OK, a HUGE question; if I could somehow obtain a prescription for T3 Ctomel or whatever the name...how much do I need??? This is really, really important!!!!
Today, I happen to have an appointment with my General Practicioner aka doctor to have her sign off on my carte vitale paperwork. However, since she referred me to the endo who really didn't help me aprprox. a few weeks ago. Maybe, just maybe she might ask how I feel??
I wishful thinking ..think I might be able to tun it into an opportunity to see if she would write me the prescription-ordinnance for T3???
I'm not sure how I could pull it off, maybe beg, plead, cry ....I don't know BUT she seems to write prescriptions easier than the endo so maybe I could covince her somehow to do the favor of writing me the prescription??
BUT HOW MUCH WOULD I NEED BASED ON YOU EXPERTS OUT THERE????
I read I only need a wee bit of T3 since its 4 times stronger than the inactive T4, but I have no clue as to how much if I'm taking
100 levo or perhaps more in the very near future.
PLEASE HELP!! I'm racking my brain now thinking that this might be an opportunity to get T3 but I have to be prepared to say the right amount, to get an effective dosage thus prescription.
My hair is worse now everyday. It was growing a little bit, but unfortunately, even though I know early...this horrible T4 levo is sucking the life out of it. I know you guys might think I'm crazy but in this short time the effects have been dramatic!!! I am convinced besides all the other factors my levo is the culprit!!!!! I can't even where it down now. Before, I had Shakira curly hair now I look like a sick rat!
All my ends are becoming so thin they are transparent again, its lifeless, and I am so concerned!!!
I'm looking again like as my daughter says like I am going through chemo.š
Please, please, help me.What amount of dosage would you guys guess for the T3???
Agh, this is horrible! Begging, and worrying like this just to get a Dr. to listen!!!
Counting down and praying for a quick response as my herb is tickling my brain here at 3.30 AM!!!
I hope someone can read this before my appointment in approx. 7 hours from now....ohhhhhh please, please.
Written by
Enfrance
To view profiles and participate in discussions please or .
I was originally on 200 T4. I am now taking 75mcg T3 which I believe is the maximum recommended dose but I could be wrong.
I'm sorry you haven't had any replies yet from more knowledgeable people but if it's any help I started on T3 VERY slowly by adding 1 x 25mcg T3 for every 50 mcg T4 I dropped. I felt awful at first but slowly started adjusting. Many members advised me to take it even more slowly by 12 1/2 mcg increments and smaller drops of the T4 but I waited about 4 weeks then went up again to:
50 mcg T3 and dropping another 50 mcg T4 (a total combo dose of 50 T3 and 100 T4)
Good at first but I started to feel hyper about 5 weeks later so dropped the T4 right down to 50 only but maintained the 50 T3. By this time the weight I had gained after a year of trying to adjust to NDT was dropping also.
After 4 weeks I have completely stopped T4 and am now taking 75 mcg T3 only. Most days I feel great and I'm losing weight after putting on 6 kilos on the NDT (Armour). It has been 2 weeks now and although I'm a little shaky now and then it's becoming less and less. BTW I take mine all in one go at around 1-2am when I get up through the night to go to the loo! Others who are dosing by circadian rhythms take theirs at around 11pm as there is a natural surge through the night. There's an interesting article link in an old post by Rod if you do a search.
Interesting to read your post. I have just seen Dr P who has started me on T3. I feel terrible though - bad headaches, slight nausea and terrible brain fog/spacey feeling - and thats only on 15mcg a day - split into 5 x 3 times a day. I was on 75mg of NDT which he told me to drop down to just 15mg - seems a big drop to me. Not sure what to do now as feel so rubbish. Tried taking 10mcg in one go yesterday and could not drive! Dr P said that it was up to me to find the right dose - which seems a bit off considering the fee I paid him!
Hey there I'm certain there's literature supporting higher doses and Shaws has previously quoted Dr Lowe who advocated one dose to 'flood the synapses'.
I have had notices of others taking much higher doses than my 75 mcg T3 so in time I might need to go higher as my body adjusts.
It sounds like you might not be taking a high enough dose or the right combo. Very frustrating! Warm wishes for your improving health for me after 37 years on T4 I have learned to take things one day at a time. So I think I will go higher in time.
