Hi I'm not converting well and have been prescribed ERFA NDT by an endo, I not yet ordered and on reflection I have now asked for T3 instead (awaiting reply).
I asked for T3 as don't know how much NDT I'd need and can't afford higher doses long term. I also have to have it compounded due to multiple allergies and MCAS, so more expensive again.
I'm taking 112mcg levo atm, was prescribed 125 in winter but in March started getting palpitations so think I need different amounts seasonally. ( also have cardiology referral Oct).
With the NDT he wanted me to drop to 50 which I think is a big drop of T4. I'd read here on posts that certainly for T3 meds, it's better to keep on current levo dose or only drop a little . Is that correct please? Thankyou!
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Opal79
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The NDT - only half a grain (30mg) so by my calculations and others that's only approx 68mcg T4? Which seems very little abd I don't want to worsen as he only wants to titrate every 6 weeks thereafter.
T3 meds and FT4 - he wasn't going to test me first but I asked for it. Awaiting results but hard to get them as his secretary off sick for a few weeks!
He didn't ask for my most recent bloods, but the last ones were were 29th April after I'd dropped down to 118mcg on 15th march. They were medichecks tested 29th April. Results were -
TSH 0.918 miu/L (0.27 - 4.2)
FT4 21.2 pmol/L(12 - 22)
FT3 3.2pmol/L (3.1 - 6.8).
(Incase needed, my TSH was also tested the wk before via gp on 22nd April and was 1. 02)
(Also incase needed ,on 5th March, pre palpitations and while on 125mcg levo my GP tested my tsh at 0.69 but won't do FT4/3.
Titrating every six weeks is the usual way of doing it. So, that's not surprising.
Your FT4 is very high, and that's not good, so some reduction is necessary. But, I agree, going down to 50 mcg is a bit much. But, there's nothing subtil about an endo! They like to go at things with a sledge hammer!.
Don't get hung up on the TSH, it's pretty much irrelevant at that level. Doctors are so wrong in thinking it tells them 'all they need to know'. It doesn't show them much at all.
Please can I check some other things? I understand if not but thought I'd ask incase.
I'd spent most of last year on 100mcg (dx June 22 after suspecting decades if hypo and hashi). And TSH was usually around 1 since March '23 so I put up with things, and FT4 around 19 or 20, FT3 always low normal.
I'd lost alot of weight since 2019 too, unusual for me, and I got a much needed P.a dx last July from private dr, so started injecting b12 even other day. But around late summer / early autumn, started putting on weight quickly with no dietary changes - 2½ stone in a few month's and can't shift it. It's normal for me to struggle with weight but def worse now. I wondered if treating the PA revealed my thyroid still far from sorted? Endo did agree with this.
Anyway Nov 23rd last year I took medichecks as getting worse fatigue, hair loss again and TSH was 2.3, FT4 was 20.5 so both creeping up, and FT3 at 4 despite no change to levo or anything. So it looked like 100mcg levo wasn't working for the winter and GP put me on 112.
Nothing changed in my Jan TSH results (couldn't afford FT4/3 again so soon) hence increase to 125 and then palps jn March. I've always had slight palps but not often and been gaslit so much by GPs that I probably gaslit myself too, but these were terrible and went to A and E. Hence going to 112 but GP still thinks I'm on 125. Endo said 125 in his letter to them in July this year too but I did tell him what I'd done.
Where should I be with my FT4? I'd also read its mid range but if I'm taking T3 as well does it matter as much?
I really don't mind dropping my levo at all, I do welcome it but was just expecting a smaller drop and it has worried me! 6 weeks titrarion is fine but not if I've made a huge T4 drop and then getting symptoms from that, I can't afford to go backwards that far at this stage. I have a house move to do soon and feeling so ill with that and living in mould so have panicked by the drop. I'm more than happy to plod slowly with T3 but yes the T4 was odd.
I did email Endo to ask if levo could be a little higher but also asked about T3 instead. I'm hoping he will reply soon as I'm really feeling ill and palps are worsening this week. Not sure whether to lower levo abit more while I'm waiting ? The palps are freaking me out which doesn't help!
I'm also wondering about trying Roseway if the endo won't increase levo abit, is that worth trying do you think please?
Sorry for the long reply and extra questions , i hope it was OK to ask and I'm sorry it not answerable. Thanks very much again
Where should I be with my FT4? I'd also read its mid range but if I'm taking T3 as well does it matter as much?
8The level of FT4 a person needs with T3 is a very personal thing. Some people do need it quite high - about 75% through the range. Others only need a little. Myself I'm best off without any at all! You have to find out, through trial and error, how much you need as an individual. However, reducing levo from 125 mcg to 50 mcg in one go is just insane, because it will be such a shock to the system. We need to reduce slowly, just as we need to increase slowly. This just goes to show how little your doctor really knows about thyroid. Do you have enough levo in hand to be able to reduce more slowly? Taking a reduction of just 25 mcg to begin with, making your dose 87 mcg for the first six weeks, and see how you go with that?
