Thyroxine/Warfarin interaction ... anyone know a specialist ?

[Banjogirl]

A friend of mine is having considerable trouble stabilising her thyroxine/Warfarin levels as they are well known to interact with each other. The main problem is really one of different hospital departments not communicating with one another and stabilising her doses accordingly. Tbh, they’re not really aware of the interaction of thyroxine/Warfarin on each other. Every time her levels are tested, they shuffle about with her dosages in an effort to keep her at optimum. But any increase/decrease of one affects the other and keeps being repeatedly changed 🤦‍♀️ My friend has a pacemaker fitted hence the Warfarin and no functioning thyroid gland

Does anyone know of a specialist in the UK who might be savvy enough to be able to join up the dots and think of the bigger picture in helping her to stabilise her levels of Warfarin/thyroxine ? Info links below ... Thanks

google.com/search?q=warfari...

[diogenes Remembering]

My wife who has been on T4 longterm, was prescribed warfarin to help with persistent AF (which since has stabilised). She could not control warfarin levels at all, which meant continual testing by doctors to try to find a stable dosage. In vain. She now takes atrixaban which is far more effective though a little more expensive.

[Jbold1 in reply to diogenes]

Do you mean "apixaban"? That's Eliquis. Lol, why can't people use the brand names? That'll help you avoid messing up the generic, which is typically more difficult to spell and pronounce. My dad is on Eliquis. I wish i was on that. I'm still on warfarin, and my INR is always low thx to my tapazole.

[Cariad123]

When l was on Warfarin even eating carefully my numbers were all over the place and kept seriously dipping leaving me very vunrable to clots again l was using Leverthyroxin then

Hospital changed me to Riveroxiban and seem to be okay also l use NDT now

[Jbold1 in reply to Cariad123]

Do you mean "rivaroxaban"? Again, why don't people just say the brand name? When you spell it wrong, it makes you sound like you don't know what you're taking. It's Xarelto. Also, it's "Levothyroxine", with an "e" or Synthroid. I didn't know that Synthroid could affect warfarin levels, but I know from experience that Tapazole certainly can.

[MaisieGray]

A friend of mine found she was so much better with regards to both issues, when she swapped to NDT from Levothyroxine. I share that only anecdotally, as it was something she herself drove in the hopes that the change would be beneficial, rather than at the suggestion of a savvy specialist. Her private Endo was receptive to her request and subsequently provided a detailed report to her NHS GP supporting the continued prescribing of the NDT on the NHS; however a mutual friend with "just" non-autoimmune hypthyroidism saw the same Endo on her recommendation, and had a poor experience of them. So it's the change to NDT that I wanted to throw into the ring, rather than a particular Endo.

[Banjogirl]

Thankyou. I have mentioned NDT to her before as a better thyroid hormone route. I will suggest she asks her Endo , as well as looking at an alternative to levo.

[greygoose]

She doesn't take them both at the same time, does she? Stupid question, maybe, but you never know.

I was on blood thinners for a while, without being on any thyroid hormone - not Warfarin, but can't remember the name - and even then they couldn't stabilise the dose! It was up and down all the time.

[Banjogirl]

Thanks Greygoose. I half expect she takes apart from levo as I’ve pointed out to take levo away from other meds in general. She’s stick thin, can’t put weight on tho tries, and Endo just increased her levo to 150mcgs pd. ! No doubt, the warfarin team will now reduce that dose when next tested. It’s like a see-saw. I’m wondering if she went onto NDT that the t3 component wouldn’t afffect warfarin levels. ? I’ll have to research that one. She needs alternative to warfarin for sure.

[silverfox7]

I had a PE many years ago now and rushed into hospital. To cut a long story short I was put on Warfarin and once stable I was fine. I took my Levo at around 6 am and Warfarin at 6 pm I was taken off it 3 months later after many many tests which meant the clot was from a hip replacement op. I don't have antibodies though so may be that made the difference. The Norovirus I caught whist in hospital wasn't helpful though!

[Banjogirl]

I hanks Silverfox. It’s getting her stable that is the problem. 2 yrs and still suffering.

[Jbold1]

Hi, there. She REALLY needs an endocrinologist AND a cardiologist, but the two should ALWAYS speak with each other. I'm from the states, and my doctors are all in the same network. They can all see all of my test results and meds and everything. They email each other all the time. It helps that they both are great communicators. Go figure that i find two men that are great communicators, and they're both married! Lol.

So, i have Grave's disease AND atrial fibrillation, which was brought on by the Grave's cuz i didn't know about it in time. It did a lot of damage to my body and mind. I still have a great deal of anxiety even though I'm on methimazole and antidepressants for depression and anxiety. I'm a recovering addict so i can't take anything that'll interfere with my sobriety. Plus, i don't what to.

I feel for your friend. Ik what it's like to keep getting your INR checked and having them tell you they need to increase your warfarin even though your nose and gums are constantly bleeding. I also have sleep apnea and use a cpap. So, i constantly wake up with a bloody nose and bloody mucus from the blood running into my throat. I can't help opening my mouth cuz i need to increase my pressure on my machine. That's another story, lol. Anyway, I'm supposed to be switching to another med soon, like Xarelto or Eliquis or Pradaxa. Your friend should also watch her vitamin K intake and not eat any leafy green veggies if she takes warfarin.

[Banjogirl in reply to Jbold1]

Thankyou Jbold1. I’m sorry you too are having complicated issues but so pleased to hear your specialists communicate !👍. Only wish my friend’s specialists did. She’s going to ask her cardiologist to change away from warfarin.

[Cariad123]

Thanks for the spelling lesson

No need to be so rude