I'm trying to take NDT instead of levo, on which I was for around 20 years before, mostly on 75 mcg.
My TSH went out of balance back in October 2022 and between then and now it's been a massive struggle. I increase my T4 slightly (even by 12,5 mcg) and get heart palpitations (heart was checked, all's healthy). I go down a bit and I am very unmedicated with all the hypo symptoms, struggling to function well.
After not seeing much progress with T4 and some unsuccessful synthetic T3 trials, I switched to NDT 7 days ago.
I started from 1/4 of a grain of Erfa, but it was way too little and I upped it up to half a grain the same day.
I started to feel so much better right away. More energy, feeling happier and more positive, and also much calmer. My BP raised to a healthy level (it started to get too low) and I finally felt more with it.
After a few days on half a grain, I increase to 3/4 of a grain.
I've been on that new dose for 4 days now, however I'm starting to notice some strange symtpoms.
First, feeling light headed at times, like things spin around me and I don't have as much balance. It comes for a few moments and goes, but when it comes I feel weird and ungrounded, a bit faint, but not in a weak faint way. Just ungrounded faint and my head feels a bit strange. My BP and pulse remain healthy and normal, I check it during the day.
Second, swollen upper neck glands. It's very uncomfortable and it concerns me. It's 00:17 at night and I got up to have a cup of warm herbal tea to hopefully feel more comfortable in the neck area.
It's too early to test my thyroid levels, I've only just started on NDT (and a month ago TSH was 3.1, T3 was 4.1 and T4 was mid range).
On the one hand, I already feel improvements and I like it if compared to T4 alone. I don't feel undermedicated, I have energy all day - something I haven't experienced on T4 alone in a while ...
On the other hand, I have these new symptoms.
Shall I push ahead with NDT as my body is re-adjusting? Or is it not working for me (but why improvements in other areas)?
P.S. I supplement with iron, folate, B12, D, etc and test my levels regularly. I take it at least 4 hrs away from the meds.
Thank you for your input.
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Juliet_22
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First, feeling light headed at times, like things spin around me and I don't have as much balance. It comes for a few moments and goes, but when it comes I feel weird and ungrounded, a bit faint, but not in a weak faint way. Just ungrounded faint and my head feels a bit strange.
I would personally count this as normal, I call it 'internal dizziness' and experience it upon starting or changing to NDT from either T4 but especially after synthetic T3. It is a strange sensation!
I don't know why it happens. Presumably something to do with disturbance of the HPA axis maybe? But (I am going by my personal experience ) it gets better and eventually stops when you get your dose consistent for long enough as well as high enough. Will only eventually occur again if you start missing doses taking at odd times for an extended period etc.
It also might point to you needing to increase again. Especially as you seem to be taking to it well. I am personally not in the camp of go really slow on NDT, particularly when one has been under medicated for years and effectively walking myexodema state. When I first started NDT I couldn't do well on it until I jumped in at a decent dose. Sometimes starting too slow can also cause issues. I think this approach is predicated on the belief that there's a perfect standardised equivalent between T3/T4 but I don't find that always to be the case - and am very much pro take NDT to tolerance and listen to your body. Your adrenals will soon let you know if they can't keep up.
I'm happy that the Erfa is working for you, well done for finding something that suits you well!
Thank you so much for this, so helpful! How interesting that you increase NDT faster. Intuitively, I feel the same - if your body needs more, why under-medicate it? I will switch to 1 grain tomorrow. Glad to hear that dizziness passes! Can I ask how much NDT are you taking?
I have taken NDT off and on over the years having at times (and presently) swapped to T3/NDT or T3/T4 combo due to supply, cost, and potency issues (Erfa pretty stable in regards to that last point)
When I was rather ignorant and stuck on a measley 75mcg levo for years, I found a doctor from the TUK list and after taking my pulse he put me on Nature Thyroid straight away. He started all his patients on 1 grain split twice a day. So this is what I started with, initially slept well and then quickly found I had serious issues. I was shaking, trembling, couldn't walk.
Immediately stopped it put it in the cupboard. Went back on the dreaded levo but raised the dose. Was stuck in a bad state and sleep ability vanished.
After some time I felt so depressed, I tried NT again. This time I lowered the dose on advice from other people to go even slower, so went to 1/2 grain a day. Became very hypithyroid and still had same issues. So I ended up coming on this forum saying NDT doesn't work for me.
