T3 or Not T3?: Hi Everyone, 1st post for me. Endo... - Thyroid UK

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T3 or Not T3?

Wilby23 profile image
12 Replies

Hi Everyone, 1st post for me. Endo agreed to a 3 month trial of T3 in Dec 16, then promptly left the hospital. Had to wait for new Endo to start in May who said I didn't need it, even though I had not had a baseline FreeT3 test so nothing to compare to.

TSH 0.037 miU/I

Free T4 14.7pmol/l

Free T3 5.3 nmol/l

Vit D3 63 nmol/l

B12 226 ng/l

Folate 9.5 ug/l

Ferritin 50 ng/ml

Weight creeping up, exhausted, Brillo pad where my hair used to be, not sleeping, you all know the story.

He also tried to scare me by saying ' do you really want the short term gain of T3 and later in life you will suffer with your heart and bones collapsing?

Endo signed off conversation saying I needed willpower and lots of exercise to get my weight down. Now why didn't I think of that!!

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Wilby23
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shaws profile image
shawsAdministrator

Do you have the ranges for your results. The figures are in brackets after the results. Labs differ in their machines so have different ranges.

Do the blood tests above include you taking T3 as well as T4?

People who tell lies in order to force people into following their unscientific advice shouldn't try to frighten patients into threats of osteo of heart.

This is from a lady doctor:

healthunlocked.com/thyroidu...

All of your vitamins/minerals are too low and need to be increased. I'd see GP about increasing these. B12 for instance should be around 1,000 to try to prevent dementia. I doubt he will do anything about B12 unless you had pernicious anaemia. I'd pop over to the Pernicious Anaemia Society and ask them about B12.

Wilby23 profile image
Wilby23 in reply to shaws

Thanks Shaws and to everyone replying to my post, here are my blood test ranges taken at the end of May which were done taking T4 only, didn't take any the day before and was an early morning test

TSH 0.037 miU/I

(0.38 - 5.33)

Free T4 14.7pmol/l

(7.00 - 16.00)

Free T3 5.3 nmol/l

(3.5 - 7.8)

Vit D3 63 nmol/l

> than 50 adaquate

B12 226 ng/l

(150 - 900)

Folate 9.5 ug/l

(3.1 19.9 )

Ferritin 50 ng/ml (12-280)

Cortisol 382 nmol/l (185 - 624)

I take BetterYou Dlux Vitamin D3 oral spray 10,000IU a day, spray into mouth on cheeks. This seems to have helped in bringing my level up from 42 last year. I have also just started taking BetterYou B12 boost 1200ug a day.

shaws profile image
shawsAdministrator in reply to Wilby23

Your results look good and you are obviously have no problem in converting levo to T3. Both are good.

SeasideSusie profile image
SeasideSusieRemembering

I'm a bit puzzled. Did the original endo put you on T3 without doing a FT3 test?

What meds were you taking when the test was done that produced the above results?

As Shaws has said, B12 is far too low, anything under 500 can cause neurological problems.

Ferritin is too low too, it needs to be a minimum of 70 for thyroid hormone to work, ideally half way through it's range.

Wilby23 profile image
Wilby23 in reply to SeasideSusie

Thanks Seaside Susie. Yes, it was surreal as I was ready for battle with the Endo , did my research, went in with my notes and was totally disarmed. He was lovely, he said although he looks at the 'facts' he also listens to the patient as what is normal for one person is not the same for another. He started me on 3 months T3 10mcg a day. I did start to feel a bit a bit brighter, sleeping better, so thought I'd cracked it!! There was a bit of a tussle as to who should prescribe it though. Endo gave me a letter to take to GP to get prescription. Surgery 'lost' the letter (luckily I took copies ha ha !!) GP said Endo had to prescribe and vice versa, for 2 weeks. Then Endo sent me a handwritten script to take to chemist. I didn't get a follow up appointment so called his secretary, to be told he was leaving, couldn't have an appointment until new Endo arrived about 6 weeks later. When I did get an appointment he wouldn't even entertain T3 because it's of no benefit. Now I don't know if I want it because I can't have it (unless I self medicate) or because I don't need it. Endo will now see me in November but I have had a telephone consultation with him this week, still won't budge on T3.

What can I do to get my ferritin up?

shaws profile image
shawsAdministrator in reply to Wilby23

It will take some weeks for you to settle into T4 only and if you get unpleasant symptoms you can re-asses the situation.

Many do fine on levothyroxine as long as they are on an optimum dose so hope it suits you too.

I think the Endo was a bit off hand in his response re 'antibodies'. It is best if you do know then when you have a rush of antibodies attacking your gland you will know the reason for it. He is being smart by not explaining as the prescribing for hashi's is exactly the same as for hypothyroidism.

Your low vitamins/minerals have to be sorted out.

SlowDragon profile image
SlowDragonAdministrator

Do you have Hashimoto's (high thyroid antibodies?)

If you do gluten free diet may help, plus improving low vitamins (classic sign of hypo/Hashimoto's)

Low stomach acid can cause poor absorption too

Other options are to test for DIO2 gene variation

thyroiduk.org.uk/tuk/testin...

Wilby23 profile image
Wilby23 in reply to SlowDragon

Thanks SlowDragon. I don't know if I have Hashimoto's as my antibodies have not been tested. I did ask Endo whilst I was on the ophone to him ' Could I have Hasimoto's?', his reply was 'would it make a difference if I said you did??' I said I wanted antibodies testing so he said he would add it to the next blood test.

I don't have a complete gluten free diet but am trying to steer clear more often than not, could try harder though

I have had my gallbladder out and take tablets for indigestion, I sound like a classic case!!

Why cant the Doctors join up the dots instead of looking at one thing at time. Surely if they a persons history, maybe the lightbulb will go on!!

shaws profile image
shawsAdministrator in reply to Wilby23

Usually, if hypothyroid we we also have low stomach acid, just to complicate matters. Doctor usually prescribes antacids as symptoms are nearly identical.

So we find it best to take Betaine tablets or digestive enzymes in order to help dissolve the food in our stomach as low acid wont do the job.

SlowDragon profile image
SlowDragonAdministrator in reply to Wilby23

Looking at you extremely high dose vitamin D yet not very high result, plus ferritin low and B12 it certainly looks like Hashimoto's.

Improving low stomach acid with Apple cider vinegar or betaine HCL might help

Search low stomach acid on here - masses of posts

But strictly gluten free is also likely to help especially if you have already noticed a link - it does need to be 100% to be effective

50% at least of Hashimoto's trouble is gut, gluten or vitamins and endocrinologist tend to have little idea or knowledge about any of this. "Not their area"

In part i think gut issues are due to still having low body temp on T4 only. Enzymes are probably very temperature sensitive

Endo's often don't recognise the gut connection so see no reason to test for antibodies

silverfox7 profile image
silverfox7

Just to indicate the problem if you don't add ranges my range upper limit for FT3 is 5.7 but the one most seen is 6.8 so on mine your result looks good but on the 6.8 room for improvement

Wilby23 profile image
Wilby23 in reply to silverfox7

Thanks Silverfox, just added ranges to another post

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