Help to keep T3 at correct level

[Rita-D]

Hello,

I need some help please. I have recently had a couple of bouts of Atrial Fibrillation, May and July. My GP registrar wrote to the endocrinology team to ask for advise because my TSH was 0.02. The endo (who I have never met) has written back and said to halve my dose of T3 from 20mcg to 10mcg. I am furious that this endo who has never met me and doesn't know my medical history can just arbitrarily do this.

I have had a text from the pharmacist at my GP surgery asking me to make an appointment to discuss this with her. A pharmacist! I have dealt with this pharmacist before and I do not have confidence that she is able to titrate medications correctly. I saw her when I was having below 50 heart rate during the night and I thought it was related to the doubling of a betablocker that was increased following the Afib bout. She had no clue what it could be. After much discussion, she went to discuss with a GP who agreed that I should reduce the dose. Unsurprisingly, the low heart rate went back to normal.

My thyroid has been stable ever since I went onto T3 7 years ago, even through chemotherapy treatment for breast cancer and an incident of Posterior Reversible Encephalopathy Syndrome (caused by an extremely high blood pressure spike).

I was only prescribed T3 after much argument with various endocrinologists after I was able to show that I am heterozygous for DIO2 gene.

I have purchased T3 privately with an NHS private prescription for the past 7 years as I was concerned that the ICB might remove it. I have been relatively well, despite these 2 incidents and the thought of reducing T3 and again living a half life terrifies me after all that I have been through.

If it was excess T3 causing the Afib why has it only manifest itself after 6 and a half years.

It was my Apple watch that alerted me to the Afib and a visit to A&E confirmed that I was in Afib for several hours. I have had an echocardiogram and a 24 hour ECG, both of which were normal. I've been put on Apixaban which is an anticoagulant to prevent clots and I have been referred to a cardiologist but have not yet received an appointment.

I have been on hormone blockers (Aromatase Inhibitors - AIs) for the past 4 years - these block oestrogen and have a cumulative effect over the years, there is some retrospective evidence that these are implicated in Afib. Also there is some evidence that depleted oestrogen levels in post menopausal women are also indicated in Afib. I have to be on these hormone blockers for another 6 years. Given my age, 68 I firmly believe that the depleted oestrogen is implicated in my Afib diagnosis. Also both these instances occurred during an unexpected bout of hot weather.

I have done some research and I have discovered some retrospective results that show some correlation between AIs and Afib. I met with my oncologist to see if I could go on Tamoxifen (which has a different mechanism of blocking oestrogen) and I am now on that. Not had any episodes fur

My TSH has been low/suppressed, as expected, ever since I've been on T3. The endos and GPs don't understand that and get freaked out by it, despite the number of times i tell them that it's a pituitary hormone.

The endo is saying to halve it without having seen any of my latest results.

My latest results on 17/7 are:

TSH - 0.02 (0.34 - 5.44)

Free T4 - 13.9 (11.5 - 22.7)

Free T3 - 5.2 (3.5 - 6.5)

This is on 125mcg Levothyroxine and 20mcg Liothyronine

As you can see, I am far from over medicated, I could probably increase T3 a bit more although I'm very reluctant to do that as previously an endo said I could increase by 10mcg and I became really ill with oedema and hypo symptoms again (this was before I knew from this forum, that you need to titrate increases very slowly). It took me about 3 months to stabilise again and I have been wary of making changes ever since.

I have not yet made an appointment with the pharmacist, but I have made an appointment with a GP, but cant see him until 7th October. I have an endo appointment on 24/9 instigated by GP which I am thinking of cancelling.

I am really concerned and anxious that my T3 will be halved and that I will become really ill again, living a half life as I was before I was prescribed T3. After all I've been through, I am not prepared to do that again.

Any suggestions or help in tackling this would be really appreciated. It's causing me such a lot of anxiety.

Sorry for the long post. Thank you.

[SlowDragon Administrator]

was test done early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Assuming yes….Ft4 possibly on low side

Do you always get same brand levothyroxine and T3 at each prescription

Have you tested vitamin D, folate, b12 and ferritin levels too

You can refuse to reduce dose

But may have to then self source T3

T3 should only ever be reduced very SLOWLY and TSH unlikely to rise for many months…..if ever

[jimh111]

Afib can come on many years after having high thyroid hormone levels. I' m not saying this is happening in your case but just pointing out high hormone levels have a progressive effect on the heart.

[Jaydee1507 Administrator]

I have purchased T3 privately with an NHS private prescription for the past 7 years as I was concerned that the ICB might remove it.

Can you explain this please? The NHS doesnt usually write private presciptions.

If anything you could increase Levo slightly, FT4 is on the low side.

[Rita-D in reply to Jaydee1507]

I had an NHS prescription at the time that T3 was extortionate. I sourced a supplier in Germany and spoke to the GP to ask if I could have a private prescription because I was concerned that the CCG would remove it. He agreed and I have been purchasing privately ever since. Since Brexit, I have to purchase from London.

[Jaydee1507 Administrator in reply to Rita-D]

I see, quite an unusual scenario.

Pharmacists are now used quite often by NHS GP's, they are specially trained clinical pharmacists, not just a regular pharmacist.

england.nhs.uk/commissionin...

You could just skip the pre arranged appointments and head directly to a precribing pharmacy such as Roseway.

What supplements are you taking?

[Rita-D in reply to Jaydee1507]

I’m not taking any supplements as I’m on 3 thyroid meds, 3 heart meds, Tamoxifen, Apixaban and now Metformin as I’m now diabetic. I purchase my T3 from Roseway so I’ll go down that route if the GP tries to reduce my liothyronine. Prior to my husband’s passing and the Hashimoto’s I was only ever on HRT! I really want to reduce my medication but I don’t see thyroid pills as medication as they’re replacing my missing hormones.

[Jaydee1507 Administrator in reply to Rita-D]

Its a catch 22. Unless we have our vitamins at optimal levels then our thyroid hormone cannot work well. I'd recommend you get your levels tested and start a new post with the results for members suggestions.

[Rita-D in reply to Jaydee1507]

I am quite happy with where I am. I was just asking for help to eep my liothyronine at 20mcg when the endo has said to halve it.

[SlowDragon Administrator in reply to Rita-D]

You won’t know what your vitamin status is without testing

Test vitamin D, folate, B12 and ferritin at least annually

[Rita-D in reply to SlowDragon]

Thank you.

Ferritin - 99 (15-200)

Folate - 10.7 ( >5.4)

Vit D and B12 was not tested, I’ll do a private test.

[SlowDragon Administrator in reply to Rita-D]

Folate lowish is range is up to 20 or definitely low if range is up to 60

[Rita-D in reply to SlowDragon]

Range just said > 5.4.

[SlowDragon Administrator in reply to Rita-D]

Yes….often does…not helpful is it

[Rita-D in reply to SlowDragon]

Not helpful at all.

[Hylda2]

AF 100% of the time, Pacemaker and av node ablation. 100 of Leo plus 25 of Tiromel purchased quietly on my own.

All good! Will tell Drs as and when!