My most recent blood tests show my Serum Vitamin B12 to be at 282ng/l would you say this is on the low side?

Yes, that would be considered low. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

Joint aches and pains can be due to low Vit D. Have you had this tested? If not it would be a good idea and if GP wont do it (many wont, they say it's an expensive test and everyone in the UK is low in Vit D) you can get it tested privately.

What about Folate, was that tested? It works with B12.

Ferritin? That's important too.

All those key nutrients just mentioned are important, they need to be optimal for thyroid hormone replacement to work properly.

How much Levo do you take?

What are your current thyroid test results for TSH, FT4 and FT3?

Do you do your thyroid tests as we always advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:

healthunlocked.com/thyroidu...

If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Do you take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Do you take any other medication and supplements 2 hours away from Levo (some need 4 hours).

[Greenbutterflys in reply to SeasideSusie]

I am taking 250 micrograms of levothyroxine daily in the morning before any food, drinks or supplements

My serum folate - 10.8 ng/ml

Ferritin- 22ug/l

Free T4 -16.8 pmol/l

TSH- 0.07 Miu/l

[SeasideSusie Remembering in reply to Greenbutterflys]

Greenbutterflys

Do you have the reference ranges for those results please, ranges vary from lab to lab so we need them to be able to interpret your results? And did you take your Levo before this test or did you leave 24 hours since last dose?

We can tell straight away that your ferritin is a problem so you should discuss this with your GP.

From: cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Ask your GP to carry out a full iron panel to include

Serum iron

Saturation percentage

Total Iron Binding Capacity

Ferritin

Make sure that you fast for 12 hours before this test (NHS recommendation on their website) - you can have water - so an early appointment before breakfast is advised. If you take iron tablets then leave them off for a few days before testing iron, and don't have an iron rich meal the night before (red meat, liver, liver pate, black pudding, etc).

This test will show if you have iron deficiency and if you do your GP should treat accordingly and monitor your results regularly with an iron panel.

Also ask for a full blood count to check for anaemia. You can have iron deficiency with or without anaemia. You can also have low ferritin with or without iron deficiency so all these tests will give a full picture.

Do you take any supplements? If so what and the dose?

250mcg Levo is quite a high dose, it will be interesting to see where your FT4 lies within it's range. It's also important to know where your FT3 level lies. T4 has to convert to T3 as T3 is the active hormone that every cell in our bodies need and low T3 causes symptoms but unfortunately doctors are ignorant of this fact so FT3 is rarely tested. If your GP can't get it tested (and it's often the case that even when a GP requests it the lab ignores the request and doesn't test it) then I would suggest you do a private thyroid panel to include TSH, FT4 and FT3 all tested at the same time.

Cheapest for basic thyroid panel is a home fingerprick test from Monitor My Health which is an NHS lab at Exeter hospital. This is likely to be more acceptable to a GP than other private labs. Medichecks and Blue Horizon are other popular labs and they all offer a variety of tests so if you need thyroid plus vitamins all labs do this.

Details here, including discount codes: thyroiduk.org/help-and-supp...

If your GP wont do Vit D (and I think this is important due to your joint aches and pains) then there is an NHS lab who offer a dried blood spot fingerprick test here (if you don't want to do a thyroid/vitamin bundle with any of the other labs):

vitamindtest.org.uk/

[Greenbutterflys in reply to SeasideSusie]

can you see the photos ? Not sure I’ve done it right! 🤣

[SeasideSusie Remembering in reply to Greenbutterflys]

No, can't see any photos.

[Shangonmom in reply to SeasideSusie]

I apologize if this is not the correct format to ask a question. I saw the B12 and thyroid question and am dealing with low B12. I was diagnosed in January and started V &O in Feb. My oncologist drew a B12 after my first consult, along with alot of other testing, including flow cytometry. My B12 was 333 then. He didn't mention anything about B12 being on the low end of normal. I didn't know any better and thought everything was OK, at least as far as my B12. He told me the flow cytometry was an "incidental " finding. It showed an abnormal b cell population but my WBC's were only slightly elevated at 12.3 and absolute lymphs at 8.85.Hgb/hct and platelets all normal. He thought it was a "tummy problem" and sent me to GI. Had an EDG/ colonoscopy which were essentially normal. Had my BMB which showed 60% bone marrow involvement CLL/SLL. And he recommended V&O at that time. I continued to have GI issues( pain, weight loss, ZERO APPETITE.etc) and went back to GI 5/30/23. He ordered labs, including B12, and now my B12 is 215. My iron is 80 folate 4.5 and TICB 246 ferritin 164. Also my RDW is high at 52.2 my MVC is 94.8. Thorough his patient portal I asked if further testing should be done and the reply I received back was "that's great you're taking a B12 supplement, that should be good enough because you don't want too much B12 either." I was frustrated by that response and shot back, "is there any concern for pernicious anemia and can alot of my symptoms be caused by low B12?" To which they told me I need to go to PCM or Oncology because they don't administer it...

I also have hypothyroidism due to status post radiation for Hodgkins in 1989. And take 75mcg levo (the dose had been decreased twice since starting V&O) I've reached out to GI who passed me off to Oncology who hasn't responded to my inquiry.

I've made an apt with my PCM for tomorrow.

I have started a methylcocalamin supplement but am very frustrated that this hasn't been addressed.

I'm not even sure if I have a question but I guess it would be

What should I ask my PCM regarding further testing and treatment? Because I see where you refer to an article that says you can start having neurological symptoms with levels under 550? And I'm starting to have some serious vertigo...

I asked the specialty pharmacy if the V causes B12 to drop and she said no.

Any advice is greatly appreciated.

Shannon

[SeasideSusie Remembering in reply to Shangonmom]

Shangonmom

I'm not medically trained (nor is anyone else here, we're all patients) and I'm afraid I don't have a clue about a lot of what you are asking and some of the abbreviations - V & O, flow cytometry, EDG, Had my BMB which showed 60% bone marrow involvement CLL/SLL, PCM, I asked the specialty pharmacy if the V causes B12 to drop and she said no. I'm afraid this is beyond any experience I have. You can try making a new post of your own where more people can see it, or maybe post on the Pernicious Anaemia forum here on HealthUnlocked which is dedicated to B12.

[Shangonmom in reply to SeasideSusie]

Thank you. And sorry for the confusion.

[Blade5554]

I got my test done in Jan and i mine was 286. As per NHS it's in the normal range. Normal range is 200 to 800. Now i'm at 325. So showed my report to a doctor in India and he suggested it's considered borderline and needs to go up. Found an article on the internet than suggest 400 and above is optimum. So i 'm taking iron,b12 now. My muscle pain has reduced but my Ear is still ringing. Might not be related. BUt B12 beeds to go up thats for sure.