I would be grateful if people who have done this, can let me know if it is OK to switch to T3 and take the same amount in mg as did with the NDT. I am changing back to Levothyroxine and starting T3 and want to keep my levels as they were when I felt best whilst on the NDT. I am changing because I've had a bad reaction to 2 batches of the NDT, and after a lot of medical investigation, it can only be that. I've ordered the T3, which should arrive mid week, and I am starting the Levo tomorrow. Thanks!
Advice Please On Switching From NDT To Levo & ... - Thyroid UK
Advice Please On Switching From NDT To Levo & T3 Immediately.
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This is tricky cos you’d think it would be a direct swap wouldn’t you?
But the molecules of T4 and T3 in NDT are differently “bound” when they’re contained within desiccated thyroid compared to the structure of synthetic T3 and T4.
So you may find the effect weaker or stronger and you probably aren’t going to know until you try!
Which NDT are you currently taking and how many grains? Some may have advice about how they found it when they swapped over. It’ll be anecdotal cos we’re not all the same but it might give you a steer…
in reply to Jazzw
Thanks. I was on Thyroid S, and was for ages, but haven't been feeling up to par over the last two batches, and on taking my last one for 3 weeks, I've had a major pressure headache for 2 weeks, to the point I had to reduce and stop completely. I've had 50mg of levothyroxine today, but was prescribed 100mg as I was 3 grains for quite a while. I feel really bloaty after couple of hours after taking the levo, I hope it's going to suit me.
Jazzw in reply to
Poor you, it’s horrible isn’t it?
So 3 grains would be roughly (very roughly) equivalent to 115mcg T4 and 25mcg T3 (I’ve rounded up and down a bit).
I know that 100mcg levothyroxine and 20mcg T3 works well for a lot of people and that might be something to aim for in the first instance.
But as you haven’t taken as much in recent weeks you might want to ease your way up to that.
As someone who was on 3 grains previously you may well be ok going straight in at 100mcg levothyroxine—it’s the T3 I’d go more slowly with. The levothyroxine will take a few weeks to build up anyway—it’ll be at least 4 weeks before you get the full “hit” of the levo, due to its half life.
But as someone who’s used to having T3 as part of NDT you will definitely be missing it by now!
How about something like 100mcg and 5-10mcg T3 to start with?
in reply to Jazzw
That's helpful, thank you. I hope I'm not having a reaction to even the small amount of levo today, I feel extremely bloated, I can't see on the literature that it contains gluten , which I am intolerant. I hope it doesn't make me gain weight, as with NDT, I could keep a slim weight.
Jazzw in reply to
Which brand of levo have you got?
There aren’t many with gluten in but I know I’ve reacted in the past to ones with acacia powder.
Then again, it could be a complete coincidence. You’re going to be very under medicated at this point thanks to that last batch of dodgy NDT, so I think it’s going to be hard to know what’s causing what symptom for a few weeks—probably best to try not to jump to conclusions and try to keep things as stable as you can (if you can—I know it’s easier said than done).
in reply to Jazzw
Thanks Jazzw. It is Accord Levo, with mainly maize starch ingredients and magnesium stearate. I don't normally have an issue with these.
Jazzw in reply to
Here’s hoping it’ll be ok for you then, once you’ve got back to a decent dosage and your body’s used to it again. 🤞
in reply to Jazzw
Thanks 👍, appreciate your help.
in reply to Jazzw
Sorry Jazz to bother you again. After taking the levo yesterday, I am increasingly having burning and itching all over my body as well as a weird feeling in my system. Do you think I could be having an allergic reaction to it?
ThyroidThora in reply to
Hi, have you thought about trying a different NDT? Alternatively, lower the dose from 3 grains, you maybe taking too much. I’ve tried different NDT’s and I found Armour was the best for me. Good luck, TTxx.
in reply to ThyroidThora
H ThyroidThora. I definitely would try other brands, but I can't get a prescription for the others, and I can't afford Armour and ERFA outright. I'm stuck. I have had levo for two days and I am getting a terrible burning itchy feeling in my system as well as bloating, which I didn't have with NDT, the last batch of NDT caused an all over constant pressure headache The levo brand is supposed to be the most tolerated one, so I don't know. I am wondering whether T3 alone could be the answer, but that is a big step not having T4.