I'm afraid I don't know anything about Roseway labs, but from what I've read on here it sounds brilliant! Certainly worth a try.
Never apologise for asking questions. It's the only way to learn. Hope I haven't missed any of yours?
Thanks so much, I was going to reply to everything but have just recieved this email from the endo this morning and even more confused by him!It is feeling very chaotic. I emailed him last week to ask for less of a levo drop and also to try T3 instead as a. Worried about cost as I titrate, b. Ingredients are a concern (allergies and mcas) and the reply I got this morning is even more confusing. I'd previously told him I'm on 112 levo. Reply pictured!
In the meantime his letter has gone to GP to reduce levo from 125 to 50 so I now need to ask her if she'll reinstate it as I haven't even begun the trial yet. No idea if she even will as she is awful and it took months of fighting to get my levo increases.
It was all meant to help but I'm feeling even more stressed than I was to be honest, as nothing is making any sense. Thankyou for your reply I appreciate it.
P.s. he also did Full thyroid panel plus D, ferritin and cortisol which i also asked for. He wasnt going to test but I asked for it first. I need to get results from him too, his secretary is off sick for a few weeks with no replacement!
Yes, a lot of people make the mistake of thinking I grain of NDT is equal to 100 mcg levo. But that is totally illogical because it depends on so many things. For a start, they cannot agree whether T3 is 4 times stronger than levo, or 5 times, or something else. And it's all wrong because they are totally different and not equal at all. T4 is a storage hormone that doesn't do much until it is converted into T3, the active hormone, so how can you calculate its strength. Plus, it would entirely depend on how well you convert. If you're a poor converter, it is probably more like x 1! So all that is total bull***t, and an endo should know that. And, on top of all that, he's prescribed Erfa which has less T4 and T3 than other brand of NDT.
So, it's not you that is confused, but him! But doubt he'd ever admit that.
Thank you SO much I feel like I'm going mad! He hasn't even replied to my request of trying T3 first either.
It's funny someone here on a different post of mine said ERFA is 100mcg equivalent but everyone else said what you'd said, so it does seem there's confusion with people but an endo 'should' know hey! I didn't realise erfa has even less than other ndt too.
He was even TUK recommended and by a few people in my local thyroid group, which gave me hope as I'd read such bad things about most endos - although the mod has a different experience with him but I hoped mine would be better. Not to be -I really feel like Im talking to a brick wall. I also told him I have m.e and fibro, and that changed his response. I was about to say I think it was thyroid and P.A all along , undiagnosed for decades. But he hung onto that and said because of that we'd never get thyroid perfect. There were other alarm bells going off in my head too but I was hanging on to the few positive experiences I'd heard from others.
I might try and ask him for T3 instead, as I also need to get my blood results from him anyway. Or maybe i shouldn't? If he says no to T3 I'll say I'm going to stay on levo as I cant afford ERFA at all anymore. Then at least I can get him to write to GP again and officially reinstate my levo to 125mcg.
Whilst I get on with Roseway which to be honest I'd rather do anyway now. My faith in him has gone,.he hasn't answered enough of my questions yet again! Thanks so so much for clarifying as I am so done in by the whole thing! 🙃
Thankyou. Sorry I forgot to say he also thinks I'm not converting which just makes this more baffling! He didn't ask to see any of my previous bloods either so I do feel as though I shouldn't have bothered really.
Will have a serious rethink on if I should ask him for T4, or just cut my losses and run. Just tell him I can't afford ERFA at all at the moment so won't be able to get it and can he write to gp again or something?
Would that be a better idea do you think please? No worries if you can't answer that, I'm trying to think through the fog of how best to deal with the mess he's now left me in at minimal cost to my energy / gp levo dose! Thanks again very much 😊
I don't think I'd want him writing to my GP! Lord knows what he might write!
Can you not just ditch him and have a word with your GP yourself, explaining how the diabetes speciallist - which I imagine he is - doesn't know a thyroid from a hole in the ground, and is likely to make you very unwell with his 'treatment'?
Thanks very much and sadly I didn't think to stop him writing to her I was so ill that day I coukd barely climb the stairs to the room and then was useless. I sent an email to gp to review saying not started trial yet due to allergens I see Immunology/Dermatology about so she should listen I hope! But she is so so bad herself, has been the epitome of gaslighing and contradiction to suit her agenda and I fought so hard for my levo with her after my nice (but abit clueless) GP left last year. She wouldn't understand what I say about him, I got the private referral from her begrudgingly as she was worried an endo woukd question her as they normally refuse testing etc with someone that has my levels. Endos in my area are particularly awful and she was def scared! So now a new endo might surprise her, but she will either dismiss him or agree with him . Hence my sneakiness about allergies, which is true, but also that now I need T3 I hope endo will write another letter but do i ask him?
