I think the two most likely causes for low B12, indeed, not just low but below range, are a diet low in B12 and/or poor ability to absorb B12. Which could be due to Pernicious Anaemia.
It is not unusual to see Pernicious Anaemia alongside thyroid disorders - after all, both PA and many cases of thyroid disease are autoimmune. And having one is often regarded as predicting a higher likelihood of having another.
I suggest you consider posting on the Pernicious Anaemia Society forum:
So you say his thyroid bloods don’t look okay, please can you give me an idea of what is happening with his thyroid and what we need to be pushing for with his Gp. We’ve been at this for 5 years and we are really struggling
No - something is odd. If that T4 was 12 to 24 hours after last dose, then the TSH level needs explanation. Just increasing levothyroxine might not be the right approach.
But at this moment, I'd be more concerned about B12.
Okay, we will definitely tackle the B12. But you say odd, i know his Gp will dismiss his thyroid bloods as “normal” . What can I say to him for him to look into the TSH it further or refer to an endo?
His T4 looks ok, but his TSH is a bit high (for adults I know most good doctors want this to be about 0.5-1.0, not sure what the target is for kids). His T3 is definitely on the low side and perhaps a trial of T3 tablets is the way forward, again you need an Endo for that. You will also need an Endo who believes in T3 therapy, so you will need to get the Thyroid UK list of Endos who prescribe T3 and ensure you get referred to your local Endo from that list (you will have to badger your GP)
Excellent advice, I’ll get that list from thyroid uk looks like we may need it!
It’s such a minefield and without forums like this one it would be so difficult navigating it all. The biggest hurdles to treatment are often the Gp and endo’s!
I would request a referral to an Endocrinologist who can check why B12 is low - blood test called Gastric parietal cell antibodies will determine if he has PA.
The other reason to see Endo is so they can recommend B12 injections every 3 months indefinitely. GPs normally only give 3 or 4 jabs then let levels fall again which is idiotic but that’s how the NHS behaves sadly. My mother has it in writing from endo to have injections every 3 months and GP has to abide by this.
I’d say penny pinching thieving GPs but it’s not their fault their budgets are tight thanks to millionaires running the government for the last decade who do not understand or care about the NHS nor schools.
I totally agree the Nhs is so miss managed and top heavy with some unnecessary management!
That’s fantastic advice and I’ll write it all down. It’s so helpful to have an awareness of what is likely to come from the Gp, forewarned is forearmed and I’ll push for an endo appointment
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how he’s doing his tests?
FT4: 19.7 pmol/l (Range 12 - 22)
Ft4 77.00% through range
FT3: 4.8 pmol/l (Range 3.1 - 6.8)
Ft3 only 45.95% through range
improving all four vitamins to optimal levels should help improve conversion of Ft4 to Ft3
Similarly….gluten free/dairy free may help
Approximately how much does your son weigh in kilo
His bloods were tested at 8am before any Levo was taken and without food/drink.
We will definitely work on improving all the vitamin levels .
The guidelines are a god send I like to back up any requests to my Gp with Nice guidelines or other research ….they can’t argue with that, it’s such a battle at times.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
The fact that the guideline is still in draft form may put your GP off but it is the first guideline for B12 that NICE has produced, so hopefully it might to be helpful, although I have seen some suggestions from the Pernicious Anaemia forum on here that the guideline has quite a few drawbacks.
'Antibodies are still high. What impact does hashimoto have on B12 and D, could it be the hashimoto causing those deficiencies?'
It is a combination of many factors. We only want ‘healthy’ inflammation but thyroid antibodies are unwanted and chronic inflammation by their very nature. They are created to deal with debris after WBCs damage/destroy healthy thyroid tissue, but they also send out further inflammatory signals inciting further conditions.
Hypothyrodisms low level of thyroid hormone can induce low gastric acid that impairs absorption of iron, nutrients and thyroid meds, and allows infection/yeast over growth.
Your sons thyroid hormone results are not too bad and TSH can lag behind, particularly if there's difficulties with absorption, utilisation, etc.
T4….19.7 Range 12-22 - 77%
T3….4.8. Range 3.1-6.8 - 45.9%
But both the Vit B12 and Vit D are dire and should be addressed as dangerously low. helvella's suggestion of PA should be investigated and you could ask your GP to test homocysteine and MMA. Also intrinsic factor antibodies and parietal cell antibodies. This will confirm or eliminate PA.
Isabella Wentz's book called The Root Cause gives great information on the damaging effects of autoimmunity and how to best manage it.
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