Good news potentially : Hi guys! I met a... - Thyroid UK

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Good news potentially

zebady profile image
33 Replies

Hi guys! I met a fantastic endo at princess royal university hospital and he perscribed me 60mcg liothyronine for treatment resistant depression and or thyroid brain fog and decreased my levothyroxine from 175 to 150! What a star! I have collected the around £3000's worth of meds in a small jar... lio at 9.50 a day for 20mcg times 120 days.... their attitude was you can't put a price on happiness.... and I've been dreading this appointment for 5 months.... what a lovely guy... just thought I'd share the good news and point out and give hope that there are great endos and hope out there! Keep on trying there is care about xxx (just such a shame the nhs is getting ripped of on prices... it's criminal we all know). But I've just got my fingers crossed this concoction works. YOU CAN'T PUT A PRICE ON HAPPINESS as they meant..... these medications are catalysts to a rewarding life potentially and factually. I'll keep you all posted.... thanks to the site facilitators again xxx.

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zebady
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33 Replies
shaws profile image
shawsAdministrator

You will be very relieved and best wishes for on your new treatment.

Clutter profile image
Clutter

Mikepassword,

Please don't take 60mcg T3 on top of 150mcg Levothyroxine. That is likely to make you very unwell. It is a massive dose increase equivalent to increasing by 180mcg Levothyroxine.

20mcg T3 is equivalent to 60mcg Levothyroxine so that's a big enough dose hike in one hit. Split the 20mcg tablet in half and take 10mcg with your Levothyroxine dose and the second 10mcg dose at bedtime. Ideally you will have a thyroid function test 6-8 weeks time to see that dose is adequate and that FT3 remains within range.

I hope it helps you. I found the addition of T3 very helpful in improving depression.

jimh111 profile image
jimh111 in reply toClutter

Clutter is giving excellent advice. Did you really mean to say 60 mcg liothyronine? I would skip your levothyroxine dose for two days before starting on 10 mcg liothyronine at breakfast and bedtime. This will allow for the different half-lives and smooth the change over. If it really is 60 mcg I'd increase by 5mcg every few weeks until you feel better or have got to 60. I've found it better to take the slightly larger dose at bedtime and it helps with deeper sleep and less brain fog, I assume the brain sorts out its memory banks during deep sleep. If you find you are getting insonmia or a fine hand tremor then you are on too much. In the longer term you might find you are better off on a much reduced dose of levothyroxine.

zebady profile image
zebady in reply toClutter

Ok thankyou... though I'm a bit lost now.... because a treatment for 'treatment resistant depression' is 60 mcg liothyronine in my eyes that should be added to a normal thyroid function situation witch is me at 175 to 150 mlg of levothyroxine! Witch is what's been perscribed... but I don't want to go thyroidtoxic do I?.... what to do?

zebady profile image
zebady in reply toClutter

I think the treatment for treatment resistant depression plan includes pushing up free t3 out of reference ranges.

Clutter profile image
Clutter in reply tozebady

Mikepassword,

Surely your psychiatrist should be treating you for treatment resistant depression, what would an endo know about it? I can't see how you won't go thyrotoxic if you add 60mcg T3 to 150mcg Levothyroxine unless you are desperately under medicated on 175mcg Levothyroxine.

zebady profile image
zebady in reply toClutter

This is tricky! My shrink sent a psychiatric nurse and letter with me to see the endo... stating that there is a treatment for thedepression and it is augmentation of an antidepressant with 60mcg liothyronine and he perscribed the liothyronine there and then.

Clutter profile image
Clutter in reply tozebady

Mikepassword,

I'm aware that psychiatrists have treated euthyroid patients with high doses of Liothyronine and Levothyroxine to treat drug resistant depression but it isn't approved by the Society of Endocrinologists.

I do think you may become thyrotoxic and would advise you titrate gradually to 60mcg T3 or as much as you can tolerate rather than take it all at once. If you do feel over medicated skip the next few doses and then reduce dose.

zebady profile image
zebady in reply toClutter

good advice... thankyou. I will do

Minigirl profile image
Minigirl in reply tozebady

Mikepassword

I`m watching `The Thyroid Secret` videos playing daily at 5.pm. 9 in all, 6 more to go.

thethyroidsecret.com/back-t...

info so far, take Armour, or Westhroid etc go on a Paleo diet, go gluten free, sugar free, dairy free, stop stress in your life.

