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T3 - feeling very frightened!

Jefner profile image
56 Replies

healthunlocked.com/thyroidu...

I now have some t3, some Uni Pharma Liothyronine 25pg (many thanks !!!!!!!!!!)

My current symptoms are very severe depression/suicidal thoughts/anxiety/palps/panic attacks and my current weight which is 8st 11lbs (and still losing).

I take 75mg & 100mg Levo alternate days + I now have a small pericardial effusion of the heart according to my big MIBG nuclear medicine scan. Also take 20-25mg Seroxat, and pop Diazepam and beta blockers throughout the day to be able to get through it. Full blood results are on my original post.

I also have high rt3! What do i do about that?

Normally take my T4 in the mornings but had heard that taking it at night instead could be better which I have done for a couple of nights.

Looking for advice please from you lovely people as to how best to introduce the T3. I have a pill cutter so each quarter will equate to around 6.5 but I might shave a little more off to start at around 5.

Do I take it with my T4?...... separate from my T4?....... once a day to begin with????

My very high daytime cortisol levels have also to be considered before i take t3 as i could not bear any more symptoms on top if what i am dealing with. Post awakening (last test march) was 82.43 (7.45-32.56). Second test done at lunchtime 22.03 (2.76-11.31)

This is absolutely new territory to me and in my current mental state I need your very best advice plus any side effects to look out for.....pretty much anything and everything on introducing T3.

Update........now terrified of trying it cus of my high cortisol levels......please help me :( :(

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Jefner
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shaws profile image
shawsAdministrator

As you've not been well on levothyroxine I think I would try T3 only. Also what dose of T4 are you on at present and I do know your doses has been varying but what have you settled on now.

Jefner profile image
Jefner in reply toshaws

I had been ok on levo for 10yrs since diagnosis. Problems just started last sept when i went hyper cus of having hashis.

I have 75mcg and 100mcg alternate days as mentioned

shaws profile image
shawsAdministrator in reply toJefner

Sorry, I missed your dose of T4 above. I'd take your temp/pulse several times a day before you begin. This way you have a starting point. Actually on levo I had severe palps and in and out of A&E but T3 calmed everything down.

25mcg of T3 has the effect of between 75mcg and 100mcg of levo. So you could try this first. After a week or two you could add 1/4 at a time as I found it easier to drop back a small dose if I felt I was taking a little too much.

I shall give you a link and go to this dates December 24, 1997 and December 17, 1997

web.archive.org/web/2010103...

(I am not medically qualified just gone through the ropes and am well now).

NatChap profile image
NatChap

Cant advise but wishing you lots of luck..hope this works for you xx

Daffers123 profile image
Daffers123

just to add my comments - 2 weeks ago I started adding T3 (5mcg day) to my Levo (88/day) as, like you my T4 dose has become unstable (Hashi's) after 8 years.

I did not reduce my Levo to compensate for T3 and have got overmedicated the past 3 days and felt very unwell.

so as Shaws says, you could try T3 only (didn't work for me in past ) but you might consider reducing your T4 if you intend to take both hormones. I am dropping my T4 by 12.5 tomorrow so I can continue with 5mcg T3.

so scary!

Jefner profile image
Jefner in reply toDaffers123

Do you take yours together or separate times of day. Plus i have high cortisol symptoms to deal with. I also have high rt3 and read on the net when adding t3, to just take that and leave off t4 for a while to get rt3 levels down

Jefner profile image
Jefner in reply toDaffers123

U found that such a small dose of t3 made that much of a difference to you as regards feeling bad? How are things working for you now?

Daffers123 profile image
Daffers123 in reply toJefner

Hi Jefner

Hope things are settling a little for you. I read your profile and it couldve been me writing it. exactly same thing happened, steady hypo for years then all went haywire and I suffered anxiety etc. as you did, eventually Hashis diagnosed.

I stopped Levo altogether and went on to T3 only but (probably due to my unbalanced cortisol which was v high at night and first thing in am) was unable to tolerate T3 . My endo in Harley St was in no doubt that it was making the anxiety, panic etc. much worse (yeah, beta blockers, Diazepam etc. et. Propranolol, PS, Holy Basil) and said must get my adrenalin under control. In my case, it was worse at night which is when my cortisol was highest.

Two things I believe helped me - I returned to T4 only and stabilised my dose, and and I took Mirtazapine for 3 months. I very quickly felt better although a little hypo, but the anxiety and panic and palps etc. all calmed down. It was a vicious circle, the anxiety made me feel worse, creating the high cortisol/adrenalin which then fed the anxiety.

