Test Results -advice please: I've got my test... - Thyroid UK

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Test Results -advice please

Dandelions profile image
19 Replies

I've got my test results in. (Tested at 10am on empty stomach.)

TSH 2.79 mu/L (0.35 - 5.5) 47.4%

Free T4 (fT4) 12 pmol/L (9 - 23) 21.4%

Free T3 (fT3) 4.8 pmol/L (3.5 - 6.5) 43.3%

T4:T3 Ratio 2.500 

Folate - Serum 6.2 ng/L (3.3 - 99999) 0.0%

Serum Vitamin B12  242 ng/L (190 - 910) 7.2%

Ferritin 29 ug/L (13 - 300) 5.6%

Annoyingly, they haven't tested Vitamin D, so I'll order a test.

I'll also order a coeliac test on advice of SlowDragon. Is this the best place to do so bluehorizonbloodtests.co.uk... ?

To me it looks like vitamins are all problematic, but thyroid hormones are alright. Is that correct? I'd love to hear your thoughts.

And any advice on best supplements to take.

Thanks so much!

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Dandelions
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SlowDragon profile image
SlowDragonAdministrator

so you know you have Hashimoto’s, but GP won’t start you on levothyroxine because TSH not over 5

TSH is low BECAUSE vitamin levels are terrible

Improving low vitamin levels to OPTIMAL levels should increase TSH so that you can get started on levothyroxine

Ferritin is deficient

Request GP test full iron panel test for anaemia including ferritin

Also, as per NICE guidelines request/insist they do coeliac blood test

B12 and folate are both very low

Ideally GP should do test for Pernicious Anaemia before starting on separate B12 and daily vitamin B complex

Request Vitamin D is tested by GP as vitamin D deficiency is very strongly linked to any autoimmune disease, but especially to hypothyroidism

But get vitamin D tested yourself if GP won’t

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Come back with new post once you have seen GP and got further testing done

SlowDragon profile image
SlowDragonAdministrator

Because B12 and folate are within range …..GP may refuse to test for Pernicious Anaemia

If so you will have to just start supplementing

Starting with separate B12 and after 10-14 days add separate vitamin B complex

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 as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

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

Low folate and keep B vitamins in balance

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 also help improve B12 levels too

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

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) 

currently cheapest on eBay

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 methyl folate supplement and continue separate B12

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

coeliac blood test

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease 

1.1.1 Offer serological testing for coeliac disease to:people with any of the following: 

persistent unexplained abdominal or gastrointestinal symptoms 

faltering growth

prolonged fatigue 

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

SeasideSusie profile image
SeasideSusieRemembering

Dandelions

To me it looks like vitamins are all problematic, but thyroid hormones are alright. Is that correct?

What thyroid meds do you take?

When did you take your last dose before test - should be 24 hours for Levo and 8-12 hours for NDT or T3 (splitting dose day before into 2 or 3).

How do you feel with those thyroid results?

The aim of a treated hypo patient on Levo only, generally, would have TSH 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.

So your TSH is on the high side and both FT4 and FT3 are below half way through range. Those results, for most people on Levo only, would suggest undermedication.

Folate - Serum 6.2 ng/L (3.3 - 99999)

I don't recognise that unit of measurement for Folate, we usually see mcg/L or nmol/L but it is obviously low. Eating folate rich foods can help, as can a good quality B Complex containing methylfolate, eg Thorne Basic B. However, do not start taking this if you have symptoms of B12 deficiency, see below.

Serum Vitamin B12  242 ng/L (190 - 910) ng/L is the same as pg/ml below

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."

Some people with a B12 level in the 300s have been found to have B12 deficiency.

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

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.

If you don't come back and tell us and I have some suggestions for supplementing.

Ferritin 29 ug/L (13 - 300)

You need to speak to your doctor about this.

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.

Your GP should do an iron panel to see if you have iron deficiency plus a full blood count to see if you have anaemia. You can have iron deficiency with or without anaemia. You can have low ferritin without iron deficiency.

Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little.

Dandelions profile image
Dandelions in reply toSeasideSusie

Folate

I was confused by the folate range too. Not that I have experience with them. But the max range seems extremely high. Is this because you can't have too much folate?

