Help with Results/ Advice going Forward - Thyroid UK

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Help with Results/ Advice going Forward

Treeferns profile image
13 Replies

Hi all been an onlooker for some time and I am in need of some assistance, I will try to keep this as short as possible but sorry if I ramble on.

I was admitted to hospital in May22 after a routine checkup as I was not feeling quit right this quickly unfolded into the dreaded widow maker heart attack was blue lighted to hospital for immediate treatment (stent) and panic over no symptoms chest pains or Tv theatricals.

Whilst in hospital recovering I was made aware that my blood tests showed my thyroid levels were abnormal ( Tsh 24 range 0.40-4.90 and FT4 8.9 range 9-19 ) and to discuss with my GP i was started on Levothyroxine 25mg low dose due to heart issues. Shortly after I was seen by a professor of metabolic science to treat underlying lipid disorders ( mixeddislipidemea and Lp(a) ) he also undertook my thyroid treatment due to the link between the 2 also in a previous appointment he was head of the Birmingham Thyroid Clinic so was very reassured I would get both problems sorted, my thyroid symptoms became worse fatigue,weight gain, low mood, low libido, poor sleep which are all still present today 2025 between May22 and November 24 I have had 8 blood tests with Tsh and FT4 included my Tsh has only been in range twice in this time which was my most recent in November 24 ( Tsh 0.79 range 0.40- 4.90 and FT4 12.3 range 9-19 ) the so called expert doesn’t believe in testing for T3 or antibodies and is still of the current view of he believes I am Subclinical and my symptoms are not from my thyroid as it’s now in range????? I am currently on 125mg Levothyroxine (Teva), and take no supplements as have been told by specialist my vit d and iron levels are in range.

I have now decided to try and sort this my self and had some private tests done I have taken the advice / pre test protocols last dose 24hrs before test, test was 8:30am with no food or drink prior. Tests were with Medichecks.

TSH 1.24 (0.27-4.2) FT4 17.5 (12-22) Ft3 4.4 (3.1-6.8)

Thyroglobulin Antibodies 491 (0-115) Thyroid Peroxidase Antibodies 186 (0-34)

Folate 18nmol/L (7-35) Ferritin 166ug/L (30-518)

vitB12 65.8pmol/L (37.5-187.5) vitD 60nmol/L (50-200)

Crap HS 1.99 (0-3)

Any advice would be welcomed including levels, vit levels, optimal thyroid, and autoimmunity as my specialist seems to be from the non believer camp and seems to swerve any chat regarding symptoms, it seems pointless adding previous results as they are only ever tsh or tsh+t4 which from previous reading doesn’t really help.

Thanks for any advice in advance and apologies for the lengthy post.

Lee ( Treeferns)

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SlowDragon profile image
SlowDragonAmbassador

Free T4 (fT4) 17.5 pmol/L (12 - 22) 55.0%

Free T3 (fT3) 4.4 pmol/L (3.1 - 6.8) 35.1%

Shows you have room for increase in Levo

Request increase as trial to (initially) 125mcg and 150mcg on alternate days

Or cut 25mcg in half to get 137.5mcg every day

How much do you weigh in kilo?

I am currently on 125mg Levothyroxine (Teva)

Have you always taken Teva?

It doesn’t suit some people

Only change one thing at a time

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Have you had coeliac blood test, if not get GP to do so as per NICE Guidelines

BEFORE trialing strictly gluten free diet

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

Treeferns profile image
Treeferns in reply toSlowDragon

Hi SlowDragon,

Thank you for the wealth of information and will start to implement some of the changes you have suggested I will look at some supplements and start introducing one at a time as advised hopefully this will start to improve some of my symptoms, it’s difficult at the moment as I am on heart medication which can also produce similar symptoms GP and specialist keep advising they are critical to take so difficult to eliminate I was statin intolerant so I am on an injectable for this now so shouldn’t get the side effects???

I have mostly been on Teva brand so can’t comment on suitability as I still have an extensive symptom list plus my levels have never been stable.

I have already had a testosterone test done and that cam back above the middle range.

My cholesterol has stabilised now so I will placed back into the care of the GP for my Thyroid, regarding my Autoimmune/ Hashimoto’s I believed I would have been Overtly Hypothyroid on first blood test with tsh being well out of range and T4 being just below range am I right in saying this, as the specialist keeps saying I am Subclinical it doesn’t make much difference to me as I am on medication but having a full knowledge matters as by the sounds of things having this seems to be a battle of different opinions between medical professionals something I have experienced already with my heart and lipid problems.

Thank you again it’s the most help and info I have had in the last 2 years and is much appreciated.

TreeFerns.

SlowDragon profile image
SlowDragonAmbassador in reply toTreeferns

regarding my Autoimmune/ Hashimoto’s I believed I would have been Overtly Hypothyroid on first blood test with tsh being well out of range and T4 being just below range

You are correct

You were clinically hypothyroid and now on replacement thyroid hormone

specialist keeps saying I am Subclinical

subclinical means “without symptoms “ …….that’s clearly rubbish as you still have lots of symptoms

Many (most?) people on replacement thyroid hormones find they Ft3 at least 50-60% through range

SlowDragon profile image
SlowDragonAmbassador

vitD 60nmol/L (50-200)

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

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

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
SlowDragonAmbassador

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

Starting with vitamin D, then magnesium, then B12 and lastly vitamin B complex

Retest 8 weeks later

Folate 18nmol/L (7-35)

vitB12 65.8pmol/L (37.5-187.5)

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...

Great reply by @humanbean on B12 here

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 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 and may need 2 per day and/or may need separate methyl folate couple times a week

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 5-6 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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 if last test result serum B12 was below 500 or active B12 (private test) under 70

SlowDragon profile image
SlowDragonAmbassador

also look at testing zinc, selenium and copper

bluehorizonbloodtests.co.uk...

SlowDragon profile image
SlowDragonAmbassador

Also get testosterone tested 2-3 months after vitamin D is at good level

thyroidpharmacist.com/artic...

pmc.ncbi.nlm.nih.gov/articl....

High cholesterol should naturally decrease once thyroid levels are optimal

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Sleepman profile image
Sleepman

Treeferns,I guess with heart issues they had to go slow. You are AI type so levels can swing around ... mine did.

Sound advice as always from slowdragon. Vits and minerals should improve things as well as more levo.

Treeferns profile image
Treeferns in reply toSleepman

Thank you Sleepman thanks for the response it’s nice to know I am around like minded and helpful people.

My levels are all over the place did yours eventually settle.

Thanks again,

Treeferns.

SlowDragon profile image
SlowDragonAmbassador in reply toTreeferns

Getting thyroid levels high enough, getting vitamin levels optimal and frequently strictly gluten free and/or dairy free…….all these can help

With Hashimoto’s we frequently need TSH low, below range…..so that thyroid is switched off to stop levels swinging back and forth

Making slow steady changes

Keeping good records of how you feel on a particular dose/brand Levo

Sleepman profile image
Sleepman in reply toTreeferns

After say 9 months seemed OK and stable. My TSH was 78 so I think I was late onto levo maybe damage mostly all done. I am 2.5 years in and mostly ok for 2 years.

I added T3 as a bit low on my T3 tests but your recent one looks like an OK level compared to your T4. I was top and and over on T4 with low T3.

Hedgeree profile image
Hedgeree

Hi Treeferns,

Welcome to the forum! 🙂

Lots of info from SlowDragon for you look at. Members here are very knowledgeable and experienced with all things thyroid; you've come to a good place.

Treeferns profile image
Treeferns in reply toHedgeree

Hi Hedgeree,

Thanks for the welcome,

Treeferns .

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