Low T3 Low T4 and very Low TSH: Can anyone please... - Thyroid UK

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Low T3 Low T4 and very Low TSH

Angie33 profile image
15 Replies

Can anyone please help me?

I am at my wits end trying to get my head around this under active thryoid situation. It has been over 2 years now. I have changed medicine a few times. Now 5-6 weeks on metavive as I got nowhere with thyroxine or T3. 6 weeks on metavive and my results are as follows:

T3 - 3.9 NHS range - 2.4 - 6

T4 - 8.6 " " 8.0 -19.1

TSH - 0.01 " 0.35 - 4.94

I would definitely function better at the mid - high end of T3 and T4 levels. My energy levels are in the gutter just now. However, I am led to believe if your TSH is undetectable, it is dangerous. This effectively means I can't increase my meds and have to stay at the low level of T3 and T4 :-(

Having a low day of trying to get my head around this (feels relentless) and not sure which way to go now.

Do people find NDT's are better? If so, which ones?

Thank you

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15 Replies
SlowDragon profile image
SlowDragonAdministrator

On NDT, any dose of T3 …..TSH is almost always suppressed and may take very long time to change….or might not change at all …TSH can become stuck if been suppressed a long time

Always test early morning

Day before test split Metavive into 2 smaller doses with last dose 8-12 hours before test

Is this how you did test

Most important results are always Ft3 followed by Ft4

ESSENTIAL to have optimal vitamin levels

What are most recent vitamin D, folate, ferritin and B12 levels

What vitamin supplements are you taking

Do you have Hashimoto’s and are you on strictly gluten free/dairy free diet

Angie33 profile image
Angie33 in reply toSlowDragon

Hi, thank you for your advice again :-) much appreciated.

I did get my test early in the morning and the day before there was a good 12 hours without any metavive.

My folate, vitamin levels etc have all been tested with an advanced thyroid test through medichecks. All good.

I'm left thinking with metavive helping me in the past that it must be the new ingredient that my body doesn't like. Although there is no swelling, or adverse effects. Just that the meds are not so effective. I feel as if I am trying to fine tune an orchestra - what a challenge eh

SlowDragon profile image
SlowDragonAdministrator in reply toAngie33

You could try SMALL dose increase and retest again in another 6-8 weeks

Do you split Metavive as 2 doses per day

I would agree with pennyannie …..likely too many drastic changes too quickly

Angie33 profile image
Angie33 in reply toSlowDragon

Thank you again 😘 yeah maybe coming off 40 mcg of T3 straight onto metavive II x3 over night could be an issue. Although I was advised this was what I should do. I was on 40 mcg for almost a year. I only upped to 50 mcg for a few days before reducing to 40 mcg again.

I seem to get conflicting advice re my TSH. My GP and endo say if this is untraceable, i.e. below 0.01 it is dangerous. My Naturopathic Physician says to ignore my TSH levels and increase my dose as I am under dosing.

Have you heard of the reverse T3 test?

Interesting artical Dr Jerry Thomspon - One test which is not available on the NHS (but can be done privately) is reverse T3. This is a by-product of T4 to T3 conversion. If conversion is difficult more reverse T3 is produced leading to a vicious cycle as reverse T3 blocks T3 even further. A T3/reverse T3 ratio of less than 10 strongly suggests T3 is needed.

Thank you!

SlowDragon profile image
SlowDragonAdministrator in reply toAngie33

Reverse T3 is only rarely an issue and only an issue if on only T4 (levothyroxine) with high or over range Ft4

healthunlocked.com/search/p...

It’s an extremely expensive test, is sent to USA for processing

Angie33 profile image
Angie33 in reply toSlowDragon

Thank you SlowDragon. Good to know! :-)

Do you think being on HRT (which I wasn't on when previously on metavive) could play a part in my TSH levels?

Stourie profile image
Stourie in reply toAngie33

hi, my tsh has been 0.01 for about 12 years so I wouldn’t say that it’s dangerous. It’s just doctors who put that out there. It’s different if you’re hyper but not for hypos unless of course it doesn’t suit you. Jo xx

pennyannie profile image
pennyannie

Hey there Angie :

Looking back quickly I read 2 months ago you were on 50 mcg T3 and still feeling drained - thyroid hormones take time - and maybe it's too many changes too soon.

