Converting from erfa back to levothyroxine

[woofa27]

Hiya all you helpful peeps!

Had enough of this Erfa malarkey - it just isn't working how I'd hoped.

SO, HOW WOULD YOU GO ABOUT CONVERTING BACK TO LEVO?

[bearing in mind that I came off levo for 15 days at the beginning of lockdown and have had terrible troubles ever since (now getting on for about 3 years ago 😬) So need to try to make it the least stressful on my system as possible]

1. Would you get blood tests done before anything else?

(I have previous bloods from 60E, 30E/30E/30E and 50L/30E in am, 30 E pm - would these be a good enough guide?)

Results on 125L/100L (March'23)

{Low mood and hypo - v short energy span and teary}

TSH - 2.06 (0.27-4.2)

FT3 - 3.8 (3.1 - 6.8)

FT4 - 17.1 (12-22)

CRP 1.2(<3)

Thyroglobuline AB - 614 (0-115)

Thyroid periodase AB - 208 (0-34)

Results on 60E (Sept '23)

{Very low mood and very hypo}

TSH - 10.9 (0.27-4.2)

FT3 - 3.8 (3.1 - 6.8)

FT4 - 12.2 (12-22)

CRP 2.96 (<3)

Thyroglobuline AB - 565 (0-115)

Thyroid periodase AB - 239 (0-34)

Results on 30E/30E/30E (October '23)

{Better mood and brain power, but very achy and crampy}

CRP - 4.7 (<3)

Ferritin - 81.7 (50-150)

Folate - 19.5 (8.83 -60.8)

B12 [Active] - 106 (37.5-188)

Vitamin D - 87 (50-250)

TSH - 3.38 (0.27-4.2)

FT3 - 5 (3.1 - 6.8)

FT4 - 12.2 (12-22)

Thyroglobuline AB - 716 (0-115)

Thyroid periodase AB - 254 (0-34)

Results on 30E+50L at 7am followed by 30E at 4pm (December '23):

{felt brain fogged and paranoid}

TSH 2.72

FT3 4.3

FT4 16.8

2. Would you just do a direct swap from current Erfa dose to levo equivalent

3. If directly swapping, which equivalents would you go by?

4. Would you go to one dose a day, to try and get the TSH to convert as much to T3 as possible or still split into two as I have been doing for Erfa.

(Eventually I was hoping to experiment with a dose of around 150 Levo, split into two doses am and probably bedtime {prior to going cold turkey, this was the dose that I tended to feel 'best' on})

Currently on a total of 90 Erfa, on Endo's advice

(for about 4 weeks, 2 of which were me trying to take in one hit)

(Endo seems determined to keep me at too low a dose to fuction and I've had enough! To be fair, he was suggesting a different protocol of 90 Erfa all in one hit, but find I just can't seem to tolerate such a big hit of t3 all at once)

I can mostly stay awake better due to a higher t3 than on t4, but get terrible cramps in feet and hands in between doses and look like a huge pale icy puffed up doughball (truly a vision of great beauty to behold!)

Also, my crp has gone up, tsh has gone up and t4 significantly down since joining forces with this endo, although to be fair to him, my t3 has gone up. But the bumpy ride I used to have on levo, is just there in a different format on Erfa and it's so difficult when your drugs pusher is only willing to prescribe a teaser dose...

I have enough levo to be able to have a reasonable run of weeks, after getting back on a more sensible dose for a big fat blooby bumbling bird like myself!!!

Going by my current size, which is even more colossal since getting the 'experts' involved, a theoretical full dose of levothyroxine would be between 125 and 164 per day -I do realise this is just theorectical, but this is the sort of range I've been on for the majority of the last 35 years.

Please note, I haven't ignored previous advice about dessicated thyroid protocols, but have found it just too tricky to tweak, especially in light of the fact that my prescriber is very unwilling to up my dose

Thanks in advance and also (in my usual tardy way):

HAPPY NEW YEAR TO ALL!

😃

[Jaydee1507 Administrator]

It looks to me like you have never got to a point of optimal replacement. Someone on NDT or anything containing T3 would have a below range or suppressed TSH.

Do you think it would make all the difference to be able to take a little more NDT? If so then you need to find a new prescriber.

