So like many of us my gP says my bloods are "fine" but I still have so many hypo symptoms. I've bought T3 off the web and they arrived yday. I was on 100mc levothyroxine so yday I cut down to about 50mc (have to break up pills as gp won't prescribe 50mc or 25mc pills) and have added 12 mc of T3. Yday and today I've been getting panic/anxiety attacks or something very scarie. Taking the T3 in tiny wee bits through our the day. I thought this was going to be a doddle but now I'm worried I screw my body up or have a heart attack!
Bought T3 off Internet: So like many of us my gP... - Thyroid UK
Bought T3 off Internet
Written by
Cree
To view profiles and participate in discussions please or .
Read more about...
68 Replies
•
Cree,
If you could post your thyroid results we could see whether you need to reduce T4 when adding T3.
I suggest you resume 100mcg and skip T3 until you feel normal again. Then you can add 6.25mcg for a week or two to see how you tolerate it before increasing dose.
I don't have blood results in affraid but planning to get tests done and ask for a print out. I assumed from things I read that I had to cut down T4 if Taking T3. I'd much rather have supervision while doing this but I know the gp will just blah blah blah about me going against their decision. If I go back to my usual 100mc levo and cut out T3 again, how long should I wAit to go for bloods to get accurate reading?
What if I keep at my 100mc levo and add 6.25 T3 and go by how I feel rather that blood tests?
Cree,
I would say you need thyroid hormone blood tests.
Medicating too much T3 can be dangerous and without knowing your levels, if is difficult to know how much to medicate, although some experienced members just go by pulse rate and temperature.
When members have been unwell on Levothyroxine for many years, the introduction of T3 may be felt a little more intensely as the body is crying out for it. Therefore, it is important to monitor how things are going but if you don't wish to conduct two tests, you could introduce T3 low & slow and test six weeks after starting.
If this were me I would reduce T4 to 75mcg and introduce T3 6.5 mcg daily. This is usually taken in one dose but as you appear to be so sensitive, you could crumble into even smaller pieces and take throughout the day as you appear to be doing so.
If all appears well after one week you could introduce another 6.25mcg taken in the pm. Take with a glass of water away from food and supplements (the same as Levo).
Have you had iron//nutrients tested lately ? Good thyroid hormone synthesis depends on optimal levels of Vit B12, Vit D, ferritin and folate. Your GP should test these but thyroid hormone testing will probably require private labs as GP's rarely test T3 which is the all important figure.
Post results complete with ranges (numbers in brackets) for members to comment.
.
Private labs testing
thyroiduk.org.uk/tuk/testin...
.
This following link explains the importance of vitamins and where they may be obtained
If you still feel Hypo on 100mcg Levo, but 12mcg T3 sent you into anxiety/panic, that tells me your Levo isn't working!
You're not converting it!
The sensible thing to do is stay on 100mcg & do the Blue Horizons Thyroid PLUS TWELVE. This will give you valuable information & test for Reverse T3, which the NHS don't test for.
That would give you evidence which could really help you get T3 from your GP!!!
If £139 is a real squeeze, then you could.
Request all your blood results from your GP. Hopefully (but not guaranteed) you will have your T3 levels recorded. Hopefully you can see what your T3 level was before Levo, at 50mcg, 100mcg etc..
So you can see how Levo impacted your T3 level.
You may find your T4 was going up, but not T3 (hence the Hypo symptoms).
If you can see clearly see that Levo does not increase your serum T3, then there's no point taking it & you could consider moving forward on T3 only. Start low, titrate up etc...
***The sensible advice is don't cut corners. Do it properly.
For £139 it could save you years of taking Levo, which might be doing nothing & it might get you T3 prescribed, which would quickly recoup your £139.
Oh & get you to optimal health...
I've made an appointment with my gp but I'll look into that Blue Horizon test tonight. Thanks 
Sorry to butt in but do you need to stop the levothyroxin before the blood tests. Tia
No, because Cree needs to see what his/her blood levels are at on the current prescribed dose.
Hopefully there is already a record of results pre treatment, so comparisons can be made.
The T3 must be stopped, because that will skew the result. The short half life of T3 suggests it will be out of the system in days, but TSH could be suppressed for longer.
Damn I've got the test through the post this morning and it's the PLUS ELEVEN!! Is that very wrong or will I get enough results from it??
Call them & they'll send the +12
You're trying to see why the Levo isn't making you feel better.
fT3 level is very useful of course, but high Reverse T3 will nail it.