I'm trying T3 alongside my NDT off and on. I wish I could flood my synapses but more than about 10 mcg T3 and I'm off like a rocket, and it is short-lived. I find I can take 5/6 mcg doses when I am feeling low thyroid - wise. So, for example, I have had a few exhausting days and today I pushed and really slumped. I don't mind slumping and resting it off but when a slump is accompanied by a few other unpleasant symptoms I'll have a small top up of T3 and keep the NDT on a stable dose for as long as poss. I keep seeing we are all so different in ranges of tolerance and the dreaded pooling or rt3 thing. My pattern is that sometimes I just feel like I've run out of thyroid hormone. .....but I have a lot to learn. I can't ever imagine getting to the point where I just take a permanent set dose. Nor do I understand how that would work when our bodies would make it in varying amounts naturally.
How we feel makes sense but I would desire a bit more in depth discussion than that from the specialist. Might as well self medicate in the first place if that's the only guidance on dosing. I hope Mr P reinforced monitoring heart rate and temp etc. I also keep l carnitine by me if I inadvertently over-replace.
Good luck with that it took me a year and I will try raising the dose again if this sense of well-being starts to slump. Sometimes feel like a top up during the afternoons but I'm still working at 64 so maybe we can't have everything. Lord I would love to experience 'normal' whatever that is. x
And well done for working still. I am 60 and still doing a very physically hard job making furniture and sculpture but in a quarter of the time. That said, I was practically housebound before hypo t was revealed. And tiredness was the least of my symptoms. I think it takes real dedication to find the sweet spot and do all the other good things...and pacing (ahem). We carry our thyroid function in a bottle ! XX
I went self-employed a few years ago and it has paid of in terms of flexi-time. I think emotionally draining and full-time is probably the most demanding of all x
Hi Middle, here's my experience with switching from Armour (one grain) to T3 (25 mcg). I stopped Armour completely in one day and began T3 (split my 25 pill into 3 pieces) took one piece each day for three days and then two pieces each day for three days. Since I wasn't having any symptoms I continued that way to a whole pill in a little over the week.
I guess I figured that since the T4 in Armour didn't seem to be doing me much good, I would just dispense with all of it except what was remaining in my system during the two weeks or so I was making the switch.
I'm my own doctor so I don't know how many rules I broke but I'm doing well enough though I managed to raise above the one grain which was my original goal.
That's great - very pleased it is working for you and that you are brave enough to tackle it yourself! He said to drop down to 15mg NDT and take 5 mcg T3 which I did for a few days but felt so bad I had to ring him. He now say stay on 15mg but increase to 10 mcg T3 and review/increase again in 10 days. I took 15 mcg yesterday and today have the mother of all headaches and severe brain fog today which not even paracetamol touches!
Maybe I should take a leaf out of your book and stop the NDT and just try a lower dose of T3 as you have. Maybe I have to go up more slowly.
I'd be tempted to do that. I really don't know what the harm would be. You could always increase a little faster with T3 if you feel the withdrawal of T4 is causing too much of a drop. I didn't have any symptoms like that but I think I've had headaches when I've gone low at other times.
Hi helbell, I've been thinking about that very thing. I know with diabetics, when sugar goes over a certain level although in some ways it feels good, nerve damage from the high level is taking place. I don't think that damage is reversible.
I'm thinking when thyroid levels are not good, there is irreversible damage also.
That's why I don't like having posters wait and wait on GPs who refuse to take action.
Exactly. When I think how ill I was for two years before anything showed up in the lab tests. It will take a long time to recover including the damage done to my nervous system. Yes, the thought of hanging on my GP's say so...eek.
I was checking your old posts and found the Phoenix Rising website about supplements. I've tried many different brands and wondered about a good B complex. Very helpful!
Most people starting the active b12s and Metafolin will have low potassium symptoms which can include unusual spasms, muscle weakness, mood and personality changes, nausea, heart palpitations and a long list of other possible symptoms which makes it difficult to identify.
