Recent bloods, advice please : These are my sons... - Thyroid UK

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Recent bloods, advice please

Blister4 profile image
19 Replies

These are my sons recently taken labs. Bloods drawn at 8am with Levo omitted.

He is presently taking levo 75mg, his GP is reluctant to increase. Diagnosed with hashimoto 5 years approx.

TSH….2.34 Range 0.27-4.2

T4….19.7 Range 12-22

T3….4.8. Range 3.1-6.8

Active B12 34.5. Range 37.5-188

D3 44.1 Range 50-250

Antibodies are still high. What impact does hashimoto have on B12 and D, could it be the hashimoto causing those deficiencies?

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Blister4
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19 Replies
helvella profile image
helvellaAdministrator

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:

healthunlocked.com/pasoc

Blister4 profile image
Blister4 in reply tohelvella

Thanks for your comment. I’ll post on that site too.

Do his thyroid blood look okay?

helvella profile image
helvellaAdministrator in reply toBlister4

No - but they are more complex to discuss and I thought I'd try to address the B12 to simplify what we have left.

Blister4 profile image
Blister4 in reply tohelvella

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

helvella profile image
helvellaAdministrator in reply toBlister4

TSH - most people find they need this to be near or below 1 to feel well.

T4 - could be fine, but its level conflicts with the TSH.

T3 - probably a touch low.

Has he had ferritin and other iron levels tested?

How old is he? And are the ranges age-appropriate?

Blister4 profile image
Blister4 in reply tohelvella

Thanks for the explanation.

He is 22yrs old,

His ferritin was 84.

So most people feel better with a TSH at 1, do we achieve this by an increase in Levo?

helvella profile image
helvellaAdministrator in reply toBlister4

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.

Blister4 profile image
Blister4 in reply tohelvella

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?

Wired123 profile image
Wired123 in reply toBlister4

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)

Blister4 profile image
Blister4 in reply toWired123

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!

Thankyou

Wired123 profile image
Wired123

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.

Blister4 profile image
Blister4 in reply toWired123

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

SlowDragon profile image
SlowDragonAdministrator

To be able to utilise thyroid hormones we need GOOD vitamin levels

Low vitamin levels common when not on high enough dose levothyroxine

B12 is dire

Assuming he’s not vegetarian or vegan…..?

He needs testing for Pernicious Anaemia

Likely to need B12 injections, and if not then daily B12 supplements

What was folate result?

Vitamin D is insufficient

GP should prescribe 1600iu vitamin D everyday for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Ferritin is low for a bloke

Look at increasing iron rich foods. Red meat daily. Liver or liver pate once a week etc etc

Retest thyroid levels in another 6-8 weeks likely to see Ft4 has lowered so that he can get next dose increase in levothyroxine up to 100mcg daily

As he has Hashimoto’s is he on strictly gluten free diet and/or dairy free diet

SlowDragon profile image
SlowDragonAdministrator

75mcg is only one step up from starter dose

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

Blister4 profile image
Blister4 in reply toSlowDragon

Thanks for the reply and information.

He is 63.5kg and is strictly gluten free.

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.

SlowDragon profile image
SlowDragonAdministrator in reply toBlister4

So guidelines suggest at least 100mcg per day

63.5kg x 1.6mcg = 101mcg

At moment his vitamin levels are so poor his conversion rate is terrible….so Ft4 (levothyroxine) is high …..but Ft3 (active hormone) is too low

You need to ensure he maintains OPTIMAL vitamins at all times

Many, many Hashimoto’s patients need to supplement vitamin D, magnesium and vitamin B complex continuously to maintain good levels

Often (especially in his case) initially, essential to improve B12 FIRST before adding vitamin B complex

He likely needs injections. If not ….Definitely daily B12 supplement

Get GP to test for Pernicious Anaemia BEFORE starting on any B vitamins

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

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

B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

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

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

endocrinenews.endocrine.org...

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

healthunlocked.com/thyroidu...

Post discussing start B12 injections

healthunlocked.com/thyroidu...

Only add one supplement at a time then wait at least 10-14 days to assess before adding another

Suggest he start with vitamin D

Then magnesium - afternoon or evening….at least 4 hours away from levothyroxine

Then B12 injections or supplements

Then vitamin B complex

Meanwhile increasing iron rich foods in diet

Consider getting selenium, copper and zinc levels tested too

humanbean profile image
humanbean

Since your son's B12 is so low you might find some useful information on these two links.

There is a very recently produced draft guideline for diagnosis and management of B12 deficiency.

nice.org.uk/guidance/GID-NG...

And the associated webpage :

nice.org.uk/guidance/indeve...

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.

healthunlocked.com/pasoc

radd profile image
radd

Blister4,

'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.

Blister4 profile image
Blister4

Yet again I cannot thank you all enough for the wonderful information, guidance and support. You are all indeed a wealth of knowledge.

We now have a plan and a clearer way forward. Phew relief!

Again very much appreciated

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