I also asked for my bloods and have had this reply tonight -
"I will prescribe you T3 10 mcg
Do you still have the prescription of ERFA?
I did review your results and will discuss in detail when I see you. I gather I planned to see you in 4 weeks
Email is not the best way."
I'm still concerned as 10mcg seems alot to start on, he didn't say about the amount of levo to stay on and won't tell me my bloods unless I see him! I do have Benenden cover of one last appt so it would be free but ethically this seems sneaky. And if I don't see him I guess I can't ask him to wrote another letter to GP to ask her to reinstate full levo .
Bit confused as to what to do really, maybe see him once more then just go to roseway? am losing my mind as also today council made huge u turn on promised compensation for mould and neglect so v foggy! 😬 so sorry for all the waffle I hope it made sense! Thanks so much for all your help, I'm so grateful 🌸
Yes it made sense. But it's such a mess, isn't it!
Well, I know what I would do, I'd just ignore him and never go back again. He's a lying, scheming, blackmailing, gaslighting scumbag. And I've ditched better endos that him without a second thought! I now self-treat and to hell with the lot of them. No, he's behaviour is not ethical and it's not professional. But these medics think they're a law unto themselves. They're not interested in making patients better, they only interested in the money and stroking their own egos. You know what you need, so apart from writing the prescription, what do you want a doctor for?
Sorry for the rant, but they make me so sick. I'd shoot the lot of them! The hold us to ransom and then treat us like dirt. But I'll stop, now. Hope you find a suitable solution soon.
Aw no i hear you and totally agree! Im very angry too!
Had 100mcg levo today a f yesterday snd palps tiny bit calmer, also have my cardiology 24hour halter on 2nd October so be good to see if T3 has helped palps by then or not.
I still need to get them compounded so i guess its best to ask roseway first, compund and then see endo one last time despite my anger. This is only because this is my final free consult on my Benenden cover. Also i wont know my bloods from a fee weeks ago til i see him which ie appalling - but i cant afford to take more tests right now!! It would be good to see where i am level wise in summer months pre T3 and having lowered levo myself again from 118 to 112 . So for my own knowledge and mobey saving i will sadly have to swallow my ethics.
But then after that will get medichecks tests and consult with roseway presciber instead, i guess you cam do that after starting with an endo? Also it'll be cheaper than paying for endo which I'd have to do anyway after my free Benenden cover appt.
Also it may be a while I guess til I get meds and my endo appt is booked 13th Sept,though he thought it's in 4 weeks which it isn't!
OR there's 11th Oct booked too. Should I see him Sept or Oct date? His appts are like gold dust so no others available so wondering how long to trial t3 before I see him? If I start meds say next week it's only under 2 weeks if I see him in Sept. Or apx 6 if I see him in Oct. So thinking Oct better? Then get blood results and never go back lol.
So sorry for asking more questions and no worries if you can't answer but incase... I think I'll have to take T3 only twice a day only due to other supps and interactions through day, so probably first thing with levo then mid afternoon or something. Maybe do a few days of 2.5 each time then 5 each time or something? As I'm so sensitive to meds due to mcas.
Thanks for reading all that, hope it made sense as I'm really foggy! And for your support too, you're right about endos, it's truly shocking. Thanks again 🌸
Well, that sounds like a plan. But, I'm really not sure that taking two doses of 2.5 each is going to help much. It's such a tiny dose. But whichever way you do it, don't increase until at least the two week mark. You body needs time to adjust.
I'm so sorry for my very late reply, I also have P.A and been flaring badly. Since our last message the endo has gone from bad to worse! He told me his temp secretary will book an appt and she got in touch just saying endo is away now until next week (tomorrow now) and will answer my questions then (about prescription, bloods, letter). So who knows what's going on, couldn't make it up eh? Still have this Friday booked anyway so going to just see him to get whats legally mine and never be in touch again!
I wasn't sure about 2x 2.5 in terms of dosing but as I'm sensitive and have mcas thought it might be safer? Sorry for another question but please can I ask if you mean if I do it that way then continue for 2 weeks before increasing to 2 x 5mcg a day?
Also do I then give it 4 or 6 weeks until my next bloods and roseway appt? I'm guessing 6 if I need the full dose for 6 weeks first?
Thankyou so much for your reply and advice. Could I try 2 x 2.5 a day for a week or less or something? I only want to test it minimally really and defo want to get on 2 x 5mcg as quickly as poss.
Yes now I've had my first endo experience (as well as NHS endo who wouldn't even accept gp referral!) I'm largely sceptical that there's any decent ones out there! I was lucky to get a good B12 doctor but he was a rare find too. So bad that these illnesses are so minimised, or we are just used as pocket liners for their wealth at best it seems!