The TSH was originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and was never intended to be used once the person, was a patient and taking any form of thyroid hormone replacement as then you dose and monitor on the Free T3 and Free T4 with T3 being the most important reading.

Taking any thyroid hormone replacement containing T3 will likely suppress/lower your TSH , being optimally medicated can produce a suppressed TSH- the guidelines are not fit for purpose.

Yes, a low suppressed TSH when not on any form of thyroid hormone replacement can be seen in a person who is hyperthyroid - but once diagnosed hypothyroid - you can't become hyperthyroid - though you could be over medicated and then your T3 would be over range and your dose adjusted accordingly.

No thyroid hormone works well until your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal.

I'm now self medicating and 5 years into Natural Desiccated Thyroid and it is the best option for me - I'm Graves and post RAI thyroid ablation -

Are you still with this endo who wanted you off the T3 Liothyronine or going forward self medicating ?

Angie33 profile image
Angie33 in reply topennyannie

Thank you for such a detailed and informative response. Much appreciated. That is great you are doing well and self medicating.

I was on 40 mcg of T3 for the best part of a year but as my TSH was 0.01 again, I was unable to increase my dose despite my T3 only reaching 4.6.

I think I'll take an additional metavive I on top of my metavive II x 3 daily and see how I get on and wait another 6 weeks. I can't believe how long this all takes. I am envious of those who take thyroxine with no issue.

Noelnoel profile image
Noelnoel in reply toAngie33

My TSH on Metavive is suppressed and is something I ignore. Personally I get on better with a mix of both porcine and bovine Metavive because on porcine alone my FT4 is low. Introducing bovine has helped raise it

I’m currently on:

Met pro x 1, Met lV x 1 + 0.25 capsule (am)

Met lV x 0.25 capsule (bedtime)

This is equivalent to:

Met l x 4 (porcine)

Met lll x 3 (bovine)

Adrenavive (cortex only) x 1 (am)

At the moment I can’t tolerate thyroid replacement without adrenal support

grumpyold profile image
grumpyold

In response to the last question in your post.......personally, I felt amazing on Armour. Self sourced and self funded. I only stopped taking it because I could no longer afford to continue.

No idea what what my bloods were because I didn't test. (It was a long time ago when private testing wasn't readily available, like it is now.)

Just went on how I felt. 3 grains seemed to hit my sweet spot.

Angie33 profile image
Angie33 in reply togrumpyold

Thank you! I have read over the past year or so that a few people seem to be happy with Armour, which is encouraging. I was ready to jump onto this but after reading earlier replies, I feel I maybe need to stick to metavive for a little longer. I just thought I'd get a feel for where I'd be at with it after 6 weeks. In the meantime I need to focus on my sanity. I'm usually a very active person. I'm glad you found something which works. A godsend!!

Kapuna profile image
Kapuna

You are not alone. There are few doctors who have recognized that their “Gold Standard” TSH test does not work for many of us who have thyroid disorders. My TSH is <.02 and my T3 and T4 tests are in the normal range. I feel great and do not have hyperthyroid symptoms. I will be working with the endocrinologist to see if they can find anything wrong.

Check with other family members to see if they have the same concerns. My mother became very hypothyroid and was miserable because her doctor lowered her meds. It seems the problem is genetic but it’s difficult to get anyone to listen.

Angie33 profile image
Angie33 in reply toKapuna

Thank you Kapuna! I actually spoke to a different consultant today. A qualified GP who now goes down the holistic route.. he explained how it is unusual to have a very low TSH as well as low T3 and T4. He said I need to take iodine drops and selenium for starters. This should increase my TSH, thus allowing me to increase my thyroid meds. I will also look in my liver to see if it's sluggish. They are linked.. so refreshing and makes sense. So much conflicting advice out there, no wonder we get confused. I'd rather get more tests opposed to just increasing my meds just now. The saga continues.. Oh my mother has an under active thyroid too. She is lucky, thyroxine works for her.

tattybogle profile image
tattybogle in reply toAngie33

Have you done plenty of research on iodine Angie ? . eg have you been tested and found to be deficient ? Be aware ,Iodine can sometimes worsen hypothyroidism.

healthunlocked.com/thyroidu... /iodine-a-collection-of-useful-information

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