Yesterday I had my first appointment with an endo (who received great reviews from forum members). He thinks my main thyroid problem is impaired conversion of T4 into FT3. He prescribed NDT! I would love to take NDT but thought it would not work for me because of my conversion problem? I've heard that NDT can even make "poor converters" feel worse (because it's about 80% T4)? I did not question the endo's decision to prescribe NDT because I did not want to seem disrespectful. I don't know what to do? Any info or advice hugely appreciated!
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Venus77
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What did the Endo have to say about your adrenal issues? And what is your prescription per day?
Having read some of your previous posts I can fully understand why you might be nervous about starting NDT if there is a chance of adrenal complications.
I never really took Levo for any length of time before I made the switch to NDT (also had a brief stint with T3-only). I’m a very good converter which is not always a good think either - my TSH is actually in range, T4 way below the range and T3 always a few digits over range. I might have been better off on Levo - exactly as some posters original suggested.
Have you ever been on any thyroid replacement up to now?
It is highly unlikely that the Endo was ever going to give you a Levo and T3 prescription and if you’d got that, well your GP may not necessarily have agreed to take over that prescription in the future . Leaving you hundreds of pounds out of pocket and having to pay for private prescriptions. To have been given NDT was an excellent result. Going forward - will this Endo continue to give you prescriptions and will you have to pay for them ?... or will he pass this over to your GP? It may become problematic if he was to pass the responsibility of prescribing over. So.... would you have preferred for him to have given you Levo instead?
Thanks loads for your thoughtful and informative reply!
Endo told me to stop taking pregnenolone & DHEA (without tapering off) and, after waiting 1 week, then do morning fasting blood cortisol test. If it's low, he'll do further testing for adrenal insufficiency.
Prescription of NDT is: 7 am 1/4 grain, 12 pm 1/4 grain, 4 pm 1/4 grain.
I think I'd better do the cortisol test before beginning any type of thyroid med.
Interesting to hear about the problems of being a good converter! Will you switch back to Levo only?
In 2005 a private GP diagnosed me with Wilson's Thyroid Syndrome. That diagnosis was based solely on my symptoms and low body temp and no confirmatory tests were done. The doctor prescribed sustained release T3 which made my edema unbearably severe and elevated my heart rate dangerously high and made me feel dreadful so I stopped taking it. That was ages ago though and I've no idea what the dose was so suspect it was too high.
A few months ago a functional med practitioner suggested I take "GTA-Forte II" which he believes contains a tiny amount of NDT but when I emailed the manufacturer about it they replied,
"We do not claim any T3 in the GTA products." Taking 1 cap daily I felt nothing so I tried 2 caps and then had racing fluttering heart and increased anxiety and worsened insomnia so I stopped taking it.
I'm seeing the endo privately and the NHS will not be involved at any stage.
Because of my impaired conversion, I would never consider taking Levo.
How did you uncover your adrenal issues? Was that also through a private GP? Private endo? Where is your functional med practitioner located? Many thanks!
Hi I did the DUTCH test for hormones and that showed my metabolised cortisol (cortisol production) was incredibly low. That led the functional med practitioner to diagnose me with "stage 3 adrenal fatigue" but, I've recently discovered, that is not a real diagnosis and he turned out to be dangerously ignorant. The treatments he put me on made me much more ill.
Ooh, that doesn’t sound like a good experience. I’m sorry that happened to you. I am really curious about your functional med prac. Are you willing to PM me his/her name?
I don’t think I’d go back on Levo as even though on a low dose it brought my TSH down it caused 2 weeks of depression and that alone was enough to make me switch.
NDT may not be the best for me even though it makes me quite symptomless. The free T3 is always over range but TSH is in range. My last blood test on 2.75 grains and it was TSH 2 with free T3 of 9. Maybe less grains of NDT and some T3.
You’ve had some really good advice from other members on here and I really hope you can sort out your adrenal issues and start your NDT soon.
Hello again Helena Thanks so much for your well wishes! I'm hugely grateful for all of the information and wise advice from forum members Good luck with optimising your medication X
I’m a poor converter. I’m better on NDT than on levothyroxine, but I need T3 also to feel properly well. I pay for my own NDT and if necessary will source T3 from abroad. I need both to have any quality of life, the cost is a worry but I feel I have no choice.
Thanks so much for your very helpful reply! Great that you've finally found what works for you, medication wise, although the cost is a concern. Which brand of NDT do you use?
I’m not sure I understand. If you are not converting T4 to T3, then you need extra T3. NDT contains a some T3.
Bigger concerns are how much T3 do you need, and if you have Hashimoto’s, will you be among those of us with Hashi’s that get autoimmune reactions to NDT? One of several problems with NDT is that it’s a fixed amount of T3 and T4. If you aren’t converting but need more T3 and you increase your dose, on straight NDT you are forced to increase your T4 too. That can be the demise of people who don’t convert. They don’t need more T4 to increase their FT4, they just need more T3. Some NDT takers also take additional synthetic T3, in order to get the amount that they need.
Thanks very much for your hugely helpful reply! You have confirmed and clarified things for me. Maybe I should try taking a tiny amount of NDT and see how I feel and then, if necessary, add some synthetic T3 (which I already have)? Any suggestions massively appreciated!
You’re welcome! The biggest question should be: why are you don’t converting? What is blocking your conversion? Is it Hashimoto’s? I hope your endo tested both your antibodies. Hashimoto’s and autoimmune flare ups can be the main reason people don’t convert. Or, other illnesses, even minor ones.
