Finally T3 has arrived!

[CaroleM-A]

After taking T3/T4 combined therapy for five years my prescription for T3 was taken away by the CCG in 2019, which I am fighting still. I was getting it from Turkey but the source dried up and I haven’t taken any since September 2020. Symptoms are now really bad, as I told them they would be, and I’ve a major complaint going at the hospital about my treatment... still! My appeal is with the CCG

In the meantime...

I have just received a delivery of T3 YIPPEE!

Can anyone advise me please? Do I start slow and gradually increase to my previous dose or just start again from where I was?

I have had the gene test DI02 and have homozygous variant genotype AA.

My most recent blood results that I can find are

August 2020

TSH 0.02. (0.27-4.20)

Free T4 10.5. ((12-22)

Free T3 4.2. ((3.10-6.80)

January 2020

TSH 0.02 ((0.27-4.20)

Free T4 6 (12-22)

Free T3 5.1 (3.10-6.80)

January 2019

TSH 0.03

Free T4 8.5

Free T3 3.6

Antibodies were checked ages ago and were negative

I’m supplementing vit D, last checked December 2017 it was 75

Also B vitamins B12 was 640.4 (180-900)

Folate 14.87 (2.5-19.5)

Ferritin 180 (33-400)

My T3/T4 levels have always been below range but I did feel better when I was in charge of my own dosage of T3 when I had to start buying it myself I put it up a bit to 50 mcgm from 40. Levo has been on 100 mcgm a day u TIL recently increased to 125

I’d be grateful if any help please

[SeasideSusie Remembering]

CaroleM-A

I don't think you can go by such old results. I'd resist adding T3 at the moment, get yourself a new test for at least TSH, FT4 and FT3, preferably include vitamins so that we can see if any of them need improving. Post results, with reference ranges, on the forum and members will make suggestions as to whether you need to reduce Levo or can just start adding T3.

Considering it's almost a year since you last took T3 I'd advise caution and start low, gradually building up the dose.

[CaroleM-A in reply to SeasideSusie]

Thank you SeasideSusie

Will see what I can arrange

I have had bloods taken since then but don’t have the results. I have asked for them so will post once I get them

[SeasideSusie Remembering in reply to CaroleM-A]

You can always do a private test with one of our recommended labs.Cheapest is MonitorMyHealth for TSH, FT4 and FT3 or full. Thyroid plus vitamin panel look at Medichecks and Blue Horizon

thyroiduk.org/help-and-supp...

[SlowDragon Administrator]

How long since dose levothyroxine was increased to 125mcg

Do you always get same brand levothyroxine at each prescription

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

Essential to regularly retest vitamin D, folate, ferritin and B12 at least annually

What vitamin supplements are you currently taking

Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS

On just levothyroxine, looking for Ft4 at least 60-70% through range

[CaroleM-A]

Levo increased to 125 19/02/2021

100 mcg are accord (North Star)

25 mcg are Teva

I think they are the same each time I get them

I take vit D, B complex, magnesium daily and have been for ages

My T4 has always been below range

[TaraJR]

Which CCG are you under? They should be following national guidance that says if you need T3 you should have it

[CaroleM-A in reply to TaraJR]

Bristol, North Somerset and South Gloucestershire

I am still fighting it. I have another appeal with the CCG now with a strong letter and DI02 evidence gone with it. Not holding my breath though

[TaraJR]

CaroleM-A if you're quick, there's an offer today on Medichecks, but it may run out at midnight!

Your CCG seems to be following national guidance on T3, so why are you having a problem?

If you're on Facebook, join ITT Improve Thyroid Treatment, where we have template letters you can use.