carolinegodlonton in reply to
Hi MapleMoose. I could have written your story myself. I'm in exactly the same situation with the Thyroid-S. I've just started a new bottle hand have realised I've been getting hypo symptoms back quite rapidly. I take 2 2 grains plus 20mcg T3. I increased to 2 1/2 grains a few weeks ago with no improvement. I'm thinking of doing the same s you and going back to levo plus T3. My T4 and T3 blood result were lower than they used to be so this makes sense. If we increased the NDT gradually perhaps we could get to the right amount.? I self medicate so have to buy in both my meds.
in reply to carolinegodlonton
Hiya. Yes, I'm having terrible issues which never used to be the case. My results are showing fine, but I've had a severe pressure head for 2 weeks to the point I thought I was having a stroke and ended up having tests in hospital. It all happened a week after I started the new batch. I haven't had the test results back yet and the head pressure has subsided to a dull a ache now, I have been off the thyroid s fully for 2 days but reduced it to next to nothing during the 2 weeks of substantial pain. The docs at the hospital think it could be the ndt. I have ordered T3 and have started on the Levothyroxine (reluctantly). I am feeling very strange since having it with burning and itching all over, plus bloating... I had bloating when I took it years ago when I was initially diagnosed, hence why I switched to ndt. Unfortunately, I can't afford the American and Canadian brands, otherwise I would try them. I have to self medicate as my area only prescribes Levothyroxine. I am finding all these issues quite depressing as I was fine on thyroid s for several years. I am wondering whether T3 alone might be better. I hope you do better on the Levo than I do. I stuck with the Thyroid S for as long as I could. I don't know what the changes can be, unless they are not using healthy pig thyroid extract because the manufacturer claims there are no filler and binder changes.
When someone says a product is the most tolerated, that is across lots of people. (If indeed it is even true!)
Are you able to make it to your pharmacy and ask for a replacement due to side effects/adverse drug reaction?
Regardless that, please put in a Yellow Card report on it.
in reply to helvella
They only stock Accord Levo.
Ask very sweetly for them to put it in writing that they are REFUSING to help a patient who is suffering these issues.
If you have a mobile phone, put it on record in your pocket.
It is unethical , immoral and, I am pretty sure, against their NHS contract to fail to do anything at all.
in reply to helvella
Yes, it's all a battle where I live to discuss and deal with thyroid disease. They think Levothyroxine fixes everything, and ongoing symptoms are just part and parcel of the condition 😔😡
ThyroidThora in reply to
Private message me please.
jamesal0 in reply to
Hi MapleMoose - it sounds like you were overcooking on a slightly stronger batch of NDT. I'd just drop 30-60mg from your daily dose. Also have a couple of days off and let your titration drop off a little before restarting on the daily. You could also split dose take 2 grains in the morning and see how you feel around 3pm, then take 3rd grain if you need it - ie feeling sleepy, feeling cold etc.
in reply to jamesal0
Thanks jamesa10, but I have already reduced it before to 1 grain and had no let up from the pressure. It was only until I stopped completely, it eventually started to subside. It's all very strange, and could be a dodgy badge or my system just can't take that brand of ndt anymore.
jamesal0 in reply to
I'm been where you are - I think it happens after a long period (like years) of over doing NDT. The way out is - When you go off NDT, after a few days you should feel yourself going low thyroid - like starting to get cold, heart beat slowing. It might take a week. You carry 5-7 days of T4 in your body tissue. Then slowly come back on it (like you are trying NDT for a first time). Start with 30mg per day and slowly slowly optimise up using side effect to guide you.
in reply to jamesal0
Thank you jamesa10. I didn't realise I was so nieve about this treatment malarkey, I just thought once a treatment is working for you, you stick with that and just tweek. The only hypo I am feeling is a bloating around my middle, I am desperate not to gain weight due to this crash, the ndt 'was' great for that. I was thinking that this type of ndt is no longer potent or the formulation has changed. Several folk have reported issues with this ndt of late, unfortunately, it's only this type of ndt that I can afford. I need something to work asap as I'm now very sleep deprived due to the headaches I am getting, which are definitely thyroid related, confirmed by comprehensive testing. The wacky thing is, my blood results don't show a major drop.