Fast forward feeling rubbish and suicidal on Levo only again. Finally, said I am going to do this my way and grabbed the NT (I might have requested a supplier for some more I can't remember) and took 1 whole grain, then another a few hours later, so immediately 2 grains! It was drastic but by the evening I realised I wasn't having the issues anywhere near as badly asI had before. I had one more grain which was just a little too much because it kept me up. Next day did 2 1/2 grains and felt great! I eventually worked through my entire supply.
Unfortunately as you know NT was withdrawn from the market. I had some success with various others and now take a combo of T4/T3 and a bit of NDT.
NDT is great and just gives different benefits to synthetic meds imo. I am thinking of dropping the levo and replacing with Erfa, But I'm broke at the moment and can't afford to take the 3 ish grains a day I would need.
Gosh, you read some incredible stories here. Sounds like you've been through a lot and regained your life back on NDT. I hope you'll be able to get the finances sorted to be able to go back on NDT again!
When I first started NDT I couldn't do well on it until I jumped in at a decent dose. Sometimes starting too slow can also cause issues. '
Thank you for expressing all this Alanna.
I have expressed the same sentiment on these boards. I appreciate and know for many people it is the best to take it slow to bring in NDT. It is very important advice.
But so is the other way, for some of us. I read so often NDT is not for me, and of course it is not for everyone. But I would bet at least about 20% of the 'not for me' is simply because the body needs more hormones immediately. Every body is different on how it reacts. Because of border issues and finances I have had times of levothyroxine alone, liothyronine added and two types of NDT.
And both times on NDT I felt there is more of a physical pull, that I imagine a drug addict must feel - so incredibly uncomfortable - to up the amount. Especially if you are a larger person, I would imagine. That did not happen while being way undermedicated on Synthroid or Cytomel. Symptoms of hypothyroidism, yes. But not that very physical uncomfortable pull.
EDIT: I do want to add this body pull is different from impatience to go through the six to eight weeks on one level to get a productive & fair blood panel. I believe in pushing through some horrid hypo symptoms and have done that multiple times when I knew I was underdosed, even when I have had an abundance of levothyroxine in my cupboard to up the amount myself. I have always stayed the course for testing and am happy I did. It truly gives you clear insight, as sometimes you do need a level change and sometimes things will change weeks in.
That is not the same as this conversation about how to begin to add NDT.
I think NDT dose increase is a very important discussion for other members to see as well.
I intuitively went with it and stared on half a grain, I know it's supposed to be a quarter for a week, then half, then a low increase to a full, etc.
But if I did it that way, I would probably have been here like other people saying NDT doesn't work for me. I felt under-medicated.
I was ready to do a whole grain within a week. Thanks for the amazing people on this forum, you confirmed that's the right way to go.
So my first day on a full grain a week into the NDT journey, it's 9pm and I'm dancing - literally! I experienced all day energy, with no crashes, all day for the first time in a long time. And I felt so happy, just joy within. And not overly-stimulated at all - happy, energetic, yet calm and peaceful.
I'm actually the type of person who wants to take as little meds as possible, so I don't feel the pull to keep on increasing. I would love to just stay on 1 grain, if I can. But we'll see what the tests show and my symptoms tell me.
But the fact is this - I've been feeling energy all day long since I started taking NDT. Actually, even on half a grain and still undermedicated, I felt better than on thyroxine alone in YEARS! Happy, calm, playful. On T4 I was struggling beyond words, I lost my true self.
I had a lot of resistance towards NDT, fear of making things worse for myself, especially after some stories I read here, taking animal pills (as a plant foods eater).
It's still early days for me to say anything, but so far, I feel different and I love the way I feel, even though my body is still finding it's way with the new meds.
I completely understand that sensation of 'pull' you experience on NDT, it's like a drive. The next dose is sort of needed in a more imperative way. When on levo or T3 I feel I can ignore taking it for quite a while and don't get that 'must have' urge until much longer.And I completely agree with everything you've said. We're all individuals and some of us need the hormones faster, also agree that 20% who say it doesn't agree with them likely would have benefitted from taking more or titrating up more quickly!
How much were you both on, on levothyroxine or combination therapy prior to NDT? Curious. (Juliet & Alanna I just got my brain back and see that you both were on 75 mcg. Alanna did you stay at that level in the back & forth?)
Me: No thyroid in case that is a factor
at hand.
