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Shelaghb profile image
4 Replies

I have recently been told my B12 is low , so have had a course of 6 injections, every other day. I was then booked a blood test. When I eventually got the result it was to tell me the test had be cancelled. I spoke to doctor and he said I didn’t need a blood test until three months from now and that is why it had been cancelled. And at the same time he decided to drop my lethyroxine from 100 to 75 my per day.

Should I still be feeling tired all the time and can’t lose weight as hard as I try? Why did I get two doctors saying completely different instructions?

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Shelaghb profile image
Shelaghb
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humanbean profile image
humanbean

On what grounds was your Levo dose dropped from 100 to 75mcg?

If you haven't got a copy of your results and reference ranges it is well worth while asking the receptionists (NOT the doctor) for a physical copy of your results from, say, the last year. Don't accept hand-written results and don't accept verbal results either. You need a copy of the results printed directly from the computer to reduce the risk of errors.

Another possibility is that you ask for online access to your full medical records and blood test results. In both these cases you will need to show proof of identity, and possibly proof of your address.

...

Anyone who has had recent injections for B12 is almost certain to have very high levels of serum vitamin B12 in the blood. It doesn't mean that they are over-dosed.

It would be a good idea if you were to ask people on the Pernicious Anaemia Forum on Healthunlocked about your B12. They would probably tell you that there is no justification for ever testing B12 level in someone who has been recently injected. You can find that forum at this link and I would suggest that you join and ask them about your situation :

healthunlocked.com/pasoc

They are more knowledgeable on the subject of B12 than we are. :)

shaws profile image
shawsAdministrator in reply to humanbean

Your blood test should have included whether pernicious anaemia was present.

P.A. is common but a serious condition if not diagnosed. We can have changes in our stomach.

nhlbi.nih.gov/health-topics...

SlowDragon profile image
SlowDragonAdministrator

Never agree to dose reduction based just on TSH

If B12 was low, likely folate and vitamin D maybe too….possibly ferritin as well

Low vitamin levels tend to lower TSH

Essential to test TSH, Ft4 and Ft3 together

all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

MariLiz profile image
MariLiz

Hi there, they usually do a blood test six weeks after the loading doses to see how well your body is managing the levels. After that you should be on a regular maintenance dose 12 weekly or 8 weekly). If you have continuing neurological symptoms they ought to keep up the injections every other day. Until there is no further improvement.I don’t understand why your thyroid dose has been reduced. My ability to use the thyroxine I’m taking improved once my low B12 was treated.

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