B12

Yes, I have symptoms of B12 defiency (brain fog, lower cognitive ability, can't find words/remember names, restless leg, fatigue, irritability, lethargy, loss of libido, persistent cough, constipation, knee pain (not sure if that's joint inflammation)

Also my brother has been told he has a B12 uptake issue. I recognise many symptoms on the list of what my mother has, but doctors have diagnosed her with rare connective tissue disorder.

Is the pernacious anaemia test to find out more detail about this?

Meds

I'm not on any meds. I don't take Levo.

When the endo diagnosed Hashimoto's (2019), they said he'd test TSH levels annually to check if my thyroid was destroyed to the point of needing treatment. The only thing to worry about was if I became pregnant. I asked about B12 (I already knew my brother's problems), he said he wouldn't test. Any symptoms I had were probably down to a virus. As they had gone a bit milder at that point, and that wasn't possible according to him with thyroid failure. Hashimoto's was progressive and not fluctuating.

SeasideSusie profile image
SeasideSusieRemembering in reply toDandelions

I was confused by the folate range too. Not that I have experience with them. But the max range seems extremely high. Is this because you can't have too much folate?

Folate comes with different ranges, just to confuse things. Some come with a proper upper and lower limit, eg 3.89-19.45, some just say >3.89, then you get this stupid one. If it starts with 3.89 I think it's safe to assume that the upper limit would be 19.45 and folate is recommended to be at least half way through range so we would say get into double figures.

Is the pernacious anaemia test to find out more detail about this?

The PA test will determine if PA is the cause of B12 deficiency. It is just one cause of B12 deficiency. PA is an autoimmune disease that affects the stomach and prevents you from absorbing B12 from food. If you have Hashi's (autoimmune) it's possible that you may develop other autoimmune conditions.

Dandelions profile image
Dandelions in reply toSeasideSusie

Super clear. Thank you!

Dandelions profile image
Dandelions in reply toSeasideSusie

Hi SeasideSusie,

Can I test for Pernicious Aneamia myself?

My GP wants to wait to see how I feel after supplementing vitamin D and iron first. But taking in forum's comments, I don't feel comfortable ignoring B12. The b12d.org checklist leads me to the right box of 'severe B12 deficiency'.

Does the Active vit B12 test on Medicheck for example give me all the information I need?

Thanks!

SeasideSusie profile image
SeasideSusieRemembering in reply toDandelions

Dandelions

Does the Active vit B12 test on Medicheck for example give me all the information I need?

No. The test you've already had done is Total B12 which measures the total amount of B12 - both bound and unbound. It's the unbound B12 that is active and available for the cells to use. The Active B12 test measures just the unbound active B12 that's available to the cells but it doesn't tell you if the B12 is actually getting into the cells. Like the Total B12 test, if the result of the Active B12 test is low it suggests possible B12 deficiency hence suggesting further testing to confirm this.

Can I test for Pernicious Aneamia myself?

Yes but it's expensive and requires venous blood draw, and if it shows PA you'll need B12 injections so will your GP accept the results?

Medichecks PA test £280 (less 10% with code from TUK):

medichecks.com/products/com...

and this is the information from St Thomas's hospital, click on "Ordering Info" tab to see how to go about the test, no idea of cost

viapath.co.uk/our-tests/act...

Dandelions profile image
Dandelions in reply toSeasideSusie

Thanks again!🙂

Dandelions profile image
Dandelions

Thank you for all this SlowDragon and Seaside Susie!

I felt a little bit overwhelmed this morning reading it all. I thought I had my tests done now and could start looking for solutions. But I'm finding out that's not where I am yet.

I didn't enjoy my last doctor's appointment (being told it's in my head, having to persuade professionals to take tests etc), so going back to ask for more tests is not something I'm looking forward to! There's a 6-8 wks waiting time for an appointment. Longer if I want to choose the GP. And I can't start taking any supplements till then. And you're right after that wait they might full well refuse to do the tests anyway, because to the doctor it all looks within range. So it feels deflating at the minute.

But..I've cleared my mind a bit. I might not be there yet, but I have been moving forward. So will just continue with the next step..and then the next step..

So I need:

Full Iron panel

Pernicious aneamia

Coelic test

Vitamin D test

Can you explain to me, please, why I need full iron and pernicious anaemia? Is Vit B12 and Ferritin not sufficient?