Thant's interesting - I could tick off all of those as some point, is that an adjustment reaction to those. I'm slowly working my way through tests. I don't know if it is a placebo but with the burning pain I found the mag carb drink a magical antidote. Something to do with lactic acid added by Marz...I think. Another thing, is fancying that when I let my B12 intake slump numbness increases.
I was always a little worried about potassium as it's possible to overdose when taking daily. I think I would only take as needed. Magnesium is not like that at all.
I am in the same boat as you - having just been started on T3 by a private Doc. I too was on Levo 2 years ago but got worse and worse so I figured that I was not able to convert the T4 to T3 and decded to go down the NDT route.
Have antibodies tested for Hashimotos? Also your adrenals ( saliva test) for adrenals fatigue? I decided to get my iron tested ( you need to be in the upper end of normal for women - it helps you convert T4 to T3 ). I started the iron ( Solgar Gentle Iron ) and surprised to find that within a week my hair had stopped falling out. Others on here are very knowledgeable and will probably ask you if your Vit D, B12 and Magnesium, and Selenium levels are ok.
This new private doc told me to do a urine test to see if I was converting - even though my thyroid blood tests look normal. It showed a very low T3 - confusing as the blood tests look low end of normal - hence starting on the T3 last week.
I am struggling even with a very small dose of it and feel very shaky so be careful if you do use it.
It's a minefield I know, and very expensive if you go down the private route, but what can you do if the GP's/Endo's can't or won't help? I'm sure you will get some good advice on here - they certainly know a lot more than the GPs!
I have no thyroid- I needed 150 t4, or 60 of T3, currently I take 112.5 thyroxine and 30 (half tab 3x per day)T3. you might have more luck getting T3 added rather than T3 only. Sandy
You need to read the book Recovering with T3 and also join the FB group of same name. You will get all the info you need there. For today I would maybe ask to start on around 50mcg, taken in three divided doses thru the day. You don't have to start at that level. Doc is right that you have to figure out your own level and routine as everyone is different. 75mcg most Def not maximum dose but prob about the average. I'm currently taking 50mcg at 3am, 10.30 and 6pm. Good luck.
Have said this before but will say it again, my advice to anyone who knows they can't take T4 and needs an alternative is to write a letter to your GP (cc your Endo) saying how ill you feel (regardless of blood tests) . Name the distressing symptoms if necessary and especially reactions..such as itching, hives, difficulty swallowing etc..fatigue obviously!. I did this and said I would no longer take any T4 because it was too distressing. So..either I die or we come up with an alternative.. after that my very unhelpful Endo gave me T3 .!!
I am now, after 2 years back on a liquid dose of T4 combined with T3...my choice because I have tried Armour(which the Endo has said he will prescribe!) and also could not manage T3 only..too many brain spacey feelings. Basically I now have permission to do it anyway I like..on the. NHS. It's not easy (understatement) but I feel as a group we need to stand up for ourselves . It's sad because as individuals we have very little power and I was repeatedly told that I was 'weird' and 'different' because very few people have problems with T4. We sit there alone in the office of an Endo who basically only cares about diabetes and treats you like you are a hypochondriac or hysterical..surrounded by students and nurses, trying to plead your case without appearing hysterical. Catch 22 .thats why I think writing is better. Get clear what you want to say. I,e this drug is not working for me, full stop. I would like to try this. Good luck everyone.
Hi, just wanted to say I used to have those spacey feelings really badly, now I inject Vit B12 they have very much gone now. I've heard others taking B12 say the same thing. I used to get those feelings like I was floating and not connected too. For many years I thought it was depression. With me it was low B12. Are your levels good?
Well, you ought to sort out all your vits and mins, not just the B12. And if taking B12, you should also take a B complex, to keep them balanced.
Yes, my hair did start to grow again with NDT. That was the only advantage for me! I put on so much weight, and felt ghastly on NDT. Which is why I'm on T3 only, now.
Yes I have had b12 injections in the past and have some drops at the moment but maybe I am a bit sporadic with taking it. Thx I will up the dose because I hate the space feeling. When you say you inject B12.. How do you do that? I was getting them from my GP for a while but she stopped them when my B12 got really high.
