T3: Hi new to forum please could someone advise... - Thyroid UK

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T3

Arty8 profile image
17 Replies

Hi new to forum please could someone advise how to get hold of T3 I am feeling worse without it and my hypothyroid has gotten worse without it thanks

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Arty8
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17 Replies
SlowDragon profile image
SlowDragonAdministrator

Can you give a bit of background info.

When diagnosed, what taking, plus recent tests results

What about vitamin D, folate, ferritin and B12. Have these been tested recently, if so please add results too

Do you have Hashimoto's (high antibodies)

Have you been on T3 via NHS and had it stopped?

Arty8 profile image
Arty8 in reply toSlowDragon

VITAMIN D 15.2 (<25 SEVERE DEFICIENCY)

FERRITIN 11 (15 - 150)

FOLATE 1.2 (2.5 -19.5)

VITAMIN B12 96 (190 - 900)

SlowDragon profile image
SlowDragonAdministrator in reply toArty8

How long since you got these results and are you now on any supplements to correct this, if so what

How long have you been only on 25mcg Levo ? Who reduced it and what dose reduced from

I am linking SeasideSusie , greygoose , Clutter and humanbean into this

See SeasideSusie detailed vitamin supplements advice eg

healthunlocked.com/thyroidu...

Arty8 profile image
Arty8 in reply toSlowDragon

No supplements and results done 2 months ago and been taking 25mcg levo since February 2016 and it was reduced from 75mcg Levo and 12.5mcg T3 to 25mcg

SlowDragon profile image
SlowDragonAdministrator in reply toArty8

Can you also post this plus brief outline on PAS Unlocked, they are experts on B12 and folate

You are highly likely to need B12 injections. Do NOT supplement folic acid or folate first.

healthunlocked.com/pasoc

Arty8 profile image
Arty8 in reply toSlowDragon

Diagnosed 2012

Taking 25mcg levothyroxine

TSH 6.2 (0.2 0 4.2)

FREE T4 12.8 (12 - 22)

FREE T3 2.1 (3.1 - 6.8)

TPO ANTIBODY 347 (<34)

TG ANTIBODY 255.3 (<115)

Was on T3 through NHS and had it stopped despite it helping

SlowDragon profile image
SlowDragonAdministrator in reply toArty8

So are you being managed by an endo or left with GP

You are seriously under medicated and vitamins are really dire

Has GP seen these results and what is happening?

You need an urgent appointment tomorrow to sort this

Did one endo start you on T3 and then a different one stop it.

Arty8 profile image
Arty8 in reply toSlowDragon

Left with GP and GP hasn't seen results have got appointment today to sort everything out and I stopped the T3 because I was fed up with endo constantly saying I was overtreated with suppressed TSH and in range hormones so she said ok then let's reduce to 25mcg

SlowDragon profile image
SlowDragonAdministrator

Your antibodies are high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

Did any medic actually explain this? I doubt it, they don't understand it

We have had at least two a day turn up on here, gaving had same disastrous treatment

There's a battle going on with endocrinologists. Those that recognise we need T3 and those that don't or want to follow the campaign to get us off T3.

There is currently a 10pence per patient incentive to get people off T3 in one CCG. Unbelievable

Anyway Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

It isas much a disease of the gut at it is of the thyroid. But most endo's know little about the gut

About 5% with Hashimoto's are coeliac, but over 80% of us find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Great film definitely shows why just testing TSH is inadequate and why it's complex

drbradshook.com/understandi...

You are going to need to step levo back up in 25mcgs steps, waiting 6 weeks, testing and increasing

Supplementing vitamins too and gluten free will help gut heal

But once more stable adding small amount T3 back in is likely to be necessary

Assume you know to take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

Arty8 profile image
Arty8 in reply toSlowDragon

No I didn't have it explained I have Hashimotos I thought endo or GP would explain this thanks

SeasideSusie profile image
SeasideSusieRemembering

Arty8 If you are still around and want some help, if you answer the questions asked by SlowDragon we can take it from there :

So are you being managed by an endo or left with GP?

Did one endo start you on T3 and then a different one stop it.?

How long since you got these results (referring to vitamins and minerals) and are you now on any supplements to correct this, if so what?

How long have you been only on 25mcg Levo ? Who reduced it and what dose reduced from?

I am happy to respond but would like to have the answers so I can post the relevant information.

Arty8 profile image
Arty8 in reply toSeasideSusie

Left with GP and GP hasn't seen results have got appointment today to sort everything out and I stopped the T3 because I was fed up with endo constantly saying I was overtreated with suppressed TSH and in range hormones so she said ok then let's reduce it to 25mcg

Arty8 profile image
Arty8 in reply toSeasideSusie

No supplements and results done 2 months ago and been taking 25mcg levo since February 2016 and it was reduced from 75mcg Levo and 12.5mcg T3 to 25mcg

SeasideSusie profile image
SeasideSusieRemembering in reply toArty8

Arty8 If you haven't already had your GP appointment, here are some things that need discussing.

Your nutrient levels are extremely seriously deficient, they must not be ignored and I can't understand why nothing has been done so far considering it's 2 months since the tests were done. I hope you are seeing a different GP, get treatment for these sorted and then give serious consideration to making a formal complaint against the GP who has ignored these results.

VITAMIN D 15.2 (<25 SEVERE DEFICIENCY)

As you can see, you are severely deficient and you need loading doses of D3 - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses, do not accept 800iu, you must have the loading doses. Once these have been completed you will need a reduced amount (not a paltry 800iu) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose for life which may be 2000iu daily and you will have to buy your own as all you'll be prescribed is 800iu, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

FERRITIN 11 (15 - 150)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You need an iron supplement and because you are below range an iron infusion is preferable as it will raise your level within 24-48 hours whereas tablets will take many months.

You can also help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

You also need an iron panel and full blood count to see if there is any anaemia.

If given iron tablets take each one with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

**

FOLATE 1.2 (2.5 -19.5)

VITAMIN B12 96 (190 - 900)

I cannot emphasise enough how serious this is. Please go straight over to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc Check for signs of B12 deficiency here b12deficiency.info/signs-an... and include them in the information you post on the PA forum, along with Folate, B12 and ferritin results, along with any tests/results you may already have for anaemia.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And 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."

I think you need testing for Pernicious Anaemia and I think you are going to need lifelong B12 injections.

SlowDragon profile image
SlowDragonAdministrator

Have you been to see GP and increased your Levo by 25mcg ?

What about getting your vitamin levels higher. Has GP prescribed anything

Once Levo us back up yo better level and vitamins improved then very likely you will need small amount of T3 too

If you email Louise at a Thyroid Uk for list of recommended thyroid specialists, many are T3 friendly. A private prescription enables cheap T3 from Europe either online or if you have helpful Pharmacist they can order toon

Louise.roberts@thyroiduk.org.uk

Arty8 profile image
Arty8 in reply toSlowDragon

Am seeing GP today to discuss

SlowDragon profile image
SlowDragonAdministrator in reply toArty8

You are extremely unwell with these results, your GP should have taken immediate action.

Come back with new post after your appointment to update on what they propose

Vitamin B12 is seriously low

I would expect you have low B12 symptoms

b12deficiency.info/signs-an...

Post all these vitamin results on

healthunlocked.com/pasoc

They will advise recommended course of action on B12 and folate

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