They did take full blood count. Is that relevant?

blood count results
SeasideSusie profile image
SeasideSusieRemembering in reply toDandelions

Can you explain to me, please, why I need full iron and pernicious anaemia? Is Vit B12 and Ferritin not sufficient?

The full iron panel will test serum iron, saturation percentage, total iron binding capacity and ferritin. Testing ferritin alone cannot diagnose iron deficiency. The full iron panel, particularly the serum iron and saturation, will show iron deficiency.

Your full blood count doesn't show anaemia so you could have iron deficiency without anaemia, but you could just have low ferritin so you need the iron panel to determine if you have iron deficiency.

I have explained above about what pernicious anaemia is. It is just one cause of B12 deficiency. If you have PA and can't absorb B12 from food then you must get it another way, with PA it's generally B12 injections for life. Other causes of B12 deficiency might be successfully treated with oral supplements.

Dandelions profile image
Dandelions in reply toSeasideSusie

Okay, this makes sense as well. Thanks for sharing all your knowledge. I know what to do now. And it does help to have a plan!

SlowDragon profile image
SlowDragonAdministrator in reply toDandelions

Suggest you get vitamin D tested yourself here

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Full iron panel test available via Medichecks if GP is unhelpful

Meanwhile working on improving low iron levels by increasing iron rich foods in diet

Dandelions profile image
Dandelions in reply toSlowDragon

Thank you, SlowDragon.

I'm booked in at doctors on Monday. Vitamin D and full iron is definitely on the list to ask for. I'm prepared with notes and all the info you and SeasideSusie have provided me with. 🤞

I'll test my self if GP doesn't help.

SlowDragon profile image
SlowDragonAdministrator

B12 and folate

have you now started on separate B12 supplement?

At least a week after starting B12 adding a daily Vitamin B complex

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 B12 supplement as well as a B Complex (to balance all the B vitamins)

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

or

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

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...

healthunlocked.com/thyroidu...

Note that improving folate when B12 is very low is not a good idea. Taking folate before B12 is good enough can lead to severe neurological problems.

en.wikipedia.org/wiki/Subac...

It is vital if you intend to supplement both B12 and folate that B12 is started a week before the folate.

low folate

A week or so after starting B12 supplement

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 

chriskresser.com/folate-vs-...

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 

If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement

amazon.co.uk/Yipmai-Liposom...

or available as Vitablossom brand here

hempoutlet.co.uk/vitablosso... &description=true

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 methyl folate supplement and continue separate B12

Retest full thyroid and vitamin levels 3-4 months after improving all four vitamins

Always test thyroid early morning around 9am latest

Dandelions profile image
Dandelions in reply toSlowDragon

That's a lot of helpful information. Thanks.

No I haven't started B12 supplements yet. The doctor denied my request for pernicious aneamia test by saying "see how you feel after Vit D supplements. Also supplement with iron if you want. If symptoms persist, we'll see." So I have been holding off until I got this both sorted.

I think you said to not supplement Vit B12 until you have done PA test?

I have been feeling quite a lot better to be honest. But it's so long ago I felt 'normal' that I I'm not sure if this is that. But because my brother has B12 issues, testing would relief my worries.

Is PA something that you test for once and then will always know if that's what you have? (Similar to thyroid antibodies?) Or can you develop it at some point? And potentially need re-testing in the future?

SlowDragon profile image
SlowDragonAdministrator in reply toDandelions

So GP won’t test for Pernicious Anaemia

It’s an expensive test and often unreliable

Strongly recommend you just start supplementing

If you don’t have PA supplements will definitely help improve levels

Start with separate B12 first

natureprovides.com/products...

After week or so add daily vitamin B complex

Dandelions profile image
Dandelions in reply toSlowDragon

Ah I see. I saw it was expensive £280 at Medichecks. (medichecks.com/products/com... Hence I was going to bug my doctor for it again.

But is there any point in testing for it privately when it's often an unreliable test?

If testing is not being done, I'm assuming diagnosis is often made by supplementing and re-testing if that raises B12 levels instead, is that right?

SeasideSusie when you have a bit more energy, could I hear your thoughts too please. I think you advised me last time to not start supplementing until I had a test done.

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