I'm sorry you've had to go through so much too and hope things are as well as they can be with your thyroid now. Thanks again I really appreciate your help 😊
You can increase to the full dose as soon as you feel ready. Then stay on that for six weeks and retest.
I think with my thyroid this is as good as it gets. Increasing my dose makes me feel worse, reducing it also makes me feel worse. So this is my dose. I just need to be stricter with my supplements!
Thankyou so much! So sorry but I forgot to ask, hope its ok to ask please?
Now that it'll be T3 (not ERFA anymore) with levo, if on 10mcg T3 how much should levo be lowered to, if at all please?Also if I do try, say 5mcg daily for a week first, will the levo need to be a little higher compared to when I take 10mcg T3? I don't trust endo with this!
(I'm only going on Friday to make sure he amends gp letter, I get my blood results and prescription then I'm off. He did test my cortisol at my request though so I'm hoping that's not why he wants to see me to discuss something bad 😬).
I'm not sure if that made sense I'm so sorry if not and to ask more questions!
I'm sorry to hear its been such a tricky balancing act with your thyroid meds, hope your level is a manageable one and you're as free from it all as poss. I hear you on supplements! I do take high doses of cofactors as I self inject B12, and I swear it helps thyroid too. If I wasn't injecting I'd probably be less strict too haha. Thanks so much again I'm really grateful 😊
As I said before, whether or not you should reduce your levo depends on your FT4 level. It was quite high in March, but that could have changed. So, you really ought to get your FT4 tested again before changing anything. But if you do reduce it, it shouldn't be by more than 25 mcg. Maybe less. Depends. But get the FT4 tested and post again to let us have a look.
However, I really don't think you need to lower your levo every time you increase your T3. As you're a poor converter, that wouldn't make any sense, because your T4 is not going to cause your FT3 to go over-range, however high it is. You just don't want to have your FT4 too high long-term because that's not good for you.
Not sure what you mean by my level being a manageable one, but I know I'm on the right dose for me due to years of experimenting. Higher is not good, and lower is not good. But any symptoms I might still have are being masked by the damned covid! I've had it twice and find it very difficult to get over - especially as the last time I got it, I was still recovering from a bad bout of flu! That all over-shadows the thyroid somewhat, and I don't even think about it! Difficult to know what's causing what.
Thanks so much and so sorry, I've been so foggy! I'm off to the useless endo soon, so I will find out my bloods from 12th August finally (same dose of 112 levo as when last tested in April). Thanks so much I will let you know what it was! I'm more symptomatic past few weeks so not great. Can't wait to get my prescription, gp letter amended, test results and run away from him!
Sorry re levels I meant your thyroid numbers and symptoms as good as they can be. Covid has been so damaging to many, I'm really sorry to hear how it's affected you 😔 yes its really hard knowing what's what isn't it? I've read B12 injections can help with post covid depletion even if you don't usually have B12 deficiency or P.A (I have the latter). Just incase useful! 😊
Thankyou so much! Where to begin, it's all been quite a shock tbh and long so I understand if you cant read/reply...
First of all in my previous message I said levo was 112 in April as well as August, but I got it wrong, so sorry im really foggy! I reduced from 125 to Jan 118 in March (as got oalps in March) so my April results was based on 118.
I then reduced again to 112 in July when the palps got abit worse again. So Aug test is while on 112 a few weeks.
As for today, endo is writing to gp to reinstate 125 levo for now, and written prescription for compounded T3 instructions to take to roseway. I finally managed to get my results - he said hed print them out then when i asked at reception they said they cant relase them it has to be hkm 🙄 So i waited until they caught him after his next patient! So as you'll see attached - my TSH seems OK although I'm better at 1 or tiny bit under, my FT4 is abit better, lower, but FT3 even lower again. Happy with my ferritin and I take heme to keep it up so a good level for me.
He also said D is too high - I explained I'm taking high dose (10,000iu with 200mg K2 and 500mg magnesium) to support B12 injections . He said its too high and to now take 1,000 or it could damage my kidneys???
Normally I'd ignore that as I'm following a protocol to prevent damage however - more importantly and worrying is my cortisol result. Took test 8.30am and as you can see is really low. I wonder if this is why he withheld results? (Saying this though I still think he's abit rubbish and wants his money more) . Regardless we now need to rule out Addisons and I'm terrified as it's so, so low under range and I've been feeling so ill for so long now. I'm under huge amounts of stress but wasn't expecting that. Also, if I do have it, the treatment is hydrocortisone which I'm in a rare % of people that actually have an allergy to quite a few of them! You couldn't make it up!
