Opinion on test results please (First post) - Thyroid UK

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Opinion on test results please (First post)

TheBoysMum profile image
9 Replies

Hello. I’ve been looking at this forum for some time and have read posts & informative responses from you knowledgeable people. I’ve been feeling pretty down lately, tired all the time, always cold, cotton wool brain & headaches etc. I have annual bloods done - always in the “normal range” but as you know only TSH & free T4 are tested, so I decided to get a kit from Medichecks and have the following results.

I was diagnosed in 1993 with hypothyroidism and have been ‘stable’ on 100mcg levothyroxine (accord brand) since 2007. I did the self-test at 7:45am, 24hrs after taking my med. I do not take any vitamin supplements. I would be very grateful for your opinion on the result.

(Thank you to Decant for the calculator)

TSH 3.100 mIU/L (0.27 - 4.2) 72.0%

Free T4 (fT4) 19.4 pmol/L (12 - 22) 74.0%

Free T3 (fT3) 3.7 pmol/L (3.1 - 6.8) 16.2%

T4:T3 Ratio 5.243 

C-Reactive Protein (CRP) 3.200 mg/L (≤ 3)

Vitamin D 60.2 nmol/L (50 - 250) 5.1%

Ferritin 230.00 ug/L (30 - 332) 66.2%

The Medichecks measurements of the following differ from the calculator so here are those results

Thyroglobulin Antibodies 15.90 kIU /L (Range 0 - 115)

Thyroid Peroxidase Antibodies 58.3 kIU/L (Range 0 - 34)

Vitamin B12 - Active 49.9 pmol/L (Please note update to reference range 29 Jul 2024) (Range

> 37.5)

Folate - Serum 21.7 nmol/L (Range > 7)

Thank you for reading.

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TheBoysMum
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9 Replies
FallingInReverse profile image
FallingInReverse

I just wanted to send a warm hug and a welcome to this forum.

You will get excellent detailed feedback, as there are a lot of opportunities for improvement based on your bloods.

Great bio/profile- so many of your symptoms match mine 2 years ago before I found this forum. And in the year since I’ve been here, I have slowly and methodically, with much patience, clawed my way back to feeling functional. I’m not 100% yet, but pretty darn close.

And also - we have all been there and I’m sorry your doctors have treated you the way they did. They were wrong just like you suspected! It’s just the world we are living in right now. Big hugs to you 🤗!

TheBoysMum profile image
TheBoysMum in reply to FallingInReverse

Thank you for the warm welcome & I’m feeling the hugs. 🥰

pennyannie profile image
pennyannie

Hello TheBoysMum and welcome to the forum :

Once on any form of thyroid hormone replacement it is recommended to doctors that the TSH be maintained at least under 2 - with many of us generally feeling better when the TSH is down under 1 and towards the bottom of the range, especially if with a thyroid AI disease.

Hypo symptoms start reappearing when when TSH creeps over 2 -

and years ago hypothyroidism was diagnosed and treatment initiated when the TSH went over 3 - so to be on thyroid hormone replacement and have a TSH over 3 - clearly not correct.

We generally feel best when taking T4 only medication when the T4 is in the top quadrant of its range with the T3 tracking just behind at around a 1/4 ratio T3/T4.

The accepted conversion when on T4 monotherapy and once the T4 is up in the top quadrant of its range is said to be 1 / 3.50 - 4.50 - T3/T4 with most of us feeling at our best when we come in this little ratio at 4 or under.

So as you can see from your own results whilst your T4 is almost in the top quadrant your T3 is lagging behind with your conversion of T4 into T3 compromised at 5.2 and wide of centre.

T4 is a pro-hormone that needs to be converted in the body into T3 the active hormone that runs the body and it is too low a level of T3 that causes all the symptoms of hypothyroidism.

Conversion of T4 into T3 within the body can be compromised by low levels of the core strength vitamins and minerals -

I now aim to maintain my ferritin at around 100 - folate at around 20 - active B12 125 ( serum B12 500 ++ ) and vitamin D at around 125.

