TL;DR - should I continue to try increasing my NDT dose slightly (from 1.75 to 2 grains per day, split dosing) based on the test results below, though I am getting some symptoms after increase (mild anxiety, hot flushes and sweats, and palpitations)? Further info/details below the results
Inflammation: CRP HS 2.460 mg/L (Range: < 3)
Iron Status : Ferritin 120.00 ug/L (Range: 30 - 207)
Autoimmunity: Thyroglobulin Antibodies X 229.00 kIU/L (Range: 0 - 115)
Thyroid Peroxidase Antibodies X 120.0 kIU/L (Range: 0 - 34)
Good evening all, hoping you may be able to help as I'm a bit confused, again!
I tested last week, on an empty stomach; because this test was mostly for my reference and, if I test 12 hours after my last dose of NDT, I get a bad night's sleep and a day of lower than usual cortisol, this test was done at 7:30 am which was about 4.5 hours after I took 1 grain of NDT out of my usual daily 1.75 grains. The 0.75 was taken as usual the day before around 3pm.
I started on NDT in April '23 and was advised to raise quickly to 2 grains, this gave me some adrenal problems which showed as top of range T3 and below-range TSH. I dropped to 1 grain and built up slowly; during this time I felt predictably awful with terrible hot flushes and sweats. These disappeared once I got up to 1.75 grains in October '23.
I tried briefly to raise my dose around November '23; it made me feel a bit anxious/jittery with palpitations so I thought maybe it was too soon after the previous raise and left it a bit longer.
In general I've been feeling OK-ish on this dose and a lot of symptoms have improved, but felt I could do with a little more oomph. I was quite surprised that my test results came out as low as this, especially when I tested so close to taking my previous dose; this is not far off how my results came out when I was untreated.
After this test I tried again to raise to 2grain but again felt a little anxious and had some palpitations and a few mild hot flushes/sweats again. I've persisted for a couple of days and slightly changed how I split the dose, today I took 1.25 grains at 3am (this is to raise cortisol a la circadian T3), then split the remaining 0.75 roughly evenly at 9am and 3pm ish; I think the anxiety, palpitations and sweats/flushes are better today, too. I have capsules of compounded NDT with rice flour and am having to open these to split the dose, I know this is sub-optimal but am opening the capsules anyway as advised by the pharmacist having found they tend to stick in my throat/oesophagus. The lengths we go to to try to get well!
My bio has a load more info about my rocky road to this point. If you could stand any more info!
So the short question at the end of this long post, if anyone's still with me (THANK YOU if you are!!) is, should I continue to try to raise my dose and does anyone have any ideas why I'm getting these symptoms - is it normal when trying to raise as you get closer to optimal? Is it possible there's something else going on, other than my ongoing slightly-low cortisol?
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FoggyThinker
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With NDT you treat to symptom relief and not a blood test and why do you want to get to 2 grains if you feel well and improved on this lower dose ?
I do not split my dose but am optimal on 1 + 1/2 grains taken at 2/3 am at a toilet break but I have had RAI thyroid ablation for Graves Disease so at this point in time believe I haven't a thyroid to interfere or restrict my ability to fully absorb and utilise the thyroid hormones.
If I increase this dose I become a bit anxious and just less comfortable in my body, and I arrange a fasting blood test at around 10 /12 hours - my TSH is fully suppressed at 0.01 and my T3 around 90/110% with a T4 t 25/30% through the ranges.
Having Hashimoto's does put a spanner in the works as you are liable to own erratic thyroid hormone production as this AI disease progressively attacks and disables your thyroid causing ' swings' in symptoms and blood test readings.
There are some Hashimoto's patients who van't tolerate this treatment option as introducing further natural thyroid into their system triggers their immune system further and need to stay on synthetic treatment options.
Just for reference - I know now I need my ferritin at around 100 - folate around 20 - active B12 @ 75 ++ ( serum B12 @ 500 ++ ) and vitamin D at around 100 for optimal conversion of the NDT.
Thanks as ever pennyannie lots to think about there.
I feel a lot better than I was, and if that's the best I'm going to feel then that's fine. I just wanted to see if there was a little further improvement to be had if I raised a bit further. I think I've seen you write before that you dose according to symptoms with NDT, but I did also feel that those test results seemed VERY low (or high regarding the TSH).
I've also seen people mention that you can feel worse when raising dose, temporarily, so wasn't sure if what I'm observing is just normal.
That's an interesting point about NDT not suiting some with hashi's, I've heard a few people say they do better on T4 & T3 so maybe that's why? Also being able to adjust the ratio seems like it would be helpful. I think it might even be cheaper, which would be nice. I regret now that I went straight for NDT, really, but you live and learn.
Vitamin D is creeping up fairly slowly so maybe I need to look into my dose of this, I increased from 3000iu to 5000iu around beginning of November and it's gone up from memory about 20 nmol/l, I think the others are all quite a lot improved and close to optimal now I'm on the "forum plan" of Thorne basic bs, D3 k2 and magnesium, gluten free and eating liver and liver pate.
Thank you so much again for taking time to help me out
When I switched to NDT if I went over 1 + 1/2 grains I would get horrible symptoms that I assume were my symptoms of over medication - mostly just felt uncomfortable in my skin and anxious - and I also misread the instructions ( I'm dyslexic and at the time thinking I was also dealing with dementia ) ) and didn't split my dose.
I gave myself 8 weeks on this first trial and week by week felt so much better especially in my cognitive functions and totally surprised with my first set of blood as my T4 was very low but my T3 slightly over the range - and the opposite of what I had been used to on T4 monotherapy - but I felt so much better - no signs of dementia - and most days my dyslexia is not a challenge and a ' thing ' of the past for me .
Just a pity I didn't get a diagnosis of hypothyroidism as a child as now I understand this insidious disease has hindered my life from a child - but I never had ' the words ' .
I totally accept I'm not where I was before I became ill with Graves and had RAI thyroid ablation back in 2005 but I am much improved from where the NHS treatment left me.
All you can do is try - I've since tried aiming for ' 2 grains ' and split my dose a couple of times thinking I might find more energy - but it's not worked and now I just accept if I can't stay awake past 10 pm - I've this laptop.
TiggerMe thank you too, my previous reply seems to have got lost! That link is really helpful, I increased my D3 dose end ofOctober/beginning of November but maybe need a bit more; it's better than it was but still needs to improve, and if overlooked that. Thank you
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