Underactive thyroid Advice please: Thyroid runs... - Thyroid UK

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Underactive thyroid Advice please

Rachel20 profile image
17 Replies

Thyroid runs in all our family..for quite a while have been feeling quite dreadful...i tool a thyroid test and my tsh level is at 4.73.Can someone tell me if they have been diagnosed and on medication for underactive throid with these test result figuresThank you in advance....

TEST RESULTS

TSH...4.73mu/L

THYROXINE...12.9pmo/L

TRIODOTHYRONINE...4.4pmo/L

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Rachel20 profile image
Rachel20
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17 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Just testing TSH is completely inadequate, but frequently all NHS will test

Looking at your other posts, you have endometriosis?

Endometriosis and autoimmune thyroid disease (hashimoto’s) are frequently linked

preventmiscarriage.com/endo...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus both antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes both antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

come back with new post once you get results

Are you currently taking any vitamin supplements?

Rachel20 profile image
Rachel20 in reply toSlowDragon

Wow thank you for info.Had no idea endo and thyroid can be linked.I did have other test resukts that i have just added above..but these are just tsh t3 and t4..not on any vitimins but have had very bad vitamin d years ago.Doctor said it was the lowest she had seen at just 9.I suppose i really ahould be taking these.I paid for a private test as my old gp only ever testes the tsh levels and i read you need the 3 together

SlowDragon profile image
SlowDragonAdministrator in reply toRachel20

Vitamin D

So presumably you were prescribed LOADING dose vitamin D

That’s total of 300,000iu over 6-8 weeks

Vitamin D should have been retested at end of course

And you should have been advised to self supplement every day going forward and test annually

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 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...

Interesting article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Rachel20 profile image
Rachel20 in reply toSlowDragon

Wow Thank you so much...will take my time reading all this wonderful advice.Cant thank you enough.Thank goodness for this site and wonderful people like yourself. Yes my doctor stopped prescripton when levels grew. Have never been tested again x

SlowDragon profile image
SlowDragonAdministrator

What’s the range on Ft4 sand Ft3

Rachel20 profile image
Rachel20 in reply toSlowDragon

Test..mu result from monitor my health say my results indicate i may have a mild form of underactive thyroid known as subclinical hypothyroidism.That this normally does not need treating at this stage but indicates i should have my thyroid hormones checked regularly and they recommend i test again in 3 to 6 months.Its just that i have been feeling dreadful for a year now and if i feel like this because it may be thyroid i would rather not wait.Have felt the cold for long time now along with great tiredness everything it such an effort.And with quite worrying weight gain that came on really quickly.I do not each much and diet has not changed

Test
SlowDragon profile image
SlowDragonAdministrator in reply toRachel20

FT4: 12.9 pmol/l (Range 12 - 22)

Ft4 only 9.00% through range

FT3: 4.4 pmol/l (Range 3.1 - 6.8)

Ft3 struggling to maintain levels 35.14%

TSH is not reflecting how low your Ft4 is

Low vitamin levels tend to lower TSH (all that most medics look at)

Highly likely with such low Ft4 that your vitamin levels are poor or terrible

Rachel20 profile image
Rachel20 in reply toSlowDragon

Thank you so much for all the links and help you have sent me.It really is much appreciated Slowdragon.Do you have any advice on what i should do now based on my result.Does it appear to indicate thyroid do you think .Thank you again.Take care xx

P.s sorry to ask so much of you but i just wondered what it means that. "Low vitamin levels tend to lower TSH (all that most medics look at)" i dont quite understand what that may mean xx

SlowDragon profile image
SlowDragonAdministrator in reply toRachel20

Next step

Get vitamin D, folate, ferritin and B12 levels tested and most importantly BOTH TPO and TG thyroid antibodies

Cheapest is Medichecks

medichecks.com/products/adv...

ALWAYS test thyroid levels early morning, ideally just before 9am

Likely to see your vitamins are low or terrible

Being hypothyroid frequently results in developing low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

Improving low vitamins is frequently first step to getting diagnosed

If Ft4 was under 12 your GP would be obligated to start you on levothyroxine

Similarly if TSH was over 5, with symptoms and especially if you have high thyroid antibodies, starting on levothyroxine

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Regenallotment profile image
RegenallotmentAmbassador

hey, I hear you, you must feel awful.

I had a TSH (same range as yours) 4.2, 4.8 and then when I followed the time of day advice here from @slowdragon I got a 5.5 which allowed me to push the GP to prescribe, wave advice and guidance from here at a string of locums who thankfully prescribed increase after increase.

I was going to look when my first plea for help was…. Must be over 12 months I think. Started on 25mcg Levo, now on 125mcg. It’s an all consuming feat of determination and endurance to advocate for yourself, eat right, take all the right supplements but it does get better and easier.

wishing you well 🌱🦋🌱

Rachel20 profile image
Rachel20 in reply toRegenallotment

Thank you so much ...so glad to hear that you have finally gotten the help you needed.Take care

Charlie-Farley profile image
Charlie-Farley in reply toRegenallotment

Well said Regenallotment!

Charlie-Farley profile image
Charlie-Farley

Hi Rachel20

I too followed forum advice, quite a bit of it given by Slowdragon.

I too am doing well, but as Regenallotment says - put in the work. Can't emphasis enough just read as much as you can work through the links provided (I did this too) put advice into practice and read others posts and bios this will really help you in building your knowledge.

It does get better, but be prepared to advocate for yourself (GPs don't learn much about the thyroid and in a few months you will know more).🤗

Rachel20 profile image
Rachel20 in reply toCharlie-Farley

Thank you...Haha yes it seems everyone on here know much more.So good to hear you are doing well.Yes have read so much already thanks to Slowdragons help with all the links.Have definately learnt alot already.So i will keep going..and definately take all this great advice ..take care

SlowDragon profile image
SlowDragonAdministrator in reply toRachel20

Come back with new post once you get vitamin and thyroid results

Members can advise on what supplements you will need

If vitamins are deficient will need to take results to GP and get prescribed

If vitamins are low, but within range down to us to self supplement

Rachel20 profile image
Rachel20 in reply toSlowDragon

Will do Slowdragon..thank you again...so appreciated.Hope you have a lovely day

Regenallotment profile image
RegenallotmentAmbassador in reply toCharlie-Farley

👏 Rightbackatcha 🤗🌱

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