Hello,
I am in the exact same situation as you. I’ve been on NP Thyroid since leaving the US but cannot optain an NDT here in Portugal. So I’ve been working with a good doc out of Lisbon to switch to T-4 and T-3 synthetic.
As I was on 3 grains NDT, we will bring the dosage up slowly, then get blood work in 6-8 weeks.
Good luck with your switch
in reply to Aardvark00
All the best with your change over !!
with regards to Accord Levo, it caused me headache, stomachache, bloating and constipation 24/7. I tried Mercury Pharma but that gave me a constant headache. The only brand I can tolerate is Wockhardt. You need to contact your surgery and ask for a new paper prescription, then ring every Pharmacy in the area to see what they have in stock and go from there. I know it’s a hassle but needs must.
in reply to Gingernut44
Thank you, does Wockhardt contain gluten and also are you based in the UK so it's available on the NHS?
The added ingredients are lactose, sucrose (fine powder), maize starch and magnesium stearate. They are manufactured in Wrexham, Wales. They only come in 25 mcg but are very small and I have no problem taking them all at once (I’m on 100 mcg and I “hoover” them up from the palm of my hand and swallow with a glass full of water). My GP has kindly stipulated this brand on my prescription. It’s certainly worth trying all brands available until you find one you can tolerate.
in reply to Gingernut44
Thanks, appreciate the info
in reply to Gingernut44
Hi Gingernut44.
Absolute nightmare trying to get this Wockhardt levo. My local pharmacy actually stocks it, but without the gp specifying that brand, they won't give it to me. The gp won't specify the brand on the prescription because they say the pharmacy will over charge the NHS for specifying a particular brand, but did put on the prescription that Accord is to be avoided. The pharmacy now still won't give me Lockhardt because it only comes in 25mg tablets and when I said to just give me the equivalent of 100mg they said they can't do that unless the gp states specifically that is to be done. I can't believe what I am hearing. Absolute muppet show, and so now I can't tell if levo will work for me at all until I find something that doesn't give me a reaction. This idiocy is why I turned to NDT in the first place, but that's no longer an option for me.
Gingernut44 in reply to
What an absolute nightmare but not unusual. Yes, it costs them more because you are having four boxes per month as opposed to one but I think my GP got fed up with me complaining he was happy to prescribe Wockhardt for me to shut me up. You need to ask your surgery for a new prescription stating ie: for 100 mcg - take four per day. I have a prescription for two months at a time as I've had problems in the past and one Pharmacy tried to dispense Teva 25 mcg to take four per day. If I wasn't taking Wockhardt, I would not be taking four x 25 mcg per day but would take 1 x 100 mcg which is something most Pharmacies can't get their head around ! I honestly don't think they realise that Wockhardt only make 25 mcg tablets.
My prescriptions states: " Levothyroxine sodium 25 mcg tablets, 224 tablets. Take 4 per day. (Wockhardt brand please) "
If my Surgery can do it, so can yours. start being the squeaky wheel.
in reply to Gingernut44
Thanks Gingernutt44. It's like climbing Everest try to sort things out. I complained to another doctor and they told me to explain it to the surgery's pharmacist, so waiting on that call. They said branding on a prescription is wheeling and dealing in effect. What a load if rubbish. It took all my might not to give him one verbally so to speak. I told him my patience is wavering 😅
Gingernut44 in reply to
What an absolute load of tosh, I’ve never heard that rubbish before. Keep squeaking 🤬
in reply to Gingernut44
I think it's a case of bellowing from the rooftops 😂😂
Gingernut44 in reply to
Have you had any luck with your prescription yet ? I’ve just been reading a thread from 2 days ago from revitalise and helvella’s replies regarding the correct way for your GP to write a prescription - it’s regarding Teva but it refers to your situation and the stupid comment from your doctor.
in reply to Gingernut44
No I haven't yet Gingernut44. The gp in effect agreed in principle but said the surgery's pharmacist has to sign it off, he can't, and apparently, they are not available until tomorrow morning 😡. I now becoming the pain in the neck patient I'm sure, over just some piddly little tablets which I'm sure won't break the NHS budget, it's not like I am requesting some new ground breaking treatment 🙄. I have had to delay going away with my family until it's sorted, it's a good job, there isn't a booked flight involved. Anyway, can I ask whether this t4 has helped and not caused weight gain. This is the reason why I came off Levothyroxine years ago, and the ndt stopped all that, until I crashed two weeks ago on it. Do you take t3 as well? I am desperate not to get back to the issues I had with Levo when I was originally on it.