Go to a `Functional Medicine Clinician` to manage the illness & to be prescribed `Low Dose Naltrexone` to balance your auto immune system. It`s like the immune police, if the immune is racing around your body attacking healthy tissue LDN stops it & balances it. Start off on a low dose 0.5 gradually increasing to 4.5 LDN protocol is on the Net. Take it at night, but if there are vivid dreams take in the morning.

Stem Cell treatment to help reverse the condition.

Hope you all get to watch the videos.

Minigirl

zebady profile image
zebady in reply toMinigirl

Thanks minigirl. Ìll have a look now xxx

jimh111 profile image
jimh111 in reply tozebady

Normally the 60 mcg liothyronine is given to people with healthy thyroids. The liothyronine suppresses their TSH and this tells the thyroid to stop making hormone. In your case you will be having the 60 mcg liothyronine plus the 150 mcg levothyroxine.

I would migrate across gradually. For each 10 mcg liothyroxine you add in reduce your levothyroxine by 25 mcg but skip all your levothyroxine for a couple of days before upping your liothyroxine by 10 mcg. This will keep your overall thyroid hormone fairly stable (it will increase a touch). Eventually if you need 60 mcg liothyroxine you should not be on any levothyroxine. You might find your depression resolves with less than 60 mcg liothyronine.

SeasideSusie profile image
SeasideSusieRemembering

Good news zebady , so pleased you had a good meeting and things are looking up.

Clutter has advised caution regarding the dose of T3, I am inclined to agree with her. Do please go slowly and let us know how you get on.

zebady profile image
zebady in reply toSeasideSusie

Ok will do. Thankyou. I need to think this all through... but I think it comes down to this .... treating ' treatment resistant depression ' adds 60 mcg of liothyronine to a normal thyroid function witch is me a 150 to 175 levothyroxine and is designed to push me out of normal reference ranges... but I don't want to go thyroidtoxic! What a quandary! I'm a bit lost.... I wonder how much thyroid meds I'd need b4 I'd go toxic?

puncturedbicycle profile image
puncturedbicycle in reply tozebady

Fascinating. I did wonder if this wasn't ignorance on your doc's part but actually a specialist treatment plan. We see so much ignorance it can be hard to trust that someone might actually know more than we do.

For me, it only takes a small amount of 'extra' t3 to go hyper because my t3 is near the top of the range. Maybe if you had some beta blockers you could keep handy - ? They can counteract t3 to an extent.

I suggest if you can maybe have a quick chat w the doc and tell him your concerns and see what he says.

I'm so interested in what happens here. I suffered w treatment-resistant depression for years and it is a real nightmare as you know.

zebady profile image
zebady in reply topuncturedbicycle

Interesting about what you say about beta blockers! I'm on them allready!

zebady profile image
zebady in reply tozebady

I have been diagnosed with schitzoaffective disorder witch is I'm between bipolar and sxhitzophrenia and it's treatment resistant and has a depressive side to it... I still wonder if I actually had thyroid psychosis instead! I haven't suffered psychosis for 5 years... since having my thyroid out! So would you say to feel an effect I need to stop propranolol, the beta blocker?

puncturedbicycle profile image
puncturedbicycle in reply tozebady

I think all these things need to be discussed w a specialist. It seems important given your experience to keep everything as steady as reasonably possible and not to put you on a roller coaster of different doses of different meds.

Do your tests show low t3? There is deffo interaction between t3 and BBs. But if you're on them for a reason you don't want to just stop taking them. High t3 has mood-affecting properties too and psychosis can be seen alongside both uat and oat so I'd like to see you really given good professional attention for this treatment.

Is there a way to have a sort of conference call (either via phone or email) w both the psychiatrist and the endo? You can make a list of questions and concerns and they can combine their superpowers to give you the best experience possible on this part of the journey.

zebady profile image
zebady in reply topuncturedbicycle

Thankyou.... I read up about beta blocker interactions and you are %100 right! I would love to get a shrink (a good one) and good endo in a room together! I've been told on this site that the person who brings it all together is psychneuroendocrinologist! And I can't find one though the term exists, mostly in academia though. I don't think I'd be able to get them to confrence call each other, the idea would be a fine thing! Thankyou for your contined support on this site and energies

puncturedbicycle profile image
puncturedbicycle

Hi Mike.