Have you been on any thyroid meds prior to this? Do your bloods show low FT3 and low FT4, and high TSH? I’m trying to figure out what your goal aside from raiding your FT3. You’ve already got T3 in your possession, endo suggested NDT, but you’re thinking of taking a tiny amount of NDT, might add synthetic T3.
A tiny amount of NDT will have a tiny amount of T3. T3 is fast acting and has a short half life. You probably won’t feel any better on a tiny amount of NDT. The fast action and short half lug of T3 is why many people take T3 at least twice or more per day. Brands may vary, but one grain of NDT only has 4.5 mcg T3 in it. That is not a lot, but you possibly don’t need a lot.
I take synthetic. I had bad reactions to NDT. I like my T3 dispensed in 5 mcg pills. My prescription is for 15 mcg T3 per day, and 88 mcg T4. One 5 mcg T3 is not enough for me. I take two 5’s with my T4 in the am and some days, my third 5 mcg T3. It depends on how I feel. My FT3 is in perfect, if not almost too high range, and I have no hypo symptoms.
I've done thyroid testing 4 times and my antibodies have always been very low but I know that does not rule out the possibility of having Hashimoto's.
In my reply to Helena (in this post) I explained what thyroid meds I've tried so far.
I've posted my test results in previous posts but, to summarise, my FT3 is below range while my TT4 and FT4 are in normal range and my RT3 is above range and my TSH is low normal. My aim is to raise FT3.
So sorry that you had bad reactions to NDT! Splendid that you're symptom-free on T3 though!
I'm dreading taking any type of thyroid med (fearing that I'll feel worse) but I'm extremely ill, with crippling hypo symptoms, so I must try something!
Where do you get T3? Are there still NHS doctors willing/able to prescribe it, or is it only prescribed privately? (I’m assuming you have to have a prescription, ...or can you find on the internet ‘OTC’?)
Right I was I. The same boat as you though o worked out myself I wasn't converting as my FT4 was very high and my FT3 very low by comparison. You can only tell if you have a conversion issue if on Levo as when adding in T3 they results are read differently and only FT3 is accurate as FT4 can fall so you can no longer to compare the two.
I was also wanting to go back to NDT as that is what I started out on 30+ years ago on the NHS.
So treating conversion issues doesn't happen overnight. First get Vit D, B12, folate and ferritin tested. These need to be optimal not just in range. Look at SeasideSusie's posts for what the readings should be and more importantly how to get then there. It took be 5 months to reverse mind and thatdependa on how low I was to start with but know you have made me think more about it it was 5 months when I was retested so if may have been less, I don't know. Soon enough I got the conversion sorted and test book results I changed to NDT. Now with good readings you may prefer to remain on Levo as you can easily see if conversion becomes a problem but with the endos help I would be tempted to give NDT a go.
Thanks lots for your thoughtful and encouraging reply! Excellent that you got your conversion normalised and can now take NDT! I had my vit D, B12, folate, ferritin tested recently and I'm working on getting them optimised.
There are a few ways you can tell if you are not converting. First is by having a much lower FT3 than FT4, prior to starting meds. Second is by testing Reverse T3 and calculating your RT3 and T3 Ratio. Your result will tell you if you’re converting. Third is if after starting meds, your FT3 is still too low. Also, if you have Hashimoto’s or another autoimmune disease, it’s common to have conversion problems. Elevated antibodies of any type can interfere with conversion, especially if your antibodies indicate your thyroid is being attacked.
FT3 and FT4 results are read the same: by how your results fall in relationship to the lab range. Whatever your results are is what your current status is. Each test stands on its own and is of equal importance. Taking T3 should not make T4 drop. If it does, there is probably something else going on, like need more T4.
Venus, I think the only way you can tell which form of thyroid hormone will help you is by trying them.
NDT contains about 50% T3 by potency (as in, there is less T3 in the tablet, but T3 is a lot stronger than T4. Looking at blood tests, most people on NDT are mainly using the T3 and not the T4.
NDT also has a lot of other trace chemicals in it as well as T4 and T3. That's what helped me, as I felt a lot better in NDT than I had in a similar amount of synthetic T4 and T3. It can be easier to take by people who are not absorbing and making use of synthetic hormones.
But I think the main thing is to just try it out, look at your blood tests and see how you feel. The hours dose until your blood tests look as good as they will get, and give it a good trial of several months. You may find in the end that you want to change and try T3-only, but giving NDT a good trial is the only way to know whether it will suit you or not.
Thanks massively for your informative and interesting reply! Glad you reminded me about how much stronger T3 is (in comparison to T4), as that's an important consideration. Yes, it's wonderful that NDT contains extra components (including T1 and T2, etc) which provide additional benefits Brilliant that you feel better on NDT! Thanks for your encouragement to try experimenting, which does seem to be my only option!
Yes, I think experimenting is the only real option. We just need to try out each format of hormone in turn.
NDT is a good one to have the opportunity to try, as its the hardest one to get hold of in the UK. Many people really swear by it, and I think it's tied with T3-only as the most popular option for people once they've struggled with the NHS treatment.
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Does anyone NOT have a conversion issue, but still have low FT3??
Does fixing a conversion problem change medication needs?
Shocking disparity in blood results from different labs
Latest thyroid results, may have conversion problem.