Gingernut44 in reply to
No, Wockhardt didn’t stop me putting on weight, it just stopped the awful side effects of the others. The reason I put on so much weight is totally down to my useless GP thinking he knew it all and basically buggered me up completely. It’s a very long story and I must update my profile. Bottom line - I am now seeing an Endo privately and am taking Levo with added T3 which is compounded for me with only maize starch as a filler. It’s the excipients in branded T3 that cause me problems. I also couldn’t get on with NDT.
in reply to Gingernut44
Thank you. Everybody's story is complex for sure.
it would useful for others to comment on to see your last few labs with ranges included
in reply to Noelnoel
On the NDT before I cut it out, my T4 was mid normal range, my FT3 was slightly above range with a suppressed TSH due to the T3. I have had these ranges on most batches of NDT, and felt OK, so it's strange why I've had an intense headache with a a thickening in my throat after taking the latest batch. Other folk have commented on issues with this NDT in recent times too.
Noelnoel in reply to
“On the NDT before I cut it out, my T4 was mid normal range, my FT3 was slightly above range with a suppressed TSH due to the T3”
Apologies if this has already been said but have you considered, that given your T3 is now over range, you might be slightly overmedicated?
And are you saying whilst on your last batch of NDT Ft4 mid range, Ft3 over range?
in reply to Noelnoel
Yes Noelnoel, they were just slightly over be 2° (6.4, and norm range was 6). When I cutback on the dosage 3 down to 1, it didn't make any difference on how I felt. It was only after stopping it over 2 days that my major headache went. Why did you stop ndt, and what do you take now? I am still waiting on synthetic t4 and t3, it's taking time to arrive, so everything is up in the air trying to get back to feeling well again.
I posted regarding the same issue last week. I had been on Thyroid s for over seven years.
I was on 2.25 grains i.e. 88mcg of T4 and 20 mcg of T3. I tried to change taking 75 mcg Levo
and 6.25 mcg of T3 morning and then 6.25 mcg of T3 in the afternoon, Soon after taking the first dose at 6.30am I felt ill, bad stomach and I spent the whole day sitting on the Loo.
I was only on Levo for 6 months or so after my thyroidectomy and became very ill then. I am not allergic to anything and never have stomach pains.
I am now back on my last few old thyroid s pills. I don't know how to help you, sorry. I cut my T3 pills into quarters. Perhaps it should have been eights but I don't know how? I am now going to try some Armour which I bought during covid.
I think these now have to be chewed first before swallowing.
My Levo is made in France by Merck. It made me ill seven years ago and again now. I am not allergic to anything. I don't know what's going on but I have made a written complaint to
the manufacturers of Thyroid s and they are looking into it.
in reply to Brightness14
Brightness14, thanks for contacting the manufacturer, I hope they take it seriously, I sent them an email a year ago, but no answer, fortunately, I bought it from a supplier and she very kindly refunded the money so I could buy another batch which was better, but this seems faulty again. I am waiting on blood results to see if my head issues are anything else, in some ways, I am hoping so, wishful thinking it's not the Thyroid-S. I have had the levo today, and feel like I'm a balloon bring inflated and the pressure in my head is slightly returning, plus tingling burning particularly on my face. I do have an introduction dose bottle of NP Thyroid but I can't see the date and I bought it years ago, plus I can't afford to buy that long term. If I can't get on with the thyroid s, I may have to try T3 alone, but I'd prefer NDT.
I can’t comment as to the advisability of doing so, but I did this (an almost straight swap, but with a tiny bit extra T3 as I couldn’t cut the tablet to the extent that was required to match my NDT dose). Doing so caused me no problems at all, though I may not be very sensitive to T3 as I never could feel a difference after taking my NDT dose and I know many people can.
in reply to Thalia56
Thank Thalia56, if it comes to it, I will need to take the plunge and try t3 alone. Do you split your dose throughout the day, and what do your t4 levels say on blood tests. My gp will flip out when they know I'm trying that route
Thalia56 in reply to
I take my Levo and two-thirds of my T3 dose at 6am, go back to sleep for a while, then take the other third of my T3 at midday. I started the 6am thing to help my low cortisol levels. They’ve improved, but I still stick with it as it means the Levo is on an empty stomach and I don’t have to wait before eating breakfast when I get up.