Hi Candlemas, your B12 can look high if you've been having injections, but if your doctor stopped them your B12 will quickly fall again. My daughters GP did this to her and within 3 months her B12 was back in the 100's. So no if you have any problems absorbing B12 they shouldn't be stopped. You don't absorb that much B12 from tablets, I was told about 10%. I inject myself, my GP didn't give me sufficient loading doses and I got fed up of her ignoring the guidelines I had taken in. I get my needles and syringes from medisave and buy methylcobalamin online. I like to have the control! My previous GP gave me the wrong type of b12 and a really low dose 12 years ago when I should have had injections for life, so the trust has gone and I have painful nerve damage now.
Thanks again. I take methyl cobalamin in liquid drop form on my tongue..bought on line. Have to say the injections were pretty painful but I will give it a go. Thx for the info.
Thanks. Yes they are actually slightly higher than normal. I take extra B vits including B12. I reckon the T3 must have an effect on the brain maybe making it swell??
Yes I was supplementing. Didn't know GP was going to test for it at the time. I have just read that T3 can cause dehydration - so maybe that is what is causing this bad headache ( bordering on migraine ). I am not sure if I should take any more today but don't want to go hypo.
That wouldn't be an accurate B12 reading then. I think you have to stop supplements for at least 2 weeks before having a blood test.
Dr Skinner told me T3 causes headaches for 2-3 weeks when you start it. I still get them though! Drinking enough water is so important, you hit the nail on the head!!
Ah! Thank you. That helps a lot to know that it does happen with T3. Another glass of water then. I have noticed that since being on the NDT I have lost weight but it seems like it is more fluid than fat. Must be the T3 in that. My wrists are really sticky now and my watch is loose!
Hi middle, on NDT I lost all my mucin, and facial swelling. I also lost weight. I'm on T3 only now and have gained so much weight
GP's use hydrocobalamin is it? Anyway it starts with hydro I think! They sting really badly!! Now I do my own I buy injectible methylcobalamin and I promise you apart from the needle going in they are painless. I inject into muscle on my thigh. I was a so apprehensive, but once you've gotten over that barrier injecting isn't a problem! I pay about Ā£18 for 100 needles and syringes plus alcohol wipes. Also Ā£15 for enough B12 for 30 injections.
That's strange that you have gained weight on T3. I gained lots on T4 hence switching to NDT. T3 is the active bit in the tissues so shouldn't it have the opposite effect? Sorry to hear that.
I know! I thought the weight would drop off with T3. It was a last resort for me, I can't say I've done well on any thyroid med. I'm probably taking a lower dose than when I mixed T3 with NDT. I think my adrenals have really taken a hit on T3. My cortisol is very very low so the last thing I'm trying now is hydrocortisone. After being on it for a month now, I haven't found a huge difference yet. I think I'm very resistant. I'm taking a drug for my bladder that is reducing stomach acid, I know this is causing me a lot if problems so I'm at present weaning off it and increasing my second bladder drug. I don't give up easily, but I'm in my 4th year now, so it is getting a bit wearing!
Oh gosh - sorry to hear you are having such problems. Yes, I have no idea until recently how delicately in balance so many other things has to be in order for the meds to work properly. My brain fog and jitters are really bad today! Good luck to you.
It's a very fine balance, and I haven't found it yet! The only thing that has made me feel a little better is iron. I could throw everything else in the bin and not notice lol!
Me again. You mentioned bladder. Are you a lady of a certain age like me? If it's for repeated bladder infections due to lack of oestrogen - I suffered terribly post menopause, until my doc put me on Ovestin cream. No problems since.
I have interstitial cystitis, it's an incurable inflammatory disease of the bladder. Not easy to live with.
I'm 58 and I know lack of oestrogens cause problems, infections and stress incontinence. It's great the Ovestin has worked for you so well, what a relief for you!!
Ah - that's a real bummer for you. Yes it has helped. Since last bad attack I have learned to avoid any carbonated drinks and always have a pack of D-Mannose handy! All the best.
I've had it diagnosed for 12 years now. But had 5 years suffering previously. I follow a low acid diet, carbonated drinks are definitely on my list of no no's Too! I stick with still mineral water, the chlorine in tap water causes me pain.