Down regulation of T4 into T3 can also be caused by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing.

So - it's never a done deal and goal posts can move - so we need to shore up some of these core strength vitamins and minerals, especially B12 and vitamin D.

Your body 's inflammation biomarker - CRP - is high and over its range - showing your body under a level of stress and your ferritin looks high - though in range - which can be caused due to inflammation levels ?

You have some antibody interaction and over range TPO readings so this is a positive for a thyroid auto immune disease commonly referred to as Hashimoto's and long term this AI disease progressively damages and destroys your thyroid with you needing more thyroid hormone support and likely a T3/T4 combo of hormones to restore thyroidal balance.

Many forum members with Hashimoto' experience stomach/gut issues and food intolerances and it makes sense -

first - before you change anything - to get tested for celiac and pernicious anemia as these are further AI disease that tend to run hand in hand, and can also impact T3/T4 conversion, health and well being.

You might like to dip into Dr Izabella Wentz who writes as thyroidpharmacist.com as she too has Hashimoto's and is well respected and followed by many forum members.

TheBoysMum profile image
TheBoysMum in reply to pennyannie

Thank you pennyannie for your reply. That is a lot of information which I will read & re-read and digest. I have an appointment with my GP next week so I will be making notes, armed with all your information.

pennyannie profile image
pennyannie in reply to TheBoysMum

Okey doke - yes - there are several layers there to unpack and understand - and since they all impact on each other need mentioning in the round - and please ask if anything doesn't make sense to you.

We are a patient to patient open forum and most of us have been in a similar situation ourselves and why I come back on to support others and pay back the help and support I found some years ago.

Thyroid UK - the charity who support this forum is where you can also start reading up on ' all things thyroid ' and also have a a page detailing all the symptoms of hypothyroidism - you might find this an interesting tick box exercise to also focus on - thyroiduk.org

SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

You have been badly let down by medics

TSH is too high

Ft3 dire

Very poor conversion rate

Extremely low B12

Low vitamin D

High thyroid antibodies confirms your hypothyroidism is autoimmune - Hashimoto’s

Low B12

Are you vegetarian or vegan?

If not really GP should test you for Pernicious Anaemia before starting on any B12 supplements

But if they won’t, you will need to just start supplementing

Low B12 symptoms

b12deficiency.info/signs-an...

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

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

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

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

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

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

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

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 supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

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

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 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 until Active B12 at least over 70

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

At least 2 weeks after starting vitamin B complex then look at starting Vitamin D

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 when supplementing

Can test via NHS private testing service

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 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...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Gastris results in low B12

vinmec.com/eng/article/vita....

Chronic atrophic gastritis leads to malabsorption of vitamin B12 from food due to reduced intrinsic factor production, leading to megaloblastic anemia (a type of macrocytic anemia) and neuropathy menorrhagia. Folate deficiency can lead to a similar clinical picture.

Have you had coeliac blood test done via GP?

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth trying

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

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

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Slowly work through this list

1) improving all vitamins

2) work out which brand of Levo suits you best and always get this brand

3) trial gluten free/dairy free

4) retest thyroid levels 8 weeks after last change

Likely to be ready for dose increase in Levo and see conversion rate improvement

TheBoysMum profile image
TheBoysMum in reply to SlowDragon

SlowDragon-thank you so much for all the above information. I have a lot of reading and research to do. I have an appointment next week with a GP (never seen her before, she’s new to the practice) so will go fully armed with information, and will ask for a Pernicious Anaemia test.

I am neither vegetarian nor vegan. I had a coeliac test quite a few years ago that came back negative but I will ask for another test. I’ve played around with going dairy free and gluten free but never seriously as I thought it might be all in my head. Everything you say makes sense now.

My head is definitely mashed now so will take time to read & digest it all.

SlowDragon profile image
SlowDragonAdministrator in reply to TheBoysMum

I would try gluten free first as it’s slightly easier

Can take a year or so to notice brain fog improving

Then in 2-4 months after starting GF consider trialing dairy free

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