Help sourcing T3 please: Could members please PM... - Thyroid UK

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Help sourcing T3 please

7 Replies

Could members please PM me with reliable sources of T3. I've Hashi's and am not converting Levo well, possibly due to having the DIO2 gene mutation, all taking Levo does is raise my T4 but my T3 stays stubbornly low, and I can't get rid of all my symptoms. Have been on Levo for around 10 months now, only on 50 mcg but doctor doesn't want to raise it further as my T4 is near the top of the range. Latest results (done a few days ago):

TSH: 2.99 (0.27-4.20)

Free T4: 21.6 (12.0-22.0)

Free T3: 4.1 (3.1-6.8)

I'm working on raising my ferritin higher before I attempt to add T3 in, it is slowly going up, but I figured it would be wise to start looking into finding T3 sooner rather than later. Thanks in advance.

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7 Replies
shaws profile image
shawsAdministrator

Your doctor should add T3 to your T4 as you have a DI02 gene defect. I shall look at TUK's site for information.

50mcg is a starting dose. I'd drop a note to your GP and say you are now a member of Healthunlocked Thyroiduk.org.uk - the NHS Choices for advice/help on dysfunctions of the thyroid gland and you have been advised that a TSH has to be 1 or lower, with and although your FT4 is high, you don't appear to be converting sufficient T3 from your dose as FT4 is top of range and FT3 should be nearer 6.You need the addition of T3 due to a defective gene.

When someone is diagnosed, the aim is a TSH of 1 or lower - not somewhere in the range.

As information isn't allowed on the open forum, I shall close yours and members will send you a private message if they have information.

I really don't know how you are coping on 50mcg alone.Maybe talk to your GP due to your gene defect and ask for T3 to be added to your T4 and give him a copy of the following.

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

Clutter profile image
Clutter

Jadzhia,

Your GP is wrong not to increase dose as TSH 2.99 is too high. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Still, there is the danger of high FT4 converting to rT3 instead of T3 so you might be better off adding T3 to your current Levothyroxine dose. I would start with a quarter tablet 6.25mcg which is equivalent to 18.75mcg Levothyroxine to start with. If you tolerate T3 well then you might want to increase to a second dose of 6.25mcg taken at bedtime.

I don't think you need to wait until ferritin is higher before adding T3 unless the T3 makes you feel over medicated.

To send Jadzhia a private message: support.healthunlocked.com/...

Please complete the NHS England Survey re deprescribing Liothyronine. engage.england.nhs.uk/consu...

Please also sign the petition requesting better thyroid diagnosis, testing and treatment. change.org/p/itt-campaign-g...

ChrisH100 profile image
ChrisH100

Hello Jadzhia - can I ask how how you found out you have gene mutation....

Chris

in reply to ChrisH100

Sure, I got my DNA sequenced by 23andMe and then used Promethease to upload my raw genetic data to produce a report (takes about 10 mins and only cost me $5).

23andme.com/en-gb/

promethease.com/

There are other companies who sequence DNA such as ancestry.co.uk - they might be cheaper now than 23andMe, you should shop around. :)

ancestry.co.uk/

ChrisH100 profile image
ChrisH100 in reply to

Thank you Jadzhia....

Clutter profile image
Clutter in reply to ChrisH100

ChrisH100,

DIO2 testing is available via thyroiduk.org.uk/tuk/testin...

ChrisH100 profile image
ChrisH100 in reply to Clutter

Thank you Clutter....

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