I take it you've stopped taking the T3 now? Just back on the 100mcg Levo?
Better to give yourself a week or so for the effect of that T3 to settle. Did you just take the T3 for one day?
Thanks for replying I stopped the T3 and continued with my 100 levo the day I spoke to you guys. I took the T3 for 2 days. I'll give the company a phone on Monday and get the +12 and wait until the end of the week before I get the rest done
Good. You won't regret doing it properly!
If the figures show you're not converting Levo, then you can save yourself years of suffering & hopefully get prescribed T3, so you'll be legitimate & save money. Information is power.
BTW, +12 is Blood sample. I always use my local NHS blood clinic. They're more than happy to do it. I take a box of chocolates to say thanks.
I've paid to go to my local BMI(?) hospital, then gp can't say anything is dodgy
Perfect!
Sorted, they're exchanging my order x
I slowly increased, monitoring pluse, temps etc. am on 100mcg levo and 25mcg of T3 now,in split doses, with supplements of zinc, magnesium, selenium, vitc, methylcobalamin, folate etc. the first thing I noticed when taking even a low dose of T3 was that it seemed to have a calming effect. I still have some hypo symptoms, but I have lost weight, my eyebtows have grown back. I have to pluck them now. My fluid retention has imptoved, I am more mentally with it, more energy, more alert. My endo panicked because my TSH was below 1 and wanted me to lower my levo dose. I tried cutting it by 25mcg, but I became ill. So it seems I need both levo and T3
TSH below 1 is optimal. You are right where you should be unless your free t3 is low also. See
stopthethyroidmadness.com/l...
You try telling an ignorant endo that. My GP was having kittens because the endo wasnt happy. I feel so much better,though not completely well, that i am not prepared to play games with my dosage again. Shes convinced If I dont die of heart failure first I'll get osteoporosis.
Yep, that's the party line! I have the identical problem, low TSH so endo wants to reduce my dose. I just keep saying, "Nope, I will be ill, I know that because we have played that game twice before and there is no reason to expect a different result."
Another way of looking at this is, even if the heart thing is true (and I don't believe that). Who wants to spend the rest of your life seriously hypo when you can have a slightly shortened life and die of a heart attack. Sorry, a bit of a grizzly thought - but I remember my 2 years of being seriously hypo and I am not going back there, that was like being dead anyway.
Hi Cree, have you never seen any of your test results? Could you call and ask for the latest ones?
I think you almost stayed with your current dose of 100 levo when you took 50 plus 12 mcgs of T3 or close to the equivalent. I assume you cut the pill in half. But you may not be used to almost half your dose being T3 which may take some getting used to.
I don't think you need to worry about a heart attack but you might consider either doing what Clutter suggests or reduce the T3 by another half right now. Cut the pill into 4 parts instead of 2. I say that in case your T4 isn't working for you and in that case to continue the extra 50 mcgs. of T4 may not be helpful. But it would be good to know if the T4 was converting and how well it was converting and that would take a free T3 test.
I'm sorry to be so blunt - but why would you add T3 into your daily mix if you do not know your results ? Where did you read about adding T3 here on this forum ? Whatever I have read here - always advising caution to start low and slow and with the knowledge of where you are with your thyroid levels. T3 is very potent as you now know.
T3 is NOT a quick fix and I am wondering what are the symptoms you are hoping to alleviate. Did you ask advice here on the forum before starting ?
Are your levels of Ferritin - B12 - Folate - VitD - all OPTIMAL - otherwise nothing will work. So please ensure you know the FT4 and FT3 results with ranges .....
i am not anti- T3 - I use it myself - but like you I have been on this forum for a few years and have learned so much from others. Success is in the preparation
Very, very good advice Marz, as usual. But do try to put yourself in Cree's shoes, she is new to all this and I remember the terror I felt when I realized that I was not getting good advice (nor even logical advice) from my Endo. It took a very long and scary learning curve before I got enough knowledge to function properly, not just stay alive.
But yes, to Cree, copy out Marz's advice, stick it on your refrigerator, and DO IT.
Where were you able to purchase the meds from ?
I PM'd you.
I tried to get T 3 from a recommended source in Greece but my husband decided not to purchase as the money was to be sent to a private account in Montenegro which he felt was a bit weird. Do you know if that is the norm for payment or any other source. Thanks, Roni.
