I’ve recently switched from NDT to Levothyoxine and Liothyronine. This was because I started getting hypo symptoms and it turned out my T4 was low so my endo supplemented me with T4. Then I
Asked him to look into the possibility of reverse T3 for why I was becoming hypo again with hair falling out. He said he would switch me over to pure T3. So now I take 150mcg of levo and 20mcg Liothyronine.
Is anyone else on this combo and has it helped with hair loss, hypo symptoms, weight gain and puffiness?
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Bushbaby83
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Bushbaby, many of us are on that combo. However it does take a while to find the doses that suit. For some like me it has taken 2 years of adjusting 1 dose at a time, waiting 8 weeks, blood tests and so on. On combo it is a very individual thing to find the levels of ft4 and ft3 that suit you and the doses to match.
When were vitamin D, folate, ferritin and B12 levels last tested
What vitamin supplements are you currently
Are you on strictly gluten free diet or dairy free diet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine or T3
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
plus both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test
On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
I’m actually being tested for Coeliac disease. I have been predominantly gluten free for my adult life but over the past year or so let it creep back in and that’s when the troubles started. I think my endo is only paying lip service to the reverse t3 thing. I have asked to switch also so I can try and get them on the nhs.
My folate has started to dip since eating gluten and my vitamin has been fluctuating over the last year and has been quite low at one point. Iron was high for a while but is now dipping but well in normal range and B12 was high ages ago but I was supplementing at the time.
Since all this has happened I’m now taking hair supplements, folic acid, vitamin C and Zinc, D, K2, silica, selenium, magnesium, omega three from algae, probiotic, B12 and 5HTP.
Medication wise I am on low dose naltrexone and also Hydroxychloroquine for Sjögren’s syndrome.
Which NDT were you taking? I'm changing over from NDT to T4 + T3 because of side effects of NDT.
I tried Erfa and one of the reasons I gave that up was because my hair started thinning. It's one of the possible side effects of Erfa and I've seen that reported here before.
I’ve been on it 13 days now and can’t say I really feel any different - though am tired! I’m on 100mg levo and 30 of erfa - was previously on 150mg levo.
@BB why didn't you/he just up the NDT if you didn't have enough T4. NDT is 1 part T3 and 4 parts T4 - approximately. Now it sounds like you are low something if your hair is falling out.
Because everytime he tried that previously I would get heart palpitations. Also, in order to try and flush out reverse t3 you need to slowly increase t3. I personally think the palpitations were caused by gluten though as I don’t seem to get them when I’m not eating it but have only just pieced that together. I’ve always been predominantly gluten free but let it creep back in last year. Then I stopped responding to meds and had a whole host of issues so now being assessed for coeliac.
On NDT you get "heart feelings" I'll call them when you are low and then when you are high you get crashing heart palps, like you are having a heart attack. On NDT you don't worry about blood tests (they are for doctor) , drive it on symptoms and how you feel. Do you have a good temperature, hands and feet don't feel cold, skin not too dry, hair not falling out, eye glass' script not altering, hands and feet not tingling, not short on breath after walking up a flight of stairs, have good energy levels, good sleep patterns.
On NDT, start on 60mg and after a few weeks add 30mg and see how you feel, then add another 30mg a month later. Keep doing this until you get hyper symptoms, then back down by 30mg. You can also split dose. I take 60 for breakfast and 60 with dinner. By taking with food you get a delayed release that lasts 4-5 hours. And stops me feeling hyper like I would if I took 120mg all at once. You can also take 120mg and then 180mg every second day to just get a smidge over 120. I chew my NDT and swallow with food or I get re-flux after a few days swallowing it with water. You just have to experiment on yourself to work out what works for you.
Agree - if you are correctly medicated your prescription should be reasonably stable. But if you suddenly change alot - you should consider somethings wrong/changed on the thyroid front. I find that everything (problems) , is now thyroid related for me. Example. I had phantom vibration syndrome in my left hip for about 3 months. I increased my NDT by 30mg and it went away . Or I cant sleep, put NDT down 30mg and I sleep better. Spot the problem here.
2 x 60mg pills per day. Unless I'm feeling cold and I'll take 25mcg extra of Levo. For some reason Levo warms me up. But it gives me a nervous bladder. Levo is measured in mcg (micro-grams) and NDT in mg (milligrams).
100mcg of levo is about equivalent to 60mg of NDT.
jamesal0Thanks for the chart, that’s useful. And it’s interesting to hear you’re only really taking ndt- seems a high dose too so great that you’ve managed to get it.
I can’t say I really feel that different taking 100 mcg levo and 30mg Ndt but it’s only been 2 weeks - I feel quite tired but I’ve had a crazy few weeks at work and now away with the kids on holiday so I’ve not really had the right conditions to monitor how I feel. In conjunction with the tablets I’m also minimising my gluten intake and feel that’s helping me feel way less bloated and puffy. I have hashis and my thyroid gland is still a little enlarged
Hi Bellsonit. NDT is funny stuff you can actually take quite a bit more gram for gram than you can Levo. I know people that take 5 x 60mg tablets per day . They seem pretty normal, but they can tolerate heaps of NDT.
If I feel tired, particularly at 4-5pm, I'll take another 30mg NDT. So some days I'm up at 150mg and then two days later I'll skip 60mg as I'm feeling Hyper. To do this you need a good stash of NDT. It's not cheep but you can buy it online. For the price of a good real coffee you can buy a days worth of high quality NDT. The other thing is there is all different flavors (brands) and sources (cow, pig etc). I experimented with the stuff for a few years. I find every batch I get through my local pharmacy is different too. I chew my caps to stop reflux, so I get to taste it and each batch tastes a little bit different. One I had recently tasted meaty. Current one tastes like it is cut with Levo - sort of synthetic.
I'm very gluten free because I'm a diagnosed Celiac. Which is the under lying reason for most hashimoto's - just my belief, many would argue not.
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