I’ve been 10 weeks on the above dose and just seen my Endo. Initially I felt really good (by comparison) for the first 4 weeks; my first time on NDT and a Noticeable Improvement. Smoother than 100% T3. Then I just began declining again and by end of last week I was feeling really low and utterly exhausted, hair falling out, weak... the usual miseries (seems earlier post). So my results from 6 January:
TSH <0.005 (0.40-4.00)
Free T4 9.0 (9.0-19.0)
Free T3 5.5 (2.6-6.0)
From 14 December 2017:
Iron 24.7 (5.0-30.0)
Ferritin 54 (30-300)
Active B12 >128 (>35)
Taking iron, C, B12, B complex, D, K2, calcium, selenium, zinc, magnesium for about 6 months. Ferritin has been as low as 18 about 20 months ago, improving slowly.
Endo’s advice is increase NDT to 3 grains and reduce T3 to 50mcg for 6 weeks (then bloods again) then if bloods okay but still feel lousy onto 4 grains NDT and 40mcg T3. So far no signs of over-medication symptoms-wise. So frustrating that I felt noticeably improved for nearly 2 whole weeks in a row, and then down down down again.
Any thoughts welcome. I’m determined to get well, but boy this is a long slow painful marathon!
BBxx
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Blue_Bee
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When we take thyroid hormone replacements the aim is to relieve us of our clinical symptoms, so that's the best way to judge if we are not yet on an optimum of hormones.
Blood tests were introduced along with levothyroxine - T4 only, so if we have NDT or T3 in the mix I doubt blood tests can be of much use, except to tell us where the TSH is.
It is a slow journey to get well and when we begin to feel well and are hopeful we're on the right dose but a couple of weeks later not so well, you should increase NDT by 1/4 tablet and every 2 weeks thereafter until you are completely symptom-free.
I am not medically qualified but had undiagnosed hypothyroidism but am now well.
I think your low ferritin is still a bit of an issue
How much ferrous fumerate are you taking
Would you/do you eat liver once a week, this also helps
Do you have symptoms of low stomach acid and/or do you take Apple cider vinegar or Betaine HCL to help improve
Your endo seems to have a good idea of what's happening. Plod onwards and see how this increase in NDT and reduction in T3 works out after 6 weeks (yes totally agree about tge time it all takes!)
Making sure to get 2 or 3 ten minute walks or similar exercise per day helps too
I was taking 87.7 mg iron glycinate equivalent to 24mg iron, and I’ve recently doubled the dose as I was still feeling as if my whole body was oxygen-starved. What do you think?
Not yet on the weekly liver... okay, that starts this coming weekend — how much is an adequate serve of liver?
Not sure if my stomach acid is low or high, but after information here I have very slowly been weening off the PPI (protein pump inhibitors) medication I’ve been on for the last 5 or so years— warning! warning! This week will be my 2nd week free of PPIs. I’m doing okay, only very mild occasional reflux. I’m wondering what the next step would be SlowDragon? Any advice on this very welcome please
Your TSH is very suppressed and FT3 is close to top of range. FT4 is low because you are taking proportionally much more T3 than T4. Although you are not biochemically overmedicated not everyone does well with FT3 top of range and it may be worth reducing T3 dose to see whether symptoms improve.
1 grain NDT is equivalent to 25mcg T3. I think you will be overmedicated if you follow your endo's advice to increase NDT to 3 grains and reduce T3 by 10mcg.
Iron is good so I don't think you need to worry about ferritin.
Active B12 is high so you can stop supplementing B12 for a while.
Clutter, I’m loathe to stop the B12, as I just don’t want to get low again. I was thinking of dropping from 5,000mcg sublingual to 1,000. Any risks with this approach?
Hi Clutter , SlowDragon and shaws Thanks to you 3 lovely ones for replying This Is a slow process alright and it helps so much to have your support. I’m replying long-form here and short-form above there is so much useful information to keep across answering this way helps me to absorb it all. Hope that’s okay...
There are some contra-views in the above, which is understandable. This is what I take from it:
My Symptoms are the guiding light in this now 2-Year meds trials and adjustment process, all under medical guidance. Trialling the conventional treatment first, and now the original treatment NDT plus some new, T3. I’ve come to Trust my Symptoms; I track them; and fortunately 6 months ago I found an Endo who trusts me too. We are making slow progress.
Over-medicated? I think not Clutter. Due to the fact that I don’t have any Symptoms of over-medication, and I started with just 10mcg of slow release T3 way back in May last year. It’s been a slow tweak up and now down of the proper T3 (not slow-release, which Endo says is a rip-off anyway). I agree with you though in that I think eventually I’ll be on less T3 once the NDT is increased sufficiently.
Suppressed THS Endo said we’re not going to worry about the TSH, just focus on getting the Ratio of T4:T3 right for me in the mix of NDT and T3. We’re reducing the T3 as NDT is increased and he now wants me to do a split dose of the T3 morning and early afternoon.
Are bloods relevant? Given the amount of meds I’m taking vs still plenty of clinical symptoms, I’m inclined to agree with Shaws in that — for me, with possible poor conversion (and we are all different) — what’s in my blood and what’s actually getting into every cell of my body, are two different things. I’m leaving the blood knowledge to my Endo — I’m sure he will let me know if he’s concerned, I see him regularly, and we’ll take it from there. Clutter, I was surprised too (and relieved!) that Endo increased the NDT , but he did Decrease the T3 — and he said we need to get the RATIO right which I found interesting.
Iron still an issue? Shaws, in my guts I think you’re right. Iron has been a struggle for me as long as I can remember. I’ll respond above and will continue to work on this.
Active B12 is high Thanks Clutter, I was wondering if I can leave that for a bit... maybe I’ll just reduce to a maintenance dose?
Increase NDT by 1/4 tablet Shaws unfortunately that’s not possible for me in Australia, unless I wanted to import NDT tablets from Thailand or wherever, which I don’t. Not so long as I have a regulated supply locally. The only local supply is compounded in capsule form — just too hard to be cutting, and my Endo seems to prefer the 6 week regime as I guess it gives the T4 part of NDT enough time to stabilise in my system; whereas T3 would only take a couple of weeks to stabilise, true.
Right! Well, plenty for me to think about. This support and your experience helps me clarify where I’m at and that is essential on this long journey. I’m off to my low-stress job now, where I get 4 10min walks daily. Still can’t believe that’s all I can manage... Patience hey?
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Symptoms on 2 grains of NDT - to increase or decrease !! 😳🤔
First results after switching to NDT. Help pls ... 
Going up to 3 grains of NDT and get retested.
