What combo of meds ??

[dizzy1979]

Hi all, I am just wondering what combination of meds everyone takes, and why? For years I took just Levo which left me feeling rubbish, then switched to thioryd which I loved and then thyroid s, which worked well for 6 months and then not so well for the next 6 months ( batch change perhaps) I have just switched to Levo with self sourced t3, and it is very early days, but I feel rubbish, I just don’t think Levo agrees with me. I follow several fb groups and see that people take all sorts of combos like Levo and ndt or ndt and t3, etc and wondered what people found worked best for them. I am

Not convinced I will stick with Levo and t3, I will have my bloods done in a few weeks but I felt so much better on thyroid s then I currently do, but not optimal.

I’d love to hear everyone else’s thoughts on combination meds etc.

[SeasideSusie Remembering]

dizzy1979

When I tried NDT way back in 2000 it didn't suit me. I now take a combination of Levo and T3 and the ratio of T4 to T3 I currently take is 8:1 which I know is very different from what some members take. I don't think it will help you in any way knowing what combination others take, it's a very individual thing which we have to experiment with doses and tweak to our own needs.

It might be a good idea to post your new blood results when you have them, also some previous ones where you felt well. Also make sure that you have optimal nutrient levels too, maybe get a full thyroid/vitamin panel.

[dizzy1979 in reply to SeasideSusie]

Thanks seaside susie, I amA few weeks off retesting, I just feel

So unwell at the mo, it’s depressing. I know that it’s early days, but when working at home and alone all day it feels like forever until I can change my dose etc. I really want this to work so that it takes the stress of sourcing ndt. I had such high hopes for a miracle over night. I’m worn out, still not sleeping through, and generally ratty most of the time because I’m so tired. I feel like I have gained a stone ( to scared to actually check ) since starting 3 weeks ago.

[SeasideSusie Remembering in reply to dizzy1979]

I know, the wait between dose change and testing can seem interminable. We tend to say wait 6-8 weeks and I'm always impatient but I know from experience that my levels can take longer to stabilise. I waited 7 weeks last time and the results weren't what I was really hoping for, but I have held off changing anything because I know that it might take a few weeks longer for everything to settle down, so I'm going to do another test in a few weeks which will be approx 3 months from change, it will be interesting to see if the levels have changed. It's a pity they can't bottle patience, I'd be first in the queue for it 🤣

As you're taking T3, I'm wondering if it's one of the batches of Tiromel which a few people have said seems to be ineffective. Have a look at the batch number om the end of the box or on the blister pack, is it 20E477 or 478 or 479?

[dizzy1979 in reply to SeasideSusie]

Oh good I’d be right behind you in the patience queue, I have none! I am taking tiromel, looking at the blister pack the batch number is 16v089, exp 08/23.So I felt great first week, I think I was overdosing, and then dropped down on the t3, slightly upped the t4, when I dropped the t3 to much I was so cold, so added an extra 1/4 to half a tablet per day in total and that has stopped, so it must work to a point, I’m just so tired, and still not sleeping well ( i love to sleep ), I find I am not falling asleep on the sofa though, but from 3 am I am unsettled and awake for periods. I thought it could be the nerve damage in my neck waking me but even when I am dosed up in for codamol I am still waking. I just don’t know what I need more or less off. I’m not sure I can manage another 3 or more weeks like this x

[Yeswithasmile in reply to dizzy1979]

I’m with you there. I managed to get a trial of t3 and I’m coming into week 4 today. I’m on 75mcg levo and 10mcg t3. I thought I was just feeling some more energy and now 🤷‍♀️ Feel tired, fat and fed up. Keep telling myself I have to be patient but it is frustrating.

I have noticed 2 possible benefits. Not as constipated and toe nails improving. I think they were infected. Yuk. One fell off after going brown/black. Re grew slowly and was still dark but is almost normal colour this week. That’s a bonus lol.

My vits were all up (apart from vit d) still supplementing so it’s just the waiting game which seems to be the story of our lives. 🙄.