First NDT I was coming from 225 mcg levothyroxine only (hellish times on that) NDT amount unknown as I was self-sourcing without a prescription. Had to stop due to border issues.
Second NDT I was coming from 150 mcg levothyroxine and 25 mcg liothyronine. Had two outrageous blood panels during this time (TSH 27 & low t4 and t3) and just went to a prescription of 155 Erfa for now (due to the 125 pill).
Juliet_22 Lovely to hear about your day. Will be curious to know going forward for you, when you level out
& how your labs read when you do. And one grain would be fantastic! I think I will be at three grains in the end, it is such a financial burden to be so high in dosing. I wanted compounded but my dosing needs are so frustratingly high.
So excited for you to maybe end up at one grain! That would be amazing.
Do you have any current readings/ranges of your ferritin, folate, B12 and vitamin D ?
Do you have Hashimoto's AI disease as some people find that they can't tolerate Natural Desiccated Thyroid as it tends to trigger their immune system response further.
Just looked back as see I replied to you previously - I increased weekly - monitoring on blood pressure, pulse and temperature twice daily - my blood pressure and pulse remained stable and my temperature slowly crept up from 35.4 to 36.6 - where it tends to hover some 5 + years on :
Have you been doing any of this and seeing any changes ?
Yes, my BP went up to a healthy level, I need to start monitoring my temperature. I keep my vitamins in the ideal ranges, I know what they are.
I do have Hashi, yes! Mt TPO is 150, but it's lowered from 650 and been hovering there. My TG is normal. I eat a GF diet and don't do processed food. However, today, the throat swelling is actually better. I will see how it changes when I increase to 1 grain. How much NDT are you taking?
I know now i need my ferritin at around 100 : folate around 20; active B12 75++ ( serum B12 500++ ) and vitamin D around 100:
It doesn't matter what dose I am on-
I am not you nor with the same health issues -
We are all different as to how our bodies utilise the supplements and thyroid hormones and it's more about you listening to your body as to what feels best for you.
As explained previously having Hashimoto's throws a spanner in the works as your own thyroid hormone production is likely erratic -
I do not have a thyroid - RAI thyroid for Graves 2005 :
I started taking NDT years ago , I also started with 1/4 grains as advised but soon realised that I needed more, I have no thyroid. I increased by 1/4's every week until I reached 2.25 grains which was perfect for me. If I am ever undermedicated i.e. low FT3 I start to feel dizzy to it's the body asking for more hormone. Good Luck.
Ok, I got it, so the body needs more. I will increase to a full grain tomorrow, it's been a week here as well. Thank you!
I am not a medical professional. I have just collated helpful information available on adrenals found in different, reputable thyroid help books.
Adrenals do not get enough recognition for their essential role in the effective metabolism of thyroid medication. For some people taking thyroid medication is enough to get adrenals working again, for others it isn’t.
If you are having problems raising/tolerating/having no benefit from/feeling worse from your thyroid meds consider cortisol.
Low cortisol symptoms (these are not exclusive to low cortisol):
Negative or no response to thyroid medication
Chest pains
Nausea
Fatigue
Insomnia
Waking through the night
Anxiety
Depression
Abdominal fat
Weight gain or loss
Tinnitus
Low blood pressure
Dizziness on standing
Sensitivity to light
Palpitations
Thumping heart beat
Menstrual irregularities
Hypoglycemia
High appetite
Low appetite
Headaches / head pressure
"At least 50% of hypothyroid patients may have an adrenal problem and without discovering and treating that problem you will be unable to benefit from thyroid treatment." (Stop The Thyroid Madness, Janie Bowthorpe)
"Low cortisol causes T3 to work less effectively within the cells. This is because T3 and cortisol are partners within our cells. High cortisol also causes problems and can reduce the effectiveness of T3 within the cells, hence thyroid patients with high cortisol often complain of feeling hypothyroid even when they appear to have reasonable or low FT3 levels. When patients try to raise T3 levels in the presence of low cortisol, they may find that the body compensates for low cortisol by producing more adrenaline. This can cause anxiety, rapid heart rate, the feeling of heart palpitations etc. This is usually the adrenaline response rather than a direct issue with the T3. Very often, it is the low cortisol that is at the root." (Paul Robinson website)
"Whatever you may be told, adrenal insufficiency in thyroid disorders is very common indeed and should always be considered at the onset of treatment. Failure to respond to thyroid supplementation, or actually feeling less well, is likely more often than not to involve the low adrenal reserve syndrome." (Peatfield “how to look after your thyroid”)
"If, upon starting NDT [or T3], you experience symptoms, including anxiety, insomnia, shakiness, sweating, dizziness, feeling spaced out it's a strong sign that you may need adrenal support." (Tpauk website)
Adrenal testing: 4 point saliva test from Regenerus Labs is good if you suspect moderately low cortisol.