I have to get a short synacthen test next week - again need to research allergies of the drug / excipients and discuss ahead but the senior nurse was really helpful today about all that and gave me some details and I'm calling ahead too, she will tell them I am, so that was something. My Benenden should also cover this test and follow up as it's a new thing separate to thyroid, and I don't habe much money to go private elsewhere so I think I'll need to stay with him abit longer.
I was the one who asked him for cortisol test as I had a feeling something was wrong. I don't suppose you know anything about all this at all please? No worries if not.
Either way, he doesn't want me on T3 until I get the test done first, plus he wants to reduce levo to 85 I think? His reasoning was T3 10mcg is equivalent to 25mcg levo or something? Anyway I made him revert letter to gp and said its hard to get her to change levo script all the time so he made a note to do that at least.
I just said I'd follow his levo instruction anyway but I guess I don't have to as long as I get my 125 dose from GP. Either way I'm now not able to run away from him as I hoped, as I need cortisol dealt with first!
He was good about that to be fair, judging by what local thyroid sufferers know about him (and some have had great results with him, some not!), I think he's very overworked, quite bsent minded, delegates an awful lot to other staff and wants alot for his minimal time! But I made sure he did the other stuff and he was cool about it - probably as he was getting paid! It's still not OK of course and I'm still in alot of shock about cortisol though, trying not to freak out.
Thanks so much for reading and no worries if you can't reply or anything, thanks very much again 🌸
Yes, your cortisol is low, isn't it. What time of day was the test done?
I had very low cortisol some years ago, bottom of the range, but not as low as yours. And not low enough to test for Addison's, apparently. Anyway, I didn't get the test. But I was prescribed HydroCortisone for a couple of years, and then was able to wean myself off it.
I shouldn't worry too much about your vit D if I were you. I don't think it's high enough to affect kidneys, it's only slightly over-range, and ranges are arbitrary, anyway. You just need to reduce your dose to a maintenance dose so that it doesn't drop again.
Thanks very much! It was done at 8.30am. I do go to bed and get up very late as my circadian rhythm is all over the place the past few years. So 8.30am is generally very early for me. So I wonder if that may be why, or it may not work like that at all of course!
Thanks for the info and advice, I'm hoping i don't have addisons or need cortisol seeing as most of it I'm allergic to! 😔 Good news about vit D, it does seem strange advice and from what I know with K2 and magnesium it's safe and gets locked into the right places. Thanks again
Are you sure Roseway do compounded T3? I've never heard it mentioned before. Why can't he just prescribe ordinary T3?
His reasoning was T3 10mcg is equivalent to 25mcg levo or something?
That's a load of rubbish. T4 and T3 are two different things. It's like saying two apples is equal to one banana. T4 converts to T3, when everythings working correctly, but how much T3 gets converted from how much T4 is debatable and pretty certain it varies from person to person. I really don't see how you can calculate it. And, if you don't convert, 25 mct T4 is equal to zero T3. They really should make the decision to reduce or not by looking tat the FT4 level. If it's over-range then a slight reduction is probably advisable, although taking T3 will reduce the FT4 anyway. But reducing the levo of someone with mid-range FT4 by 25 mcg is more than likely going to be too much and leave the patient feeling worse - although, there again, how much T4 anyone needs when taking T3 is a very individual thing. But they will insist they just have to lower the levo when adding T3 without really understanding why.
As I said before, ten mcg might be a little much to start on (which is another thing they just don't get!). If you can split the tablet, or whatever, it might be better to start on 5 mcg for a couple of weeks.
Ah ok! Thank you for that information. I thought they just supplied other makes of T3. You don't happen to know if they supply to other countries, do you?
Ah thanks again. Roseway can compound meds so I've asked there due to my excipient allergies. He prescribed standard but I need compounded which he agreed to.
Thanks for explaining the t4 t3 thing, I was very confused! Yes I'd rather stay on my 123 or maybe drop to 100 rather than 85...but I think his aim is to keep increasing either or both as time goes on. He does also work for NHS and they watch him closely so I think this is why he is like this. But of course I was going to get my things this time and leave but now I'm stuck with him for longer due to the cortisol thing! Of course he has also said don't get T3 yet until I've had my synacthen test, I hope it's safe to take levo like this atm? Am very worried about tbe whole thing. Thankyou so much again 🌸
Nothing safer than taking levo. It's never killed anyone - unlike some of the drugs they prescribe! They are terrified of hormones, but they'll happily prescribe some of the nastiest drugs you can imagine. They're terrified of the wrong things
Also to add here that I actually took notes of appt and endo actually said 10mcg T3 (my starting dose) is the equivalent of 50mcg T4!! 🤯
My original gp prescribed dose was 125mcg which got my TSH to a good level but it increased FT4 too high and FT3 still too low. So I took myself to 118 then 112mcg when palpitations took hold and endo knows this and was supportive of that (ar least its something haha). So says we add 10mcg T3 and drop levo from 112 to 75 as equivalent to 50mcg!