I do hope that we look back in a couple of weeks and feel a bit more positive 🤞🏻🤞🏻🤞🏻 I am with Seasidesusie and feel it takes me 10 weeks about to feel settled with levo but thought I’d go for bloods at 8 this time (although I’d love to do 6 really 🤣)

[dizzy1979 in reply to Yeswithasmile]

Your s fortunate to get a goal of t3, what was to taking before the trial, just levo? As if so how much? I amTaking 12.75mcg of t3, split twice a day. When I was taking more my husband commented on how I’d lost weight, for one week, and now I have ballooned up again. It’s such a struggle. You and seaside Susie are just so good to wait, o know I will go too early, esp if I am still feeling rubbish. It obv won’t help me in the long run, but whilst my gp is happy to send me for the tests I am Happy to go . I hope it all Works out for you, and we do as you suggest look back in a few weeks and rejoice that it’s all working x

[Yeswithasmile in reply to dizzy1979]

I felt and feel lucky. I couldn’t quite believe it when the endo agreed and said he’d put it forward at the next meeting. I expected to wait months and admit I did buy some tiromel to try but 2 weeks later I had a prescription. Obviously the information from the peeps on here regarding supplementing etc etc was invaluable and I’m so grateful.

I was on 75mcg but September it was raised to 100mcg. When I did bloods 12 weeks later my t3 had only gone up 0.5%. I had a comprehensive blood test through my gastro at the hospital in January and it was clear the supplementing had helped b12 but there were a couple of minor unrelated raises in the tests so I put it that my body was not working efficiently and that I needed t3 to save the nhs further. Unfortunately as I have 75mcg it’s teva. The chemist (tried several) wouldn’t do 50mcg and 25mcg so I took the teva even though I know it’s weak for me but I was hoping the t3 would still help because I didn’t want to have to pester the endo by email again. I expect to t4 to plummet but my t3 will remain stable?! I can only wait and see.

What you have to hold on to is that it takes time for the t3 to get into all your tissue and that if you jump too quick you’ll likely feel worse for longer. It is such a struggle and I do understand but I remember from levo increases that I’d have an intial burst before it seemed to stabilise but you need it to stabilise so you know exactly what to do next without causing further ill health from possibly overdoing it by giving yourself too much.

As for the weight thing, it would be the easiest thing in the world to up it to lose weight but and I speak from experience, preoccupation with weight rather than health is not a good thing. It is very easy to fall into that trap. We just have to keep telling ourselves that we don’t want to blow it by losing patience and increasing without giving our bodies a chance to absorb what we are taking. I’m glad to write this as I know exactly where you’re coming from but I also know this is right and need to remind myself too!!

[jrbarnes in reply to SeasideSusie]

Hi, does 8:1 ratio mean that you take more T4? I get lost with all these ratios.

[SeasideSusie Remembering in reply to jrbarnes]

Yes, as I said T4 to T3 ratio is 8:1

[beh1 in reply to jrbarnes]

Forgive me if I’m being condescending and if the ratio stuff is now clear, just ignore me! A ratio of t4:t3 of 8:1 means she takes 8x as much t4 as t3. So, for instance, her doses might be 100mcg levothyroxine and 12.5mcg liothyronine.

[jrbarnes in reply to beh1]

Thanks for clarifying and no you're not condescending. 😀

[Lotika]

I confess to also being fascinated by what everyone else takes and where they feel good through the frees!

I am trying to work out what is my optimal. I am on a T4/T3 trail and so far neither is more than 50% through range. I’ve not knowingly had fT3 more than 50% through range since starting levo years ago. I know I had more energy on T4 only, when fT4 was around 70% through range... so, given that T3 has reduced a lot of symptoms, I would like to try having that higher and fT3 around 50%. Probably easier to convince the NHS than letting me try fT3 higher, given the costs!

[Lalatoot in reply to Lotika]

I can't get my FT4 higher than 43% through range on combo. If I increase my levo dose by 12.5mcg or 25mcg my Ft4 drops and my FT3 increases and I feel awful. So for me my body is telling me that that is enough T4. My Ft3 has been anywhere from 60% through range to just over range. At the mo I am changing nothing to see how things stabilise over a longer term.