Congrats! It is so unusual to meet an endo who treats us with respect, I'm very pleased for you.

Just to clarify what others have said re dosing, here is a conversion chart I sometimes consult: centraldrugsrx.com/pdf/Thyr...

10mcg 3 is thought to be comparable to 30-50mcg levo and is more immediately accessible, so you can see how 60 t3 sounds like such an extreme addition when your levo has only been minimally reduced. So the t3 alone is equivalent to more than the levo you're taking; it is roughly like doubling or tripling your levo. I too would think it sensible to not hammer it all at once but gradually increase t3 in small increments to see how you go. You wouldn't want to go from one extreme to the other.

Good luck!

zebady profile image
zebady in reply topuncturedbicycle

Thankyou puncturedbicycle. 😊 I will do that.

zebady profile image
zebady in reply topuncturedbicycle

Thanks for the chart and one way of putting it is ill be on around 400 mLG of levothyroxine witch is what everyone on here is so worried about. I need to be cautious.

nightingale-56 profile image
nightingale-56

So pleased for you zebady and hope that is the answer to your problems. Good to know that there are still some good doctors at what was once Farnborough Hospital (my Mum worked there). Wish you well.

zebady profile image
zebady in reply tonightingale-56

My dad worked there too as an engineer! It's hard to believe that it's been there for 17 years now! There are some good good key people everywhere 😊

nightingale-56 profile image
nightingale-56 in reply tozebady

So good when we find them too.

zebady profile image
zebady in reply tonightingale-56

Bless them I say.

Hillwoman profile image
Hillwoman

It's really heartening to read of a consultation that goes so well.

I think it's worth pointing out, in response to the negative comments here about large doses of T3, that some people only do well on large amounts of replacement hormone. Peripheral resistance to thyroid hormone is an under-appreciated problem and a supra-physiological dose of T3 with the levo may be appropriate in your case. I can't tolerate levo at all, and at the moment I'm on 115 mcg of T3. My dose used to be much higher, but long term treatment for chronic viral infection seems to be clearing part of my problem with receptor block.

Edited to say that it's as well to be flexible about dosage and to keep your situation under review.

zebady profile image
zebady in reply toHillwoman

Thankyou SO much.... I think I'm in the same boat as you! But how can you be tested for it?

Hillwoman profile image
Hillwoman in reply tozebady

Well, the short answer is that you can't be tested for thyroid resistance in most circumstances. There has been research into the most devastating congenital forms of resistance, but the rest of us may be born with a milder form of it, like the late Dr John Lowe. 'Milder' in this case just means that it has a less obviously devastating presentation!

Nutritional deficiencies can lead to peripheral resistance, so can chronic infection, but in most cases the cause isn't known. It's a problem that gets very little attention.

zebady profile image
zebady in reply toHillwoman

Thankyou so much again for that. As well as thyroid cancer I havery ulcerative colitus an immune disease.... I did wonder how you ever got the backing to get so much t3 perscribed! Thank God you did! Was it a privete endocrinologist? I may need their number!

Hillwoman profile image
Hillwoman in reply tozebady

Nowadays I have to self-treat and pay for it all myself. I do have occasional consultations with Dr Barry Peatfield, in the private sector. He got me off levo after 20 years of disastrous treatment, and he gave me the knowledge and confidence to take a different approach to my thyroid and adrenal problems. I also consult Dr Sarah Myhill, who is treating the chronic infection, among other things.

zebady profile image
zebady in reply toHillwoman

Thankyou I shall hold that close... I had a lot of reverse t3 going on at 175 levothyroxine so think a diet of just high levels t3 is probably what is needed. Xxx

In the lead-up to my RAI treatment I was given 60mcg of liothyronine per day for that month or so.

BUT THAT WAS INSTEAD OF THE 150mcg LEVOTHYROXINE I WAS THEN TAKING, NOT ADDITIONAL TO IT!!!!!

Do as the others are telling you, you will become very ill if you take both.

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