Hi Folks
I was on 100 levo not feeling great post RAI and levo. so change dover to naturthyroid was so full of hope. Alas though my nails and hair is in better condition my general health has become much worse. I wondered if anyone who was on levo,went to NDT has changed back to levo.it seems a madness to consider it but though i thought i felt rubbish while on levo i feel so much worse now i have to consider it
Yes, it was back in 2000-2002, under guidance from Dr P and then Dr S. I changed from Levo to Armour to Armour +T3 to T3 alone to generic NDT. I didn't do well on any combination. It was Dr S who suggested going back to Levo. I so wanted it to work, to find a soluton and was very disappointed but it just didn't work for me. However, I hadn't had RAI, just non-Hashi's hypothyroidism.
Like you i was desperate for it to work , ihad been undiagnosed despite me being clearly under active for years,then became over active and all they would offer me was the RAI. since being on the naturethryoid my symptoms have been so much worse and i feel really low and my hope were so high before. I have done everything re supplements that i have been advised on. i am about to do a cortisol test int he next few days. Did you feel an improvement having returned to Levo. its all such a minefield.
No, to be honest, I didn't feel any improvement. I had an absolute pig of an endo who only wanted to go by TSH, he lowered and lowered my Levo to get my suppressed TSH in range, which lowered my FT4 and FT3 to ridiculous levels. I wasn't bedbound but I couldn't really do anything. Eventually my GP disagreed with him, increased my Levo to a level where my FT4 was at the top of the range, FT3 still in range and TSH suppressed. She was happy with that, I sacked the endopig.
I was still very symptomatic, eventually had to give up work and now, years later, I'm retired but have been able to afford lots of private tests to see where the problem lies and I think I'm getting to the bottom of the problem (fingers crossed).
With the help of a holistic hormone specialist I am addressing extremely low DHEA, high (but still in range) cortisol, non-existent sex hormones, plus not particularly good conversion of T4 to T3. Four months down the line I am feeling better than I was. I still have to repeat tests to see how things have changed there but my purse needs a bit of a rest so I'm leaving that for now.
Both my go and endo don't know i turned to nature thyroid as they made it more than clear they thought it was dangerous and not necessary. this make its very difficult to go tot he gp for as soon as they test e they will see am what they consider below range. i feel trapped.
Hi
I have just replied to ravensgeo re changing back to levo. from NDT.
Do you mind me asking how did you change back to levo. Did you go back on the dose you were on before changing to NDT or did you take the equivalent dose of levo. to the dose of NDT you were taking.
Any advice would be gratefully received.
lucylocks I just did as I was told by the endopig. At the time I didn't have the knowledge I have now, can't even remember if there were forums like this to gain such knowledge, if there were I didn't know about them.
So endopig just went berserk because I had been taking hydrocortisone (or was it prednisolone?) that Dr P had prescribed (he was prescribing back then) along with the Armour etc. I was told I had to stop everything I had been doing with the private doctors if I wanted him to treat me. I'd run out of money to enable me to continue with private consultations and prescriptions and had no energy to fight or argue.
I was on 2.5 grains NDT at the time and he put me onto 125mcg Levo which was actually the dose I was on before I started Armour (not sure whether that was a coincidence or deliberate by endopig). After 3 months I still had the under range TSH that I'd had on NDT, my FT4 had risen to the top of the range but my FT3 was only just over half way through range. He then reduced me down to 100mcg Levo which brought my TSH into range but my FT4 plummeted to close to the lower end of range and my FT3 to the very bottom of the range and he told me that is where I must stay despite the fact that hypo symptoms had returned, dreadful fatigue, dry, scaly, flaky skin, pasty complexion, puffy eyes, so very obviously hypo but that didn't matter. That is when my GP disagreed with him and increased my Levo. She allowed me to have a suppressed TSH and top of range (even just over) FT4. Unfortunately she has retired and my current GP only goes by TSH, tells me my suppressed TSH means I am over medicated and that I will get osteoporosis and atrial fibrillation. Doesn't give a fig about how you feel.