Your conversion doesn't look great and its possible that even with an increased dose of Levo you wouldn't convert enough so then you might want to add in some T3 but you would need the right prescriber that would enable you to do that.

Vitamins look great so well done with that.

[woofa27 in reply to Jaydee1507]

Thanks Jaydee1507, I'm still not sure if it suits me though, as my crp levels and antibodies have gone up and I just find the gaps between doses is way too long. It's as though there's too much T3 in my 60Erfa hit and yet at the same time not enough hormones to last me through. Hence why we tried adding in the t4, but when I did that I still had the same issues between the doses and was absolutely desperate for my second dose to come around. It's been one hell of a rocky ride on all thyroid meds tried to date. But I hear where you're coming from.

I'm just not sure ndt is for me, my plan was really to get back on t4 and then add in a bit of t3 in more regular hits, but without having to keep shoving in more t4 alongside the t3.

I don't really want to give up on t3, but I just don't think ndt is flexible enough for my requirements.

[Jaydee1507 Administrator in reply to woofa27]

If you are under replaced and taking T3 it can certainly feel like the T3 is 'too much'. That feeling tends to vanish once you get more optimally replaced.

For sure dose changes are a lot more complicated and restricted on NDT and a combo of Levo+T3 much more flexible.

Of course you would still need a prescriber/Endo who was willing to give you enough to achieve optimal levels...

[woofa27 in reply to Jaydee1507]

Yeah, you always need a blinking prescriber! 🙄

And, in my case, my endo is very keen to keep my levels as low as possible and the notion of optimal never seems to cross his mind.

Sometimes wonder if the plan is to keep me below optimal, so I keep having to go back for more advice, whilst he rakes it in…

Did you have any notion of a protocol for going back on levo and do you think I'd need to do a blood test first?

[Jaydee1507 Administrator in reply to woofa27]

Unfortunately there is no dose equivalent for NDT/Levo or any other combination.

Back in March you were under replaced on 100/125mcgs Levo so you could go to 125mcgs Levo. It will be a shock to your system for the first few weeks as the T3 is immediately acting and you will be missing that for 2 weeks until the extra Levo kicks in. Expect a few rough weeks.

Make sure you have enough Levo to do this and won't run out.

A blood test now won't serve any purpose as you will be on a different treatment and theres no way of working out the equivalence.

[woofa27 in reply to Jaydee1507]

Thanks Jaydee1507.

It will be a shock to your system for the first few weeks

Don't much like the sound of that, but seems to be the way of the thyroid world. On the plus side I guess not needing to do another blood test is going to save a wee bit of dosh!!! 😀

[Jaydee1507 Administrator in reply to woofa27]

Forewarned is fore armed. I have done this myself so I am speaking from experience.

[woofa27 in reply to Jaydee1507]

Hope you're feeling better nowadays. I'm going to go check out your profile, thanks again Jaydee1507

[jamesal0]

Hi Woof. Sorry you are having a rough time. As you say it's very hard when your pusher is being difficult. I have about 9 month of NDT in the fridge and just take what I need each day. The heavier you are and the more thyroid resistant you are the more you need. Not to mention if you have had a full thyroidectomy or just early stage Hashimoto's. My needs change winter vs summer - slack day vs sporty day. I swing from 2Grains (120mg) to 2.5 Grains. But there are Admins on this site that take 3.5 grains. Also I think you are over thinking all the TSH, T4 T3 tests stuff - you just take more NDT till you feel better. It takes about 12 -18 months till you work out what works and doesn't work for you. If it was me I'd buy extra NDT online to supplement the GP's measly doses

J

[woofa27 in reply to jamesal0]

Hiya jamesa10, thanks for your reply, how many doses a day do you take and do you take it sublingally? And at what times?

A big part of my problem is tha gaps between doses seem so immense that you can literally see me getting more hypo, but the morning hit feels too much.