When I was on a higher dose of T3 I split half and half. The third and two-thirds dosing is simply because that’s the easiest way to split the tablet (I currently take 15mcg and have 20mcg tablets).
My last blood tests showed my FT3 was pretty high in range and my FT4 low in range. Because of this, I’m currently trialling a reduced T3 dose (from 20 to 15mcg) to see if that helps my FT4. My TSH is very suppressed; I know it will be suppressed as a matter of course on T3, but it concerns me slightly, which also fed into my decision to reduce T3 and see what happens. For the record, I don’t feel any difference three weeks in to the changed dose - I think I’m just not very sensitive to thyroid hormones!
I know what you mean about the GP. I had a phone appointment with a locum from my practice recently about another matter and had sent through my private blood tests (I’m still shielding from Covid, so don’t want to go to the surgery). I don’t understand how she couldn’t tell from my results that either I was on T3 or that something strange was going on, but all she did was focus on my TSH. I still haven’t decided whether or not to tell my GP - obviously if a situation happens where it may be relevant, I will. I think if I do so, I’ll focus on data and the improvement in heart rate, BP and temperature, but I’m worried I might get kicked off their books and they’re the only surgery in town.
I hope this turns out to be a helpful route for you. Btw, I like the username; a Canadian connection, perchance? 😀
in reply to Thalia56
Thank you. Yes, I hate trying to treat myself. The gp has referred me to the local endo, but they're against anything other than levo, so I can't see the point going. I'm going to see if there is another levo brand I can try with the t3 I've ordered. If not it's either t3 or go back to the ndt. Re my username, I'm not Canadian, but I do Iove the country, maybe it would be easier to get thyroid help there 🤔😅🤣
I haven't had a refund yet although I have complained to the supplier who I have been using for seven years. I also ordered another batch from another supplier.
The manufacturer has also emailed me and are looking into my complaint.
I don't know if I used to much T3 6.25mcg or it's the Levo that made me ill . I thought that because the Thyroid s had 20 mcg T3 in it I would have been safe. I was on the new batch for forty days before I realised it wasn't working. I thought it was my ear tumour. I was falling down and couldn't leave the house.
AT 76 years old I could do without this and so could you. If the Armour doesn't work either
I will go back to trying just the Levo in the morning again, and then gradually introduce some
T3. I get these both free of charge from my GP here . Please let us know how you get on.
in reply to Brightness14
Will do Brightness14. It's an uphill struggle with this thyroid malarkey. Best of luck!!
in reply to Brightness14
How you getting Brightness14. Is the Armour working for you? I was allergic to the brand of Levo they gave me, I am due to start a new type if the gp agrees. The Tiromel t3 has arrived. I took just one grain of Thyroid S this morning. I still feel bloaty but the headache hasn't kicked in fully like last time I took it. I will try taking some Tiromel t3 this afternoon and see how I feel.
I just did this, and the details are in my bio. I estimated the amount of T4 and T3 in the bovine NDT that I was taking based on several research papers of analysis. Then I did an approximation of amount of T4 to the closest Synthroid dose and T3 to the closes Cytomel dose. Then I deliberately started 5 mcg *less* Cytomel to provide some degree of being prudent, on my starting dose. It wasn't quite a perfect match (partly because it had theoretically less T3 and because these were estimates. I am 6 weeks on the new meds this week and doing about 80% as well. I will be getting new blood work Monday and then, depending on the results, may increase the Cytomel by 5 mcg. It's not a perfect conversion, but my MD agreed it was the most prudent approach to start a little lower on T3 as I am an older adult. Hope this helps!
in reply to Joyya
Thank you Joyya that seems simple enough, although I have been tweeking the dosage for a little while to see if I felt better, but I will go on what I was taking for quite a while previously and just cut the T3 back slightly.
Joyya in reply to
I'm glad it's helpful. I knew I needed more starting, but this seemed to me to be the most prudent way to start. That said, l'm looking forward to increasing my T3 after the blood tests.
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