B12 level high

[Harlech]

Hi, fews weeks ago I received a text from the surgery to make appointment, this turn out to be routine blood tests, on my appointment I was informed that blood tests are limited due to the shortage of vacutainer tubes. (I was aware of the shortage so I was surprised that I was still having to go to my appointment) Though a few issues at surgery my appointment ended up with the tests being taken at midday. 1.blood test thyriod tsh, ft4 only, told theses had to be done as I hadn't had 1 for 12 months, argued that I had sent in results, Dec. 2019, Aug 2020, Jan. 2021, March 2021, which were Blue Horizon, so obviously these are being ignored. I was persistent that B12 was done due to high levels for 3yrs without supplementing, l eventually got results from the receptionist. Theses are NHS

Tsh 2.36

Ft4 15

No ft3 I expected that, also no ranges given she doesn't understand them but told in range all OK. I leave it 2 months & order B/Horizon test.

B12 is high at just over 2000 range (200 - 900) that's what is was in 2019, as at this moment I don't have a print out & my surgery don't put results online.

I have tried goggling symptoms of high B12, but can't really find anything, my thoughts are to have an active B12 b/test.

All advice much appreciated and thank you for reading my post.

[SlowDragon Administrator]

Previous full results from 4 months ago

FERRITIN. 68.2. (13-150

MAGNESIUM. 0.94. (0.66-0.99

CORTISOL. 481.0. (113 - 456. 6AM - 10AM

TSH. 1.89. (0.27 - 4-20

T4 TOTAL. 116.0. (66 - 181

FT4. 17.5. (12.0-22

FT3. 4.84. (3.1-6.8

ANTIBODIES. OK

VIT. D. 67. (50-175

VIT. H. 1272. (145 - 569 *

FOLATE. >45. (8.83 - 60.8 *

TAKING 50 LEVO, have been since Oct 2020.

March 2021

TSH 2.13

FT4 17.4

FT3. 4.61 RANGES AS ABOVE

My B12 1342 >Oct 2019

How do you feel?

Are you still only on 50mcg levothyroxine

NHS results and March results show you need dose increase in levothyroxine

Either up to 75mcg daily, of if GP reluctant, to 50mcg and 75mcg daily

Which brand of levothyroxine are you currently taking

Do you always get same brand

EXACTLY What vitamin supplements are you currently taking

Vitamin D is too low

[Harlech in reply to SlowDragon]

Hi. Yes still on 50mg brand accord, DR. will not increase. Vit d fultium 800iu which is on prescription, but there are times I use better you 3000 spray.She says I am in range things are OK & that's it, I have sent to her all copies of B/Horizon b/tests from Oct. 2019 including 1 that had there dr's comment on which i highlighted in yellow reference to tsh being 1 it made no difference. From going the surgery ref. to the recent b/tests as mentioned B/Horizon results are ignored.

Ref. to high B12 level 2000, just found out a dr's phone call is booked for 20th Sept.

Vit's, I take are D, zinc, magnesium spray.

[OudMood in reply to Harlech]

I would advise to make one more appointment F2F if possible (for many it’s not possible) with the GP.

First asking why are they ignoring the blood tests, secondly why are they ignoring your well-being by not increasing Levo. What are their reservations for this?! (Just in case they have a real explanation).

Afterwards I would likely go find a new GP.

This surgery clearly isn’t the best for you..

And vit D at 67 is literally barely above their own limit.

Try this calculator to see how much vit D you actually need for your maintenance dose

grassrootshealth.net/projec...

[Harlech in reply to OudMood]

I have been trying to sort this thyriod issue for approximately 9yrs. I have changed surgeries 3 times & this 1 as been the only 1 that's given me levothyroxine. I think now its not worth changing anymore as qiute a few surgeries are joining up together. Whether she regrets giving me levo or another Dr as said something to her, but it's obvious something as happened, as my B/Horizon B/Tests have & are been ignored, as I have sent in 7 sets of results date from July 2018 3 for 2021 January , March & May, but according to the practice nurse I hadn't had 1 done for. 12 months, I did tell her I had & the results should be on my medical recordsI attached a letter stating that those results were to be added to my medical notes,

Have checked vit D calculator I use the vit D spray a bit more often.

Thank you for your reply.

[SlowDragon Administrator in reply to Harlech]

Print out guidelines on dose by weight

Ask GP to explain why they are NOT complying with guidelines

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[OudMood in reply to Harlech]

No worries ☺️.

That’s a bit of a nightmare for you 😕.

You possibly need to have the chat with the doctor directly and inform them as well of the tests you have been doing.

It may be that they are aware but they need to do the tests on their end as well once every 12 months?

[SlowDragon Administrator in reply to Harlech]

Are you sure you’re not eating any fortified foods

Some cereals etc have B12 added

healthline.com/nutrition/vi...

If not

Insist of further testing

pubmed.ncbi.nlm.nih.gov/146...

So you need to get levothyroxine dose increased

If GP won’t increase the levothyroxine dose you will need to see thyroid specialist endocrinologist ….most likely privately

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

[SlowDragon Administrator]

Another article on high B12

academic.oup.com/qjmed/arti...

[Jazzw]

On the B12 front—and please don’t panic about this, I’m only writing this so that you know about the possibility—if it’s high and you aren’t supplementing, it could indicate you have problems with your liver.

Ideally your doctor should be ordering liver function tests.

As I said, don’t panic, there are other explanations but it’s definitely something which needs checking out.

[OudMood in reply to Jazzw]

If you don’t mind… I’m asking for myself here.. I’ve had my B12 over 800 ( upper limit was 663, I believe) and I’m sure I had liver testing at the same time too.

What should I look out for? Any specific results?

I was NOT supplementing and I’m not a cereal eater 😅

[Harlech in reply to Jazzw]

Hi,I registered at this surgery 2019.I have mentioned twice about the B12 being high, answer its ok, when it was 1532 the laboratory remark was No Action & I think the dr' s think ok. Why they have taken notice this time I don't know, but I haven't as yet got a print out of the new results.I have for few years had a issue which as got worse ref. to my back & legs, low back pain, joint pain & my legs get a tingling feeling inside & after walking 3/4 minutes the muscles feel taut & painful, so I am wondering if there any connection due to the B12.

B12 1532. Range. (200 - 900)

So I now wait until Sept. 20th when a Dr phones me about this B12 being 2000.

I appreciate your reply.