[jamesal0 in reply to woofa27]

I take it for breakfast and dinner mostly (yes I take NDT and Levo with food- makes no difference so long as you take enough) But if it' 3pm and I'm feeling sleepy I'll take 30mg. I use symptoms and anticipation to drive daily dosage. Feeling buggered take more, Insomnia take less or move it earlier in the day, wake up at 2am and cant get back to sleep take 30mg, if my spine hurts in bed take more, if my ear canals ache take more, if I'm seeing a white myst in my peripheral vision after exercise take more, know I've got a tough day at work take more etc. I swallow it whole with a glass of water, often it's just the powder because I've spit a 60mg cap (tastes meaty) . When I take 60mg particularly in the morning I feel wacky / sleepy for 30-60min but you know it will pass. My hands and feet are tingling a little at the moment, I just took 60 before dinner. Re Anticipation - If you take it at the right time - just prior to athletic endeavour its a cheat, it dilates your blood vessels and you can smash out a swimming pool training session. If you really push NDT hard, well into the suppressed TSH space you will dump weight, I sort of hover just under that. I also take Testosterone on a script, similar approach - but need to be very careful with that stuff, easy to get roid rage over something stupid like getting cut off in the car park. But think about HRT if it's that time . Your hormones and thyroid systems work hand in hand.

[woofa27 in reply to jamesal0]

Been having technical difficulties, both me and my computer!!! So have only just read this reply. Thanks for all the details, sounds like you really know your body and what it needs, must admit that it seems more logical to dose - intuitively. That is, if your brain works well enough to do that! And of course, if you can find a reliable source of sufficient NDT.

You say yes I take NDT and Levo with food- makes no difference so long as you take enough - does that mean you're taking levo at the mo too?

[woofa27 in reply to jamesal0]

Hey 👋 Jamesa, always very unsure about buying stuff online, how do you know the source is reliable?

[jamesal0 in reply to woofa27]

there are plenty of people on this site that can advise where to buy thyroid online in the UK. I can send you some links privately , but I'm in Australia so may not be optimal for UK. The are also brand names that have been around for years Armour Thyroid, NP Thyroid, Nature-Throid. Not cheep but a nice cup of coffee's not cheep any more either, which is about how much per day it will cost you.

[helvella Administrator Thyroid UK in reply to jamesal0]

Nature-Throid has not been available in a long time - and no-one is sure it will ever again be available.

[pennyannie]

Hey there again :

I'm sorry you were unable to continue to build up your dose of NDT to a reasonable level as suggested in my previous reply to you some 6 months ago.

If you have Hashimoto's this can throw a spanner in the works for some as you are liable to erratic thyroid hormone production as the gland becomes disabled and for some introducing NDT ( pig thyroid ) seems to trigger their immune system further and increase antibody levels.

I'm not sure there is a mathematical equation that works regarding switching options and dose values - like most things with thyroid it's more about trial and error and so individual as we need to learn to read our bodies and why we need to take back some control ourselves.

So 1 grain Efra contains 8 mcg T3 + 35 mcg T4 -

and read 1 grain NDT equates to around 75/100 mcg T4 -

How are your core strength vitamins and minerals - I know I need a ferritin at around 100 - folate around 20 - active B12 75++ ( serum B12 500++ ) and vitamin D at around 100 ;

[woofa27 in reply to pennyannie]

Thanks so much pennyannie, I really wish my endo had a more open approach and I totally listened to what you said in that post, but have had trouble with getting endo to increase my prescription.

The symptoms of all these thyroid hormone level variations are insane.

I also feel Levo + t3 might be better for me - easier to fine tune.

… and maybe it’s time to dump my endo.

Ironically, my hypo symptoms have gone seriously downhill since getting involved with this endo. Though, I do think part of the issue is that my body has still not forgiven me for going cold turkey.

Core strength vitamins pretty good as per October blood test:

Results on 30E/30E/30E (Oct '23)

{Better mood and brain power, but very achy and crampy}

CRP - 4.7 (<3)

Ferritin - 81.7 (50-150)

Folate - 19.5 (8.83 -60.8)

B12 [Active] - 106 (37.5-188)

Vitamin D - 87 (50-250)

TSH - 3.38 (0.27-4.2)

FT3 - 5 (3.1 - 6.8)

FT4 - 12.2 (12-22)

Anyways, I think it’s back to the drawing board for me. Thanks to all for ur support.

[pennyannie in reply to woofa27]

So the above result is from October and you were taking 3 x 30 mcg Efra -

so was this split 3 times a day - and how long had you been on this dose ?