I have found I am extremely sensitive to all chemicals now, and can notice a dose change of T4 within a few hours of taking it.

I am again trying to add some T3 in, but am on a small amount (2.5mcg) and taking it really slowly.

I am also trying LDN for the Hashis.

Did you start the T3 ?

sulamaye profile image
sulamaye

Personally I would take 75mcg t4 and 6.5 of t3. If you're taking t4 in evening then take t3 on waking, if t4 in morning take it all together. Dont be scared of it. Before I got ill I was on 175 of t4 and 20 of t3 for thirteen years and I never noticed any side effects when started.

Taking pulse, temp and BP can in theory help you keep an eye on any over medicating. As shaws said best to take these for a few days to get a baseline.

I would see how I feel, look for racing heart and raised pulse, temp BP etc. If still needed after a week I would increase by 6.5.

I would do this before going t3 only just to rule it out.

I am now t3 only because of high rt3 but it's slightly tricky to begin so you need to check that just adding some wouldn't work better. But if you are still overmedicated I would consider dropping my t4 further with the t3.

Jefner profile image
Jefner in reply tosulamaye

I do have a high rt3. I will have to buy a blood pressure gadget then cus I dont have one. How will I know i am overmedicating because i get palps all day anyway? What happens with body temp and blood pressure?

sulamaye profile image
sulamaye in reply toJefner

Well t3 only is one approach for clearing rt3, but if you were to do that I would advise buying Paul Robinsons book, or googling his work, on recovering with t3. It is too complex to be able to guide you, there are lots of things to take into consideration and it's a tough transition to start with as you the t4 clears.

Jefner profile image
Jefner in reply tosulamaye

It worries me taking t3 in morning because of my through the roof high cortisol levels, my symptoms are debilitating enough and i worry even a small dose would make them worse

sulamaye profile image
sulamaye in reply toJefner

adding t3 to t4 with high RT3 you are in danger of creating more RT3, as more of the T4 will be turned into RT3 as the body senses a rise in t3. What are you doing to lower your cortisol? All you can do is suck it and see and jiggle things around to find the optimum time for dosing, but not past 5pm I would hazard a guess.

Jefner profile image
Jefner in reply tosulamaye

What if i left off my t4 for a few days or reduce my t4? Have been taking holy basil. My post awakening result is 82.43 (7.45-32.56)

sulamaye profile image
sulamaye in reply toJefner

It takes about 8 weeks to clear T4 out of the body so stopping it for a few days wont make a huge difference, it has a long storage life compared to t3 which clears in a matter of days not weeks. I don't know what the answer is, as I've said it is complex. There is no reason that I can think of that T3 should cause you anymore problems re: cortisol that T4, after all it in theory ends up as T4, at least in part. If you want to clear RT3 you need to go T3 only, but the RT3 may be being produced for a reason, precisely beacuse of your high cortisol. This is why at the end of the day it comes down to trial and error or if u go T3 only there is Paul's book and his facebook page, but that is strictly for T3 only, not combo.

faith63 profile image
faith63 in reply tosulamaye

what good is clearing the rt3..with high cortisol and many other things, it will happen every time t4 is reintroduced. You would need to know why and fix that.

sulamaye profile image
sulamaye in reply tofaith63

Well that is one point of view, but if someone is chronically ill like I am I find being on t3 only I am functioning better and that supports my recovery. The body has to heal itself ultimately and for me, taking t3 is giving it a better chance of sorting itself out, just like taking HC is a temporary fix. But if you live life in a glass cage even improving how you feel by 10% makes life far more bearable. It's all individual after all.

Jefner profile image
Jefner in reply tosulamaye

Well said xx

faith63 profile image
faith63 in reply tosulamaye

i would do t3 only and work on the cortisol issue. It is individual..t3 only did not work for me or any thyroid meds. My body has continued to shut down.

faith63 profile image
faith63 in reply tofaith63

I have low cortisol and pituitary damage..whatever is causing the high rt3, is why i am still ill. i believe it is the low cortisol and hashimoto's. For some, the reason is high cortisol or sex hormones, blood sugar or just having hashimotos etc.. Which, by the way, is totally reversible. My stomach has stopped digesting food now and i am too weak to look for help. Endo number 5 will do me no good. Many of us are at the end of our rope, here, on this forum.

Jefner profile image
Jefner in reply tofaith63

So am i, have hardly eaten today cus the anxiety and depression so bad. I have no fight in me left, i just wanna go now

faith63 profile image
faith63 in reply toJefner

my stomach just has stopped digesting food. I want to live and enjoy life. i am afraid it wont happen though. i have tried so hard.