Looking back now over my old results, and having the knowledge that I have now, I can see that there had always been an imbalance of FT4:FT3, I was converting but not really well enough. And of course there wasn't any mention of vitamins and minerals needing to be tested and deficiencies addressed if necessary.
So I am now adding a little T3 to my Levo but my GP doesn't know and I don't intend telling her.
I see you're doctor doesn't know you are taking NDT. Of course mine at the time did. I think she may have secretly been thinking something along the lines of 'Well, that didn't do you much good, I didn't think it would' and she refused to have anything at all to do with my thyroid whilst I was seeing the private doctors, not even blood tests. But at least when I went back to see her she had no problem and was very supportive regarding increasing my dose and trying to get me back to reasonable health and actually agreed with me when I told her I had no intention of going back to see endopig ever.
maybe i should just go back on levo and see what happens which gp. your story is interesting my endo was useless.
Hi
Many thanks for your reply.
What a shame your old G.P. retired, at least there was one Doctor who knew what they were doing.
My G.P. has now decided after speaking to an endo. I can raise my dose of levo. again. I was O.K. on 125mcg. not brilliant but O.K. I either needed a dose increase or some T3 adding.
I actually did a 24 urine test and it did show that I am converting the T4 into T3 quite well.
I wish now I had tried adding T3 before changing to NDT but after reading how marvellous some members feel on it thought it was the best solution and like you I am disappointed with it.
I am presently on 1 1/2 grains of NDT and was going to increase to 2 grains, then if this did not work I was going to go back to levo. I may have to change to levo. now though as I ordered my NDT three weeks ago and it has still not arrived. Apparently it has been shipped so I think it must be stuck at customs.
Not sure whether to go back to 125mcg. levo. though with me only taking 1 1/2 grains of NDT.
I also have extremely low DHEA but cannot supplement as I had breast cancer years ago and from what I have read DHEA supplement can increase oestrogen and this is something I have to avoid.
Do you mind sending me a P.M. of your holistic hormone specialist, it sounds though they are helping you a lot.
Many thanks and best wishes browny.
lucylocks I will get back to you later, must go out as poor dog hasn't had her walk yet and is crossing her legs 😂
Have you considered combining levo with NDT? Your own thyroid gland would secrete both T4 and T3, so it makes sense to combine the two. I've found this combo works the best for me. You can read how one woman ended up on the combo here: tiredthyroid.com/cv.html
There are no doctors in the area or anywhere near that would allow,prescribe or monitor me doing this alas. i have struggled along first to get diagnosis then treatment but this has been my lowest ebb.joint and muscles stiffness back,pain round liver,nausea,headaches. Having got rid of all joint pain its a blow to have it back again.
I am so sorry to hear this. Your joint pain went away on levo or NDT? Mine went away when I lowered levo and raised NDT, but I still take both, because something's missing if I only take one medication.
I can't see that that would make any sense at all - excuse me interrupting - NDT already contains T4 and T3. And if she can't convert very well - which is the reason most people turn to NDT - then adding in more T4 to slosh around unconverted, doesn't make sense. It might work for some people, and it may be worth a try, but it doesn't make any sense.
sorry so in understand are you saying you think it makes no swense to change back to levo
This person felt worse on NDT, since they wrote: "i thought i felt rubbish while on levo i feel so much worse now." As you know, NDT only has enough T4 for pigs. The human ratio has more T4. That's ONE reason why some people feel worse on NDT, because they're getting too much T3 and not enough T4. I know you disagree with that, but that's ok. Not everything is a conversion issue.
I felt worse on NDT than l did on levo only. I tried adding levo to my NDT, because everyone was going on about ratios. I felt even worse. No, it isn't all about conversion. I just couldn't tolerate any form of T4. But, coversion does come into it, to a greater or lesser degree. And l still think that if she didn't feel well on T3 only, and even worse on NDT, adding T4 to NDT doesn't make any sense at all. I did read her original post before commenting. 