So, he says combining both 75mcg levo with 50mcg equivalent T3, will equal my original 125mcg total.
I feel like I'm going mad here really! Surely I either need more T4, or more T3? I feel like levo did help me abit but once I got to 100 it did very little. I'd rather try levo with T3 first of i can to avoid T3 monotherapy, and if I have to go lower with levo amd increase T3 over time that's fine. But this is madness surely?
Of course right now I can't take T3 until cortisol is sorted so it's a relief I asked for this test before I took the T3! I'd asked specifically and tbh I don't even think he really looked at my results until I saw him Friday as he said I'm glad you came back, as your cortisol is 'abit low'!
I've since learned that nice guidelines used to say cortisol under 100nmol warrants an automatic addisons dx (mine was 86). Now it says under 150 warrants testing. Knowing how nice have messed around T3 and NDT patients doesn't fill me with much hope for addisons with nice either really! 🥺
And now I'm under his care for adrenals (there's a chance it could be secondary due to steroid inhalers I take for asthma so I'm hoping its that but will still need tx) and may be for some time, I'm not sure what to do for T3 anymore.
Originally I was just going to use roseways prescriber, as well as them compounding it people have said how good they are too. Also I feel the need for guidance atm espcially with adrenals affecting me. Hopefully their prescriber won't lower my levo so much! But not sure if its OK to not follow his thyroid advice while under his adrenals care? What an almighty mess!
I'm not sure if I'm making sense but if I am and you're able to shed any light on the thyroid meds aspect I'd be so grateful if poss please? No worries if not and thanks for reading and all your help so far, I really appreciate it. Did you manage to get any info on roseway? I hope so! I have spoken to them about compounding and they were really helpful and thorough answering all my questions - incase thats useful to you 🌸
Well, as I said, it really isn't possible to work out the equivalence of T4 and T3 because there are so many variables. But, the thing is, everyone's need for T4 when taking T3 is different, and everyone has to find their own ideal level by trial and error. So, don't worry too much about that for the moment. The first thing is to get that test for Addison's to see if you have it, then take it from there. One step at a time, that's the best way to advance.
Yes, thank you, I got a link to Roseway's site, but haven't had a chance to look at it yet. I don't need anything compounded, I'm perfectly happy with Tiromel. But it's finding where to buy it that is the problem.
some people seem to need to drop T4 a little before adding in T3.
When I first added T3 I was on 125mcg T4 but soon became over replaced.
I am better on 100mcg T4 and have upped from 2.5mcg compounded T3 very slowly over months and months and switching from compounded to thybon henning 15mcg T3.
I couldn’t take more than 5mcg compounded without feeling hot and hungry without the benefits.
My advice would be start small, be prepared to take a small dose of T3 morning & midday as you adjust. I still take 10 at 6am and 5 at 2.30-3pm to stave off the afternoon slump.
Thankyou so much, thats so helpful. I'm def happy for levo to be dropped for sure (see my reply to Greygoose above if you'd like to see my numbers, my FT4 is def too high). It's just it was such a huge drop and my endo didnt ask to see my recent bloods or anything. I also asked for him to test me first too which he did but doesnt usually , but I'm still awaiting results.
I've emailed and asked if the endo will consider raising levo a little though. Otherwise if he doesn't I don't want to risk plummeting from that too, all whilst titrating T3 as I'm ill from living in mould and about to
be rehoused.
So I think I may use Roseways prescriber instead. I don't suppose you have any experience with them at all please?
Thats really interesting you didn't get on with compounded, please can I ask what your symptoms were and how they'd compounded it?
I've looked at thybon henning and sadly likely will react to the thiosulfate 5h20. I have a major sulphite allergy and read that sulphites are often used when making this sulphate. I'm not OK with all sulphates either, which are different to sulphites so its extra risky. I did look at Teva lio as the best out if them all, but again that's the only one I'd risk and its still a risk!
It's abit worrying to hear that compounded can cause issues, do you happen to have any other info at all please so I could research abit more? No worries if not!
Thanks for the tips on how to take it too , more than happy to go low and slow, I also have MCAS so a good thing for that! Thanks so much again and sorry for all the questions . I understand if unanswerable
100% recommend Roseway, I’m a big advocate. Best to let them guide on your allergies, it’s their area of expertise and I’m sure they can help. I don’t know why I found their compounded so effective, maybe it’s that thybon is actually less well absorbed 🤷🏽♀️ maybe now I’m more stable on the 100 I could try it again 🤷🏽♀️ although now I’m fairly settled I’d be unwilling to experiment 🤣 plus it’s slightly cheaper now I can split a 20mg tablet into 4. The 2.5 mcg compounded capsules were more money, it was cheaper to get 5mcg and split/pour half into a drop of water which was a faff.