Good question, I ran into the same thing. For me it was that the money had to be sent to Larnaca in Cypress. I took this to mean that they were on some sort of tax dodge, they explained it as something to do with the Greek financial meltdown, maybe they do not want to put money into a Greek bank. Since it was such a small amount of money (~$25) and I had travelled 10 miles into town to send it off, I thought I would "just do it". If it came through, that was great, if it was all a sham, then I just wouldn't do that again. It came through! There is nothing wrong with their T3 and it works. I cannot tell you why the money route is so circuitous, if anyone else out there know, please tell.
Sounds similar to my experience.
I was on 100mcg Levo from GP. I didn't feel any different.
I did a private test with Blue Horizons, which showed my fT3 hadn't increased at all, but I had Reverse T3.
I wasn't converting the Levo!
I stopped Levo & started taking 25mcg T3. On day 2-3 I felt on edge.
I cut down to 12.5 & still felt on edge......
So basically, if you're not converting the T4, then the equivalent dose of T3 might be too much for you. Maybe way too much!
I'm not suggesting that's the case, you need to run the test, incl rT3....
PS, you should stop the T3 immediately & continue on your 100mcg Levo for a few weeks before you test, otherwise your results are scewed.
It's not similar to your experience as you did blood tests first to calculate what dose of T3 to add.
It's similar in that the equivalent dose of T3 was way too much.
So quite possible that OP has the same underlying issue, hence I brought it up & suggested they run the tests.
I would suggest that you reduced your T4 by too much if you went down to 50 mcgs and added in 6.25mcg T3 but can only speak from my personal experience. When I was taking 100 mcgs Levo T4 and my Endo recommended trying some T3 he reduced my Levo T4 to 75mcgs and added in 10 mcgs T3 ( this being 1/2 a tablet of the 20 mcgs Mercury Pharma T3 ) the only one available on prescription in UK. When we buy in from abroad as a lot of people have to do now,the tablets are a different strength. However,as already said,a print out of your current blood test results would be helpful in order for someone to help you.
When I was first put on T3 (private doctor) he made me stop levothyroxine for a month first. He then started me off with 5mcg T3 in the morning for 3 days, if I was OK I was to take another 5mcg lunch time again for 3 days, then if OK 5mcg in evening as well. Then an increase to 10mcg in morning, 5 and 5, then after 3 days of being OK on that increase to 10, 10 and 5 until eventually I levelled out and felt best on 20am and 20 lunch time. I could not take an evening one. Then he introduced the T4 but something like 50mcg for 6 weeks, if OK increased that to 75 for 6 weeks etc. I was finally OK on 100mcg levothyroxine and 40mcg T3. This does not mean I felt well yet, only that I could tolerate that amount without going hyper. I did gradually improve, finding first a day during a week where I felt quite normal again, then it went to two days in the week and I could then see a light at the end of the tunnel. One day about a year after, I remember waking up and realising I had gone a whole week feeling normal. That was about 15 years ago. Two years after (still well) I transferred to NDT but not because I wasn't feeling well on T4/T3.
Go by your symptoms not blood tests they are false readings. You find your own levels by looking at clinical symptoms.
Why are blood tests false readings?
The trouble with blood tests is that they give you the levels in your blood at the time of the test. What they don't do, is tell you whether that level is the right/best level for you.
The reference range is made up of supposedly healthy people, and the right levels for those people can be anywhere from the top to the bottom, plus another 2.5% either side of the range - they just knock those off for statistical reasons!!!!! So you may even need a little above or below the reference range to be healthy.
So, between you and your doctor, you ideally have to adjust dosages until you find the levels that are just right for you. This can only be done using symptoms. It can't be done using blood tests alone - they can only give you an idea of which way to go next, but only when used along with how you feel.
I'm afraid to say that the medical profession is trying to make a complex job into a very simple one, because this suits them best. They don't usually seem to worry about what's best for the patient. To make matters worse, this is what they are trained to do, and they don't usually know that they are doing a bad job for many of us.
For our own sakes, and to help each other, we just have to learn as much as we can. This means that we can help ourselves to be well, and if we have a receptive doctor, then we can help them to learn and do better also.
While I agree with you in listening to your body, tests are used as a GUIDE. In this case the OP is doing things arbitrarily and then asking for help.
The OP may actually be able to convert T4 into T3 so may not need T3 at all. No one can tell because we don't have any test results.
Alternatively they could have deficient/sub-optimal levels of other vitamins and minerals, and this may be causing them to have the symptoms. There are posters on this forum once they have sorted out a deficiency in a vitamin or mineral find they are fine. Again no one can tell with the OP because we don't have any more information.