If i can still be here, than so can you..another day to try and there is an answer. Imagine how beautiful the world will look when we don't feel like this!!

You have to try..and keep trying.

Jefner profile image
Jefner in reply tofaith63

Oh i am very trying. Do u have low stomach acid cus apple cider vinegar helps with digestion and comes highly recommended for digestion issues. Kefir is also good

faith63 profile image
faith63 in reply toJefner

it is like i fill up on a few bites of food..feels like its swollen. It is gastritis and slow digestion. I have horrible reflux and a hiatal hernia, leaky gut too. I don't know if my acid is low or not. I did a nasty stool test with a functional medicine doctor. I was given probiotics and digestive enzymes ans l glutamine, which do nothing for me. How do i use the ACV? Thank you.

Did you do a stool test for your gut?

Jefner profile image
Jefner in reply tofaith63

Just add a teaspoon to glass if water and drink just before you eat. Especially good if u have raw greens like salads. Google apple cider vinegar reviews esp on amazon. Best in to get has "mother" in it although i am not sure what that us lol.

Yes i did a stool test

faith63 profile image
faith63 in reply toJefner

Thank you, i will try it..it can't hurt.

I never want to do a stool tests again. I felt like i might faint, when i did it. I was sweating and i had a surgeon's mask on! LOL!!..i guess that must have looked pretty funny.

I see, by your profile, that you have felt bad for quite a long time. I'm so sorry.

Jefner profile image
Jefner in reply tofaith63

Yes 7 months now which is why i am suicidal :(

ACV helps with acid reflux and aids digestion. Also acts kills some gut bacteria. U need to get the organic one with mother in

faith63 profile image
faith63 in reply toJefner

I thought you felt bad for 10 years, being hypo and hashi's. Something recently has made you worse then?

yes..this is what i used to get, but did not use it in water for digestion, because i am so acidic.. I don't think the stool tests show about acid, do they usually?

Jefner profile image
Jefner in reply tofaith63

Diagnosed 10yrs ago, everything seemed ok until 7 months ago when i went hyper with severe anxiety and panic. Not sure whether menopause set it off or just stress from last yr, but the nast symptoms have stayed with me ever since and has now had a knock on effect with severe depression and suicide thoughts

Nordidordi profile image
Nordidordi in reply toJefner

This is exactly what I'm

Going through, everyone is suggesting getting iron and adrenals right

Jefner profile image
Jefner in reply toNordidordi

How are you coping? Do you have high or low cortisol levels?

Nordidordi profile image
Nordidordi in reply toJefner

Hi I'm not doing very well I just want to feel better but with all these different ideas I have to start to follow a plan to feel better but don't know which one to start o have high cortisol

faith63 profile image
faith63 in reply toJefner

i have had the hyper symptoms, with weight loss, diarrhea and anxiety, last 8 or 9 months and stop..i think it is a hashimotos flare up. I get this when on ndt, the whole time, so i won't use it again. Otherwise, it all flares up, yearly..in the Spring or Summer. ..odd, or with stress. It has been a very bad 2 years of that. I really cannot handle life very well at all.

I think when you have autoimmune disease, it has flares and it is t be expected. This is why i am on the 30 day autoimmune paleo reset diet..except i had an egg and coffee, because i am starving and getting caffeine withdrawal. This last episode of whatever it is, again in the Spring has been one of the worst..but, i think i say that every time. This is the worst that my stomach has been, with not being able to eat. Maybe you should try the diet?.. since you have done everything else, which is where i am at.

faith63 profile image
faith63 in reply toJefner

with high rt3, this is telling you that you do not convert, thus your only hope, with your cortisol, is t3 only.

puncturedbicycle profile image
puncturedbicycle

Can I just contribute my own experience with reducing levo re the possibility of taking t3 alone (which you may or may not be considering)? On more than one occasion I had the world's worst anxiety when I was reducing levo in preparing to try t3 only (which I was never able to get on with). I resorted to quartering one of my mum's anti-anxiety tablets and taking a quarter when it all got too much.

I'm not a doctor and it's possible it was a coincidence, but I suspect that at least in my own case there is a relationship between anxiety and falling t4 levels.

If you're just reducing a little bit to make room for your new t3 dose, that's different. I just wanted to point up that if you're already feeling fragile and you want to eliminate levo, you may want to be alert to any emotional changes during the process to avoid getting to a point when you feel overwhelmed.

Jefner profile image
Jefner in reply topuncturedbicycle

Hadnt considered stopping my levo, just dropping it slightly? Maybe just 75 and not alternate between that and 100?

puncturedbicycle profile image
puncturedbicycle in reply toJefner

Thanks for clarifying. I should have said was referring to the suggestions that you should or might try t3 only.