Your inflammation is high - this in itself can down regulate thyroid hormone conversion and cause symptoms - are you dealing with any ' other ' health issues ?

Have your antibodies risen since moving to NDT?

The TSH once on any form of thyroid hormone replacement should be kept under 2 - and in reality likely under 1 and towards the bottom of the range - especially when taking any form of T3.

[woofa27 in reply to pennyannie]

I suppose the menopause might be considered 'another' health issue, and PCOS.

I'd been on the30E/30E/30E (7am/12pm/4pm) dose for 8 weeks. I found I felt more positive and had more energy, but body temp was tending to be low, mostly below 36. Fingers would be shaky but cold and I'd get all sorts of strange digestive issues, everything was all over the place symptoms wise, kind of hyper and hypo all at once. Aches were particularly noticeable overnight and I have gained a good chunk of weight since Erfa began. It's kind of like being hypo, but with an overlay of hyper.

I went to the endo saying I felt I needed to add another dose to get me through the night and he took my pulse (it was an am appointment after having walked there and gone up quite a few flights of stairs) and he said my t3 levels were too high and proceeded to put me on the 50l/30E am 30E 4pm regime.

I was expecting a slight raise for the erfa, but he thought the t4 was what i needed, so I went off and tried what he said - I'm a bit too inclined to think that, because I'm paying him so much money, I should do as he says.

The TSH once on any form of thyroid hormone replacement should be kept under 2 - and in reality likely under 1 and towards the bottom of the range - especially when taking any form of T3.

Yeah, that's what I thought, but, apart from when my tsh was over 10, he's been really chuffed with 'his' lab work. When I was still complaining of hypo symptoms, before I got the TSH of over 10, he was saying it was probably the menopause!! I knew I felt more hypo, you only needed to look at my pale, sad puffy ole face.

Your inflammation is high - this in itself can down regulate thyroid hormone conversion and cause symptoms - are you dealing with any ' other ' health issues ?

Have your antibodies risen since moving to NDT?

My inflammation and antibodies have both gone up on NDT. I think before NDT my CRP was 1.2 and latest bloods that included CRP it was 4.47 (range <3). I pointed this out to him and he 'tished' it away.

[pennyannie in reply to woofa27]

Ok - so you have raised antibodies and inflammation since starting NDT -

and we also have going on menopause and PCOS. - so it could be something else - I don't know enough - though read if taking HRT - some forum members need to increase their thyroid hormone replacement to compensate - depending on use - creams being preferable :

Apart from not being optimally medicated I tend to think you may do better on synthetic T3 and T4 thyroid hormones and I would seek out some one else as this endo does not instil much confidence.

I self medicate my NDT and DI for Myself -

but I don't have Hashimoto's which in itself causes erratic own thyroid hormone production as I had RAI thyroid ablation for Graves Disease back in 2005 and deeply regret this - but there you go - we all have to live and learn.

Not sure if you have this link already but many follow and respect the research and suggestions of Dr Izabella Wentz - thyroidpharmacist.com

[woofa27 in reply to pennyannie]

Yeah, I agree with all you say and feel synthetics are my next step.

I've never had Graves, always been at the other end of the thyroid world, but have to say that the old RAI thyroid ablation seems pretty barbaric - I'm so sorry to hear that you regret it.

I can never quite understand why in the 21st century, thyroid care is such a 'stab in the dark'/'hope for the best' process. I'd like to to be able to say: "but hey ho, it is what it is...", but really the whole thing makes me really really angry.

I'm so glad that NDT is working for you - nicely played.

All the best in your journey and thank you for all your input past and present.

[pennyannie in reply to woofa27]

Well apart from the choice of thyroid hormone treatment options being reduced on the NHS from all 3 - some 20 odd years ago - to 1 - just the cheapest Levothyroxine -

everyone's ' set point ' where they feel well is unique to them and why in reality the patient knows best.

Mainstream medical works to ranges and guidelines - and a computer programmed with guidelines that are not fit for purpose -

It's also apparent that doctors in primary care can't even order the best appropriate blood tests - should there even be any critical thinking going on -

It seems very much a numbers game rather than patient centred and probably why many experienced long standing doctors have left the profession.

[woofa27]

Beautifully put, pennyannie! 🤣