I did this...and both GP doctor and Endo...blew me off saying I was normal. Despite writing it all in french...unfortunately...but perhaps next time that is if there is a next time...I will mention the dying part!!!
Sorry to hear that Enfrance. Obviously you know you can buy Liothyronine from abroad?. I actually did stop taking T4 which I wouldn't recommend but I was fairly desperate. I wish we could get together as a group and tackle the Endo society. Their attitude towards us is appalling. I wonder what happened to the Hippocratic oath saying 'First do no harm?'
Glad you have found a combo that suits you. Never heard of liquid T4! So presumably you can convert it then? I have the foggy,spacey brain on this T3 as well all the time, and I've only been on this stuff for 2 weeks - does it wear off as the body gets more into it's system I wonder? How did you feel on it.
I still am not sure if I can convert T4 to T3 or not based on the urine test. I don't see how that can be a deciding factor but there don't seem to be any other tests that you can do to prove it. I do know I got very much more hypo when I was on Levo hence me deciding to try NDT 2 years ago. I feel permanently slightly drunk on just 10 mcg split dose of T3 but Dr P just keeps saying it's safe, has no side effects or allergic reactions, and to carry on! Everything has side effects in my book.
Yes there is liquid T4 AND liquid T4 in capsule form. The whole thing is a minefield with a sort of M15/ mafia NHS in charge who fail to tell you anything because at the end of the day they believe we are all in 'somatiform' which they can justify with 'normal ' blood test results. The fact that the blood tests don't show conversion rates nor side effects is quietly ignored.
So I haven't really found a combo that works....just using myself as human guinea pig as usual. I find that a combo works for a while and then breaks down..because after all we are dealing with powerful hormones here. I find the spacey feeling intolerable even though I have more energy. For me it has something to do with the gut brain link. I am diagnosed with gluten ataxia..and sadlyT3 has much the same effect. So despite my desperation for energy I can only manage very small amounts of both. Other people can tolerate much more and the spacey effects diminish with time. As we know...it's a personal individual thing. Right now I seem to be converting T4 after 2 years of not being able to convert it. I take selenium and B12 etc but I am aware that as it builds up in my system it may pool and convert to reverse T3 again..sigh as my adrenals get exhausted. Both NT and T3 only have turned out to be too powerful for my system though initially I was thrilled with the effects..so I have had to start again. Good luck.
Ah - I understand. Thanks for the reply. Yes - I must say I am getting tired of being my own guinea pig - 20 years is far too long to be unwell. I'll hope i get this sorted before I get too old to remember to take my meds - but then I'll die anyway! Best wishes.
If I were you I'd ask for the maximum which is apparently 75mcg on the NHS. This will give you a really good chance to play around with your dosage and you won't have to go back and ask for more. Good luck. x
Hi enFrance, silly question but are you in France? (libre T3 . . . ) me too and am trying to work with my GP who wants to hand me over to an endo, but I haven't found one who understands these issues. Where are you located? Also, the cynomel here comes in 2.5 microgram tablets - is that what you are getting?
"My mercury levels were too high, but the real problem seemed to be a ferritin count of below 30. That didn't mean I was anaemic ā I am not ā my functional iron is fine, but the body uses stored iron for hair growth. I called my GP again. Her voice told me I was a time-waster. She assured me that my ferritin was within the "normal" range. "It is nowadays," Michaelides said, "because they keep lowering the range of what is 'normal'. What is certain is that below 80 you won't have healthy hair." Why be healthy when you could be normal?"
Thank you. I totally agree with you. I want to get to 80 or even 90 if possible even if it takes me the rest of my life. Mercury levels...maybe I should check as I eat ALOT OF FISH!!!
Excellent article. Well, as for the Harvey street type consultations...mmm but I have been using natural progesterone cream for a number of years. It was the only thing that suppressed my hot flushes. I will get my hormones checked one day...ducks in a row is difficult re cost.
T3 is also called liothyronine. Gp's are allowed to prescribe it but probably don't like it cos of cost! Just ask to try it and say you think your T4 is not converting properly to T3. Good luck with your appointment.
It's not expensive in France, hymermad. About ā¬3.5 for 30 tablets. The problem is, most of them Don't know what it is!