It is usually suggested you reduce levo by 50mcg for every 10 of t3 being added but use your judgement based on what you know about your bloods. If you plan to try 5 at first (I did that just to reassure myself, but you may not feel any different until you go up to 10), I wouldn't bother reducing levo first unless your current blood results are very close to the top of the range.

I did go a bit over range eventually after starting t3, but as I was feeling well my doctor recommended I reduce levo very slowly. If you're already dealing with emotional issues you may want to do the same (your idea of taking 75 levo every day sounds like a good way to start). As far as I'm aware the equation of 10 t3 = 50 levo is not written in stone (I've read it could range from 1:3 to 1:5).

The difference between 5 and 6.5 shouldn't be worth worrying about so if you want to start by quartering the pills give that a go.

Re palps, I used to have them when undermedicated. It's one of those symptoms that can be confusing.

Good luck! Adding some t3 to my levo helped me a lot.

Jefner profile image
Jefner in reply topuncturedbicycle

I am already too poorly to take any chances. My anxiety is debilitating all thru the day but does ease off in the evenings because of my high cortisol levels. I was thinking of just sticking to 75mcg and about 6.5mcg t3.

How did you start taking yours? Separately? Together? How did you level things off for yourself?

puncturedbicycle profile image
puncturedbicycle in reply toJefner

It's one of those things that is very personal and a bit unpredictable - everyone is different - but this is what I did to start. Every morning around 7:30 I took my usual levo (I can't remember what the dose was at the time) and 5 t3 (a quarter of my 20mcg tablet) with water and went back to sleep. After a few days to a week (not sure of the time frame) when I didn't have any ill effects (no palps or anxiety) I increased the dose to 10. Within a day or two (almost immediately) the constipation and bloating I'd had while on levo resolved. I can't remember feeling any further changes immediately. Down the road I began to gain energy (surely some of that was due to losing a lot of the water weight which was so tiring to carry) and strength. I felt really well for about six months.

During that time I did show a slightly high t3 blood result and was asked to very slowly reduce my levo. Around that time I also crashed a bit energy-wise (maybe being a bit overmedicated, maybe because I injured my knee, or any one of a dozen other things that were going on at the time) but it wasn't because I reduced my levo.

Even when slightly overmedicated my anxiety was never worse than when I was on no meds or on levo only. (When on levo all my blood tests looked good, incl my t3, so I know I wasn't undermedicated.) If anything I felt more tense than anxious when overmedicated. The trembling, cowering anxiety I felt before was relieved rather than exacerbated by t3.

I hope that helps. Let me know if there's anything else you'd like to know.

Good luck with your new meds.

Jefner profile image
Jefner in reply topuncturedbicycle

Thank u hun. When your bloods showed a higher t3 u said you were told to reduce your levo! Why not the t3?

puncturedbicycle profile image
puncturedbicycle in reply toJefner

I think my doctor was trying to allow me some time on the t3 to feel well and didn't want to mess with it. I was only on 10mcg at the time, so there wasn't much wiggle room for reducing, and I had only begun to feel well when I went up to 10 (5 had made no change at all). I hadn't felt especially well on levo so I guess reducing it seemed less of a gamble.

But I realise now that this is the eternal question when you're on both t3 and t4. I'm never sure which to reduce or raise when a change is required.

EMargaret profile image
EMargaret

I was on 150 mcg of t4 and when I started on t3 I went to 100mcg of t 4 and 50t3 for 3 days in the morning the added another .t3 at 2 pm I feel fine , too much t3 would give you palipations etc within 2 days because it has a short life in the body so if you feel the effects just miss out you next dose, but not happened to me yet but happened regularly on t4

Lalacat profile image
Lalacat

Wishing you well, I am so happy for you Jefner! 😆 Good luck! XXX

humanbean profile image
humanbean

Trying to shave a little bit of a 6.5mcg piece of T3 is rather a waste of time. T3 doesn't make people explode or drop dead, no matter what the medical profession has to say about it.

Jefner profile image
Jefner in reply tohumanbean

I am petrified of trying now human cus of stuff i have been reading ie. My high rt3 levels and how t3 can make my high cortisol symptoms much worse. I dont know what to do, feeling weak and desperate again :(

humanbean profile image
humanbean in reply toJefner

I had high rT3 and high cortisol when I began T3-only. It wasn't the nicest experience I've ever had, but I've no regrets about it. When I gave up on T3-only a few months later I felt better than I had in years.