I'm going to gp in 2wks to ask for up to date blood test and looking into going for private test as suggested
Yes, I agree with you - tests can be used as a guide. That's actually what I said - I just used slightly different words to say the same thing. (They can "give you an idea of which way to go next").
By the way, what does "OP" stand for?
OP = "original poster"
I was just disturbed by you saying test results are false readings when in fact you meant test results are only a guide.
I had to learn in my first job using email that words look different written down compared to when they said.
OP and many, many other abbreviations and acronyms may be found here:
dl.dropboxusercontent.com/u...
[ I absolutely refuse to add "yday" that I have seen several times recently. Sorry folks, that's my final decision. ]
Avoidance of abbreviations and acronyms, and text-speak, is very much appreciated but it is also understood that some are necessary or inadvertent.
Anytime you feel nervous just stop and think what you were like before. Try lowering the dose, you can play around as much as you want and when you stop taking it it will stop having an effect so do not worry, play around as much as you need.
I was on 125 mg Levo and my doctor agreed to a T3 trial, he reduced my Levo to 75 and introduced 10 mg T3 daily. The T3 split taken as 2x 5mg throughout the day. The first week I felt extreme symptoms - I could not sleep at all was absolutely exhausted and felt very strange. After 2 weeks it settled down and I feel so much better just taking that small amount of T3, has stopped so many symptoms - I can think clearly, am much calmer, my skin is so much better. It is not an absolute cure but has really helped me. About 4 weeks into taking it I seemed to have a relapse and some symptoms returned but then did go again, so stick with it. I have been on this dose for 3 months now - maybe need it slightly increasing but due to have tests soon.
Maybe you're taking too high a dose of T3? I'm on 20mc but don't feel any different (apart from more normal like better brain function, less tired and foggy), a couple of times I took 40mc to see what would happen and I got the jitters and anxiety and was going 100 miles an hour in my brain so it is probably the level. T3 doesn't suit everyone... a lot of people who have been diagnosed with Hashimotos suit it and I was told by the Endo that if you react well on the T3 then you are a good candidate to try the NDT. If you don't need T3 then it might not make much difference for you in his opinion.
I've made an appointment with my gp but it's not for 2 weeks 
can you please tell me exactly what blood tests I would like them to do then I can get a copy and put it on here. Not sure how the gp will react whether she'll co-operate with me taking this on myself. I really hope so as I'm still putting weight on, hair falling out and dry scalp to name but a few things.
Cree - in my post above of 9 hours ago - I have detailed the tests that are required. If you need more information - please do ask
GP's do not always do the tests you require - so can you have them done privately ??? .....
If you find it difficult to cut up your T3 pills accurately you might benefit from using a scalpel. They can be bought from Amazon surprisingly cheaply. Don't buy a hobby knife kit. They tend to have oddly shaped blades. You need just a standard scalpel blade on the knife. I find each blade lasts months.
It takes a bit of practice to use the knife well. I use a chopping board and I cut pills while I am standing over the pill, not behind like you might be when cutting carrots. Do the cutting with a good light source too, to avoid shadows.
@humanbean, i bought a pill splitter from Boots (sorry if not allowed toadvertise). Makes a fiddly job easier, specially if, like me, you have clumsy fingers
Sadly I never got on with pill cutters. The blade fell off one of them. Another two I tried crushed the pills instead of splitting them. I tried the scalpel after that and (with practice) has proved to be the most reliable and least bothersome method I've tried so far.
Good point HB. I have bought 2 pill cutters and got crushed pills from both. Funnily enough my cat's thyroid pills cut just fine! Crushing and taking what you think is a 1/2 or 1/4 equivalent is not good when taking T3, it's very potent.
But, Cree, while this is not the greatest advice, remember that T3 has a half life of between 8 - 16 hours (depending upon info source) so if you took a too large dose in the morning and you have made it through to the afternoon - you are not going to have a heart attack! It will be mostly out of your system by the time you go to bed and next time take 1/4. I hate to write that but I did the same thing, I took a straight 12 mcg pill on day one (instead of start low and go slow!) and had the jitters 'til mid afternoon - and then it all calmed down.
I'd recommend being careful with T3 medication. It can be dangerous and that's why doctors don't prescribe with easily. Thyroid issues are in most cases secondary issues to something else that causes them. Especially if the thyroid medications don't work. I'd look into adrenal issues (like CFS or underfunctioning adrenals) and also liver and gallbladder issues. Underworking adrenals that are just too worn out and not producing enough hormones can cause the thyroid (and a lot of other things) to get sluggish. Also T4 is converted into T3 in the liver so if the liver and gallbladder are not functioning well enough, the T4 is not being properly converted either and the T3 levels are not ok.