Good luck! And well done finding your own path, it’s brilliant that you are asking for the dose you need and know so much about it. Go you!
Thanks so much, I was going to reply to everything but have just recieved this email from the endo this morning and even more confused by him!It is feeling very chaotic. I emailed him last week to ask for less of a levo drop and also to try T3 instead as a. Worried about cost as I titrate, b. Ingredients are a concern (allergies and mcas) and the reply I got this morning is even more confusing. I'd previously told him I'm on 112 levo. Reply pictured!
In the meantime his letter has gone to GP to reduce levo from 125 to 50 so I now need to ask her if she'll reinstate it as I haven't even begun the trial yet. No idea if she even will as she is awful and it took months of fighting to get my levo increases.
It was all meant to help but I'm feeling even more stressed than I was to be honest, as nothing is making any sense. Thankyou for your reply I appreciate it.
P.s. he also did Full thyroid panel plus D, ferritin and cortisol which i also asked for. He wasnt going to test but I asked for it first. I need to get results from him too, his secretary is off sick for a few weeks with no replacement!
Keep battling, ask his secretary to ask him again for what you want. Remember this is patient/specialist discussion and you get to control your consent. 🤞🌱
Thanks so much I really appreciate it. I've emailed and again asked for T3 and my reasons why. I also asked if my levo will be closer to my 112 if so (but at appt he thought that was like taking 100). So hopefully he'll only lower levo abit and not to 50 again.
His secretary is still off sick so I'm having to email directly with him so don't like to hassle him. Also asked for blood results as both reception nor lab can give them. So he'll be sick of me!
Also told him my palps are worse lately, past week or 2 getting heart or muscle pain too, really hard to tell which. Actually booked GP appt for this afternoon now so they can just check my heart as I'm worried. Cardiology halter isn't until 3rd Oct and I'm not feeling too good. The stress of self advocating is probably not helping! Thanks so much again for your encouraging words and advice I'm really grateful 🌸
Thanks very much! I also asked for my bloods and have had this reply -
"I will prescribe you T3 10 mcg
Do you still have the prescription of ERFA?
I did review your results and will discuss in detail when I see you. I gather I planned to see you in 4 weeks
Email is not the best way."
I'm still concerned as 10mcg seems alot to start on, he didn't say about the amount of levo to stay on and won't tell me my bloods unless I see him! I do have Benenden cover of one last appt so it would be free but ethically this seems sneaky. And if I don't see him I guess I can't ask him to wrote another letter to GP to ask her to reinstate full levo .
Bit confused as to what to do really, maybe see him once more then just go to roseway? am losing my mind as also today council made huge u turn on promised compensation so v foggy! 😬 thanks for all your support and help, I really appreciate it 💕
I would get the T4 where you need it first, then after 6 weeksoin stable dose break the 10mcg into 4 and start with 2.5mcg morning and add another afternoon after a week and then after another week 5 in the morning etc.
You are getting somewhere with this, well done ! 👏🌱
Thanks so much,had 100mcg levo past 2 days as suspect that's my best amount in summer, palps eased a tiny bit. Feel happy to start T3 now though. My cardiology 24hour halter is 2md October so be good to see if T3 has helped palps by then or not.
I still need to get them compounded so i guess its best to ask roseway first? Can you send your prescription from an endo to them? Dont know what endo has prescribed, he's waiting for me to confirm if i still have ERFA prescription (i do) and which date. So I think I will see endo one last time as its free on my Benenden and i wont know my bloods til i see him whixh i sont think is ethical but i cant afford to take more tests.right now!! Then after that will get medichecks tests and consult with roseway presciber instead, i guess you cam do that after starting with an edno? Also it'll be cheaper than paying for endo.
Also it may be a while I guess til I get meds and my endo appt is booked 13th Sept,though he thought it's in 4 weeks which it isn't!
OR there's 11th Oct booked too. Should I see him Sept or Oct date? His appts are like gold dust so no others available so wondering how long to trial t3 before I see him? If I start meds say next week it's only under 2 weeks if I see him in Sept. Or apx 6 if I see him in Oct. So thinking Oct better? Then get blood results and never go back lol.
Going back to your previous message earlier on, that I didn't respond to, thanks so much re dosing advice! I think I'll have to do only twice a day only due to other supps and interactions through day, so probably first thing with levo then mid afternoon or something. Maybe do a few days of 2.5 each time then 5 each time or something?
That's strange about thybon less powerful, so you mean compounded could affect you abit stronger them? Kind of makes sense if no excipients are in them that usually affect absorption? Duly noted so will take it slow!