NB make that 'on T4 only', my tablet won't let me go back and correct.
that is very interesting . i did not know that NDt had so little t4. Gosh i am conflicted ,really don't know what to do.
This is where labwork helps. If FT4 is very low in range, but FT3 is relatively higher on NDT, then you MIGHT feel better combining the T4 with NDT. It makes you more balanced. As greygoose said, this doesn't work for everyone, because something else isn't working.
Hi
I have gone over to NDT from levo. and have not found any improvement, in fact I have felt worse some days. I have decided to try another increase and if I do not find any improve I will change back to levo.
I think sometimes levo. does not work well because the Doctors are not putting us on a high enough dose. My Doctor reduced mine because of my low TSH, this is why I changed over to NDT, she has now spoken to an endo and he said he is not worried about my low TSH as long as my T4 does not go over 18 ( it has never been over 14) so Doctor has agreed to increase my levo. again.
My only concern is how to change back to levo. I cannot ask the Doctor as she will not know and as yet I have not told her I am taking NDT.
I will as SeasideSusie how she did it, so look out for her reply.
i am the same don't know how to get back on levo
Hi
How much NDT are you presently taking ?
browny
i am taking 2.5 of naturethroid
Hi
SeasideSusie said she was taking 2.5 grains of NDT and her endo. changed her back to 125mcg. levo. (see her reply to me above)
I am taking 1.5 grains of NDT and I was taking 125mcg. of levo. reduced to 100mcg. by G.P. this is when I decided to try NDT.
Do you have any recent thyroid results to post, also have you had your ferritin, iron, folate, vitamin B12 and vitamin D tested , if so post these results as well and members will be able to advise.
browny
Alas i have not had bloods done for months they said they would leave me alone as they considered me within range. Maybe i am taking too much ndt for someone who was on 100 g levo. They have not tested me for anything other than tsh t4. I as taking fit b12,fit d selenium and vit c but have stopped recently.
I think you need to go back to your G.P. tell him/her you are not feeling well and ask for your thyroid hormones to be tested , TSH, T4 and T3, also all the vitamins I mentioned before.
If these vitamins are not in optimal range they will stop your thyroid meds. working properly.
Insist they test them for you, then when you get the results put them in a new post and members can advise on the best way forward.
Good luck browny.
Hi gp will only do basic test so my husband is ordering the thyroid plus 12 home testing kit from blue horizon. this will give full thyroid panel plus b12,d feritin and more . After barrelling through everything to get well . i find it odd am so scared to go the gp with this latest setback.
That's really good your husband has ordered the Thyroid plus 12 test. When you get the results post them on a new post and members will advise.
It is a sad state of affairs when we feel we cannot go to the Doctor to discuss our thyroid health. Lots of us feel that they just do not understand how we feel and the treatment they give us is not making us feel better.
It maybe that you will feel better with a different combination of meds. or T3 only, but see what your results say and you will get some good advice here.
Good luck browny.
I started out on Levo only, and felt ten times worse than before I started it. Eventually found an endo willing to add in T3, and felt a bit better, but still not back to the way I was before I started Levo.
Then, found a doctor that insisted NDT was THE only way to go. So I went the NDT way, and things got so bad, I eventually was practically bed-bound - went to my part-time job, did badly and upset everyone, then spent the rest of my time in bed.
Finally, through a long, convoluted process, tried T3 only and, at last, started to feel better, and lose some of the many, many kilos I'd packed on, on NDT.
I, too, had great hopes for NDT. I'd heard so much about how great it was. They never talk about the people it doesn't suit - and it doesn't suit everybody. It's all trial and error, I'm afraid, and we're on our own. It's very difficult to find an open-minded doctor, they all have their own agenda.
Changing from Levo/T3 to Thyroid S
Changing from NDT to Levo
Why stay on Levo when changing to T3?