I am on 200 thyroxine and 20 T3. I still do not feel right, still have no energy. I was not aware that there was a limit to how much T3 that the NHS could prescribe. Mine is prescribed by endo, however, I saw GP yesterday and she said that I am probably the only on in the practice on T3. GP's cant prescribe it, I am told, and its only that I am under the hospital that I got it prescribed. All the endos in my area don't use it. So its lucky I got prescribed it when I was living in Cardiff a few years back, now still with the same endo.
Enfrance, Don't ask for T3, because she might not know what that is. Ask for Liothyronine, then she can look it up in her big book.
Just ask for one tablet at a time, Don't frighten her with big numbers! If she's willing to prescribe it settle for one 25 mcg tablet a day and see how it goes. If you still need more, then ask after a few weeks if she will increase it for a reduction in T4. One step at a time.
Okat, forget it all. I was rejected!!! My GP gave me an ordinnance for the 100mg horrible lev T4 that is leaving me bald.
After alot of pressure she was about to call the horrible endo I saw to confirm the levo amt of 100mg and the T3 as she said it was not her area of expertise.-SHE DID PULL OUT HER BIG BOOK!!!
I changed the subject quick as I was able to get a prescription for a complete 100mg of which my endo didn't authorise, and she wouldn't give me the T3...not her area, and I am still normal blah, blah....despite my speech on NOT coverting T4 to T3 well.
I even showed a article written in french on a low T3 and high T4 aka conversion problem.
She disagreed saying a high T4 would be like a 12. And the T3 wasn't low but normal!!!
Well, it obviously isn't her area of expertise! Trouble is, it isn't anyone's!
Your FT3 is very low, not at all normal, but they just Don't understand about the ranges. They Don't know how they are arrived at and believe that Moses brought them down from Mt Sinai etched in stone! I've tried that arguement before, to no avail! BUT, on the other hand, your ft4 is so low that you Don't have very much to convert!
So, at least you got an increase in the dreaded Levo. That might just work...
In the green bar at the top of the page, next to your name, there is an Arrow. Click on it, then on Messages. All your PMs will be there.
Meant to add, I have UK liothyronine and I also have plenty of Cynomel (Mexican/Spanish) which I had ordered myself a while back. Used to get I think Cytomel (USA) ones on prescription but GP said they cost twice the cost of UK liothyronine. UK ones come in 20mcg tabs, Cytomel comes in 5mcg or 25mcg, and Cynomel only comes in 25mcg tabs, as far as I am aware.
Yep you're right.. I just checked their website and they now only sell the 75s of Triyotex. I ordered mine 18 month ago then went on an NDT trial which wasn't good for me, so I have 250x 90mg compounded NDT wrapped and in the freezer!
They're in date until the end of the year.
My doctor knows I'm taking it so will give me a script when my current supply runs out - it might have to be private; no idea how it works here in Oz, whether I can get it on the PBS or how much for private. (I paid $198 for 300 x 25mcgs from Mexico).
Do you know of anyone using the 75s from Mexico? I would buy that if it's cheaper than here - seems really cheap at $59 for 300.
That is cheap! But, sorry, Don't know anything about it. I think that question has been raised before, so do a search and see if you can find anything. If not, ask a new question.
Only just seen your message, as have no internet at home anymore grr. I will check it out on their site. Currently taking 25s though if end up increasing to 75s at some point that may be ok. Though, prefer 25s. Thanks for letting me know though
I saw my doctor yesterday who agreed she would provide T3 on a private script but if the imported 75s are cheaper than here shall continue to buy from Mexico. The quality is excellent.
BTW she couldn't get over how good I looked compared to before Christmas when I dragged myself into the surgery looking and feeling half dead. T3 has given me a whole new life and I can't believe it after so many years! I'm soon going to inch up from 75 a day and see what happens although I'm doing pretty well on taking it all in one go at 2am.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
for me after 37 years on T4 I have learned to take things one day at a time. So I think I will go higher in time. 
How much T3 do you take? 
HOW MUCH T3 DOES A HEALTHY THYROID SECRETE?
how much T3 with levo
How much is T3 in Turkey?
Adding back some levo; how much Levo to T3?