Doctors don't prescribe T3 because a) it's very expensive in the UK (they prescribe it in France, where it's cheap) and B) they know nothing about it.
T3 is not- dangerous unless you grossly over-medicate. The OP wisely started on just 12 mcg. And when it didn't agree with her, she stopped it. That is not dangerous. She's being careful, and I very much doubt she's ever going to take enough to be dangerous.
And, on that subject, I took 225 mcg T3 daily for a while, and I'm still here to tell the tale. So, whilst I wouldn't recommend anyone else does that, it's not really as dangerous as all that.
Thyroid issues are certainly secondary issues - mainly from Hashi's - but getting a doctor to search for the main issue is almost impossible. It could be due to adrenal fatigue (not the same as CFS) but doctors don't understand adrenals - no more than they understand thyroid! Most of the time, they don't even want to test for antibodies! And if they did, they wouldn't know how to treat a positive result. So, I very much doubt if the OP is ever going to get to correct her under-lying problem, whatever it is. Therefore, she's trying to help herself in the only way she can, which is very commendable.
greygoose,
Doctors don't prescribe T3 because (continued) c) They cannot find "T3" in the BNF or their prescription-writing program. And don't realise that they need to look for Liothyronine!
lol OK, forgot that one! But, it's true! I asked a French doctor for T3 - he had no idea what it was! - and couldn't find it in his big book. Then I said liothyronine, and he looked it up, and said 'ah! OK. Cynomel, fair enough.' And then prescribed it for me. But, come to that, he didn't know what T4 was, either! lol
I had read about the dangers of T3 meds, but you could be right. You probably have more experience on that than me.
I think so, yes. T3 is no more dangerous than any other hormone. You need the right amount. Too much is no good, and too little is no good. But in the right amount there's no danger at all. People who write about the 'dangers of T3' just know nothing about hormones, and are probably scared of them. Most doctors are scared of hormones.
Thanks for all your comments, much appreciated I'll ask 
for the blood tests that's been suggested and until then I'll stay on my 100mc levo. Also looking into private blood test x
About six months ago my sisters Dr uped her dosage and she started having serious problems. She would stop breathing in her sleep and wake up in a panic, she was having heart problems. It took three months for the Dr to figure out it was from overdosing her on the thyroid med. It leaves perm heart damage so stop medicating before you do permeates damage or worse
I've ordered a blood test kit from Blue Horizon So by the time I get it and send it off the results should be in in time for me seeing gp. Feeling happier about it now that I'm doing it all above board but it's so frustrating the lack of gp support for us and it's no wonder we try to help ourselves. Also going to ask to see a different Endo as I found the last one abrupt and I felt like a fraud :/
I've had my bloods taken privately today so I think the form said it could be up to 3 wks for results.
Thank you, didn't appreciate that and it wasn't any of that my just husband he didn't want to give his bank details To anyone and am pleased it is a reliable source as need to do something. Thanks again, Roni.
• in reply toRoni1
It's much less "dangerous" to give your bank details than your credit card to someone! Nobody can do anything with your bank details. But if you still don't want to disclose anything about yourself, you have services like Western Union or MoneyGram. I am ordering from the same supplier in Greece, completely reliable.
I've been on T3 for 13 years now, and it keeps me alive! Try taking your T3 in 2 tranches. in the morning and then mid afternoon, its an instant
Where do you buy your T3 is it overseas?
Not what you're looking for?
You may also like...
Hypothyroid, T3 levels vastly off
hey, so, i was diagnosed with hypothyroidism a couple of years ago and have been trundling along on...
T3: Pills, Potency & Brands
June 2019 after good advice on here I took T3 and gradually built upto 100mcgs T4 & 18.75mcgs T3,...
Tapering off T3
For those of you who have seen my posts over the past few months you'll know I've been whining...
Problems with T3 treatment
Hello
I'm writing to see if anyone can offer advice. I'm hashimotos hypothyroid, 5 years and have...
T3/T4 and NDT?
Currently awake with another migraine. Feeling awful, my fatigue is getting worse I'm in bed at...
Data to support 120mcg T3
T4 Again or with T3?
What strength would you say Greek T3 is compared to UK T3 (when not a dodgy batch)
T3 and where to get it. I read here that Turkish T3 can be bought, can you help please?