So sorry for even more questions, just asking incase you could advise on timing and appts that'd be great please! But no worries of not of course, really grateful for your help, thankyou so much 🌸
Thanks very much and sorry for my delayed reply I've been poorly. I have P.A which is flaring, I self inject B12 and also take heme iron (I needed an infusion last year when first starting B12) so do keep on top of it alot amd heme seems to be keeping it optimal, but thankyou so much anyway.
I'm so glad to hear the T3 helped your palpitations, please can I ask what dose you started on and if you take levo with it or anything please? Thanks v much again 😊
I started with 2.5mcg T3 and slowly worked my dose to 5mcg and kept raising it till I reached my current dose 15mcg T3. My Endo kept lowering my T4 to a point that I wasn't function well. I raised my dose to 150mcg T4 with my T3 and I feel Thankfully my Thankfully well . I never understood why Dr's feel that the T4 needs to be reduced when adding T3. In my case I couldn't figure out why I wasn't feeling well even though T3 was added. Once I went back to the dose that I felt well but not well enough only after adding the T3 to my T4 dose. Did I feel the big difference. Some might need a dose reduction but not all. We are all individuals with our own set points.
Thanks so much for your reply . I am actually wondering whether or not to drop levo at all with T3 too? What do you think would be a good dose please with 10mcg? And if I do a week or 2 on 5mcg wwould evo dose need to be different again?
II'm also affected seasonally and find levo 100 to 112 in summer best, 118 spring and autumn best. 125 titration ended March when I got palps bur tthink if in Dec/Jan might have been ok. Anyway I took myself to 118 in March which helped palps abit but Ft4 was still high normal. This summer 118 was too much. I know I'd soon need to get back to 118 levo if not introducing T3 so no idea what to do with levo! It's so complex isn't it?
Endo is also not great and I'm only going back to get my new prescription so I can get it compounded, also get my tests results as he wouldn't let me know them!! And ensure he amends gp letter back to 125 and just say my gp is slow at getting back and as we may need to experiment lots it'll be less tiring and expensive for me to keep levo prescription the same, rather than asking him to amend letters. Not that I wanted him to write to her anyway, it really annoyed me!
So sorry for more questions! I hope it made sense? Thanks again for your help I appreciate it 😊
I'm so sorry for my very late reply, I also have P.A and been flaring badly. Thankyou for answering all my questions!
Since our last message the endo has gone from bad to worse! He told me his temp secretary will book an appt and she got in touch just saying endo is away now until next week (tomorrow now) and will answer my questions then (about prescription, bloods, letter). So who knows what's going on, couldn't make it up eh? Still have this Friday booked anyway so going to just see him to get whats legally mine and never be in touch again!
With the Roseway capsules that are compounded they are 10mcg so I'm not sure how to dose those as not caps you can break. Maybe I can ask if they can supply extra caps then I can empty 2.5mcg doses from each one or something? They don't charge for nunber needed as I asked what happens if I end up needing 20mcg etc, does it double and she said no, so that was a relief!
Also do I then give it 6 weeks once taking 10mcg a day, until my next bloods and roseway appt? I'm guessing 6 if I need the full dose for 6 weeks first?
Thanks so much again for your help, I really appreciate it! 😊
The equivalences you are being told or are quoting look wildly wrong to me.
CANADA’S “THYROID” aka ERFA, formerly by Pfizer and is now by Erfa. Note: beginning around May 2014 and continuing to today, many patients have reported Erfa was now causing a return of hypothyroid symptoms. Erfa denies a change. Click here.
Tablets come in 30, 60 and 125 mg tablets. They contain:
Dried Thyroid
Magnesium Stearate
Cornstarch
Talc
Sugar (tiny amounts of both sucrose and lactose)
Erfa’s Canadian Thyroid has slightly different ratios than the USP ratios of US brands:
30 mg tablet embossed �ECI 30�, has 18 mcg. of T4; 4 mcg. of T3 (as compared to 19/4.5 in US brands) Equivalent to the US one-half grain.
60 mg tablet embossed �ECI 60�, has 35 mcg. of T4 and 8 mcg. of T3 (as compared to 38/9 in US brands) Equivalent to the US one grain.
125 mg tablet embossed �ECI 125�, 73 mcg. of T4; 17 mcg. of T3 (as compared to 76/18 in US brands) Equivalent to the US two grains. erfa-sa.com/thyroid_en.htm, plus they have a question & answer forum: erfa-sa.erfa.net/
There are some strange characters in the text above and my PC won't copy or display them correctly, but you can still work out what is being said.
Thanks so much and sorry as I've actually decided against ERFA now, NDT in general due to cost and the need to compound meds. Looks like this may have been a blessing to avoid! If in a position to take NDT in future I'll make sure it isn't erfa, thanks again
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Hope I haven't missed any of yours? 
Anyone gone from NDT back to Levo & Liothyronine with success?
Anyone supplementing NDT with T3?
Advise on t3 dose please?
Adding T3 to Levo
Can anyone help please? 