I did find that I had to go up in dose much more quickly than recommended. I couldn't walk or talk or think very well on tiny doses of T3. But I have to admit that throwing caution to the winds like I did wasn't the most sensible thing I've ever done.

If you have stayed on levo then you shouldn't have a problem. I came off levo for a whole week before starting T3 only - not the cleverest thing I've ever done. I should have made the switch more slowly.

Jefner profile image
Jefner in reply tohumanbean

So u were in the same situation as me then, high cortisol and rt3! How did you treat your high cortisol? Why did you give up on t3 only when u said you felt better? What are you on now?

humanbean profile image
humanbean in reply toJefner

For my high cortisol I tried a supplement called Seriphos. Do a search on the forum for the word and you'll find quite a few comments on it, including some from me.

I've also found Rhodiola Rosea helpful.

For getting to sleep I've used melatonin (occasionally).

For depression I use 5-HTP which also helps with getting to sleep, but I think that increases cortisol. Despite that I've been using it for at least 5 years now and wouldn't give it up because I'm sure not sleeping well causes huge amounts of stress.

High dose vitamin C helps as does methylated B vitamins including methylfolate, methylcobalamin and adenosylcobalamin.

I found vitamin A helpful, specifically the retinol form, not the beta carotene form. Hypos can't absorb the beta-carotene form of vitamin A.

In general, any mineral or vitamin deficiency will stress your body, so to reduce the stress (and hopefully the cortisol) you have to fix as many deficiencies as you can.

I also gave up gluten, despite testing negative for coeliac disease. It improved my health a lot.

The reason I gave up T3 (temporarily), is that I had severe non-thyroidal illness for several years. I was never sure what part of my problems was thyroid-related and what was caused by other things, and I wanted to find out.

I stayed on high-dose T3 only for a couple of months, then went hyper and reduced dramatically, then took less and less until I stopped for several months and became quite hypo again. I tried NDT for quite a while after that, then tried T3 only again, and now take a combo of NDT and T3 in very small doses which is working okay for me at the moment.

Jefner profile image
Jefner in reply tohumanbean

I joined an adrenal grp on facebook which is an offshoot of the main STTM group. Lots help there and they put me onto holy basil which i took but had to stop last month before my big scans just in case they skewed my results according to my end (pfft). Only started back on it this week. Did actually look at getting some rhodiola as well but ended up with some PS which us like seriphos. Didnt opt for seriphos cus it not suiting some people and i will stay clear of anything that might make me feel worse, cuss i am a wuss. Not even sure the holy basil works for me anyway. Got myself up to3-4 at each peak. Bought some pukka holy basil which someone swore by but each tab is 32mg rather than mcg and havent taken in case too strong. Am just a wimp at taking stuff.

I do take a 500mg slow release vit c i bought in sainsburys and wondering whether i should take 2 a day cus you can go quite high on vitc. What do you think? Also take vitd, vitb complex, 1000mg fish oil with omega 3, 100mg magesium taurate, 10mg zinc, and couple times a week 1000 b12 methylcobalmin and the odd iron tab

VitA!! Not one i have taken. What are the benefits of that?

humanbean profile image
humanbean in reply toJefner

I've taken up to 3 - 4 g of vitamin C per day, and I've read of plenty of people who take more. The 500mg you take is a relatively small dose.

This link has a brief mention of vitamin A and what it helps with :

thyroiduk.org.uk/tuk/treatm...

More links on vitamin A :

onlineholistichealth.com/be...

ion.ac.uk/blog/anonymous/tu...

lpi.oregonstate.edu/mic/vit...

Jefner profile image
Jefner in reply tohumanbean

What dosage of vit a should i take?

humanbean profile image
humanbean in reply toJefner

I plan to take this one next (one a day) :

solgar.com/SolgarProducts/D...

Jefner profile image
Jefner in reply tohumanbean

Problem is with so many of these supps the all have that damn mag stearate in. I did find a uk site that is stearate free

faith63 profile image
faith63

Why do you think this high cortisol is normal and with a pituitary tumor too?!! I would be looking into WHY the cortisol is high, with another opinion on that. Thyroid meds don't work well with cortisol abnormalities. Mine is low ans i am unable to get help for it.

i would not do the levo any longer and only do the t3, like shaws said. I am sure your cortisol will not allow the thyroid meds to work well...especially the tt meds like levo. You don't convert it to the active form, t3, with cortisol issues. I think this is why i stay so ill.

Jefner profile image
Jefner in reply tofaith63

I dont have a put tumor

faith63 profile image
faith63 in reply toJefner

i thought you said you had a growth or abnormal mri of the pituitary? Sorry if i am mistaken on this.

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