If you think you have a more profound cortisol issue then you need to ask your GP for -
SYNACTHEN
ALDOSTERONE
RENIN
ELECTROLYES
ADRENAL ANTIBODIES
Blood tests are inferior to saliva tests because bloods show what is total, saliva shows free and therefore available. But bloods are still valuable and a very important step in ruling out anything more serious than adrenal fatigue.
Interpreting saliva results: Morning sample must be the number at the top of the range, midday must be 75% through the range, afternoon must be 50% through range and evening must be below the top part of the range. If anything comes up lower than this, then this indicates low cortisol. (If cortisol is high then this can be lowered through Phosphorylated Serine)
Interpreting blood results:
A 9am morning cortisol results needs to be in the top 1/4 of the range at least, anything less can be indicative of adrenal insufficiency and needs to be followed up by your GP.
A synacthen test is where the adrenals are artificially stimulated by ACTH (the signal that comes from the pituitary to the adrenals) to see what adrenal hormone you can produce. This test will show you whether you have a primary (with the adrenals) adrenal issue, or a secondary (with the pituitary - therefore the signal that is sent to the adrenals and not the adrenals themselves) adrenal issue. If ACTH is low this is indicative of a pituitary issue (secondary adrenal issue), this can often be rectified by incorporating T3 in your treatment as the pituitary is particularly T3 reliant. If your response to the synacthen is below 420 and/or does not double from the previous result then we can assume a primary adrenal issue.
Aldosterone is a steroid created in a different part of the adrenal cortex. If this comes up low and renin high in conjunction with low sodium then this is further suggestive of a primary adrenal issue (so the adrenals themselves).
Low Cortisol Treatment (after testing):
If you fail a synacthen test this is indicative of adrenal insufficiency and steroid replacement of hydrocortisone will be warranted. This is usually in the realm of 20mg-40mg a day. Sometimes Fludrocortisone is also needed, this is usually around 0.1mg. If you are placed on Fludrocortisone you will need to watch potassium levels, and ask your doctor for extended release potassium if your potassium drops too low. It is also important to invest in high quality salt and liberally use it.
If you have low cortisol and low ACTH but pass the synacthen test this is indicative of a secondary adrenal issue - an issue with the pituitary. This can often be rectified by T3, it is worth trying Paul Robinson’s CT3M for this.
For mildly low cortisol -
According to STTM:
Adrenal Cortex Extract (not whole adrenal gland): On waking 150mg, 100mg at noon, 50mg afternoon, 50mg evening. After 5 days on those doses you can do DATS (Daily Average Temperatures) - Measure BBT 3 times; 3 hrs after waking, 3 hrs after that, 3 hrs after that and add them up to make an average, do this 5 days in a row avoiding ovulation & menstruation. If there is more than 0.2 degrees fluctuation between the temps then Adrenal Cortex Extract needs to be increased. Increase Adrenal Cortex Extract until DATs become stable. If DATs do not ever become stable then Hydrocortisone may be needed. STTM states 25mg/day is a starting dose, broken down as: 10mg on waking, 7.5mg at noon, 5.5mg in afternoon, 2mg before bed. If DATs still won't stabilise then this could indicate an Aldosterone issue.
According to Peatfield:
Adrenal Cortex Extract: Anywhere from 150mg to 600mg in the morning and nothing after midday. He also recommends 20mg of Hydrocortisone for those who are not improved by Adrenal Cortex Extract.
According to Paul Robinson:
Research CT3M (Nb. Many do not find this effective).
Nb. Initially cortisol presence can increase thyroid hormone uptake so much that you may feel over stimulated/strange. Some advise to lower thyroid hormone dosing to let thyroid hormones run down a few days before starting ACE to avoid this.
there are many on here who know much more than I do re NDT etc. I am on it and read every book on it and seen the famous docs.Dr Hertoghe recommends starting on 1/4 grain and increase by same every two weeks. He also believes on supporting the adrenals as you up thyroid but not everyone may need that or go there, he loves hydrocortisone
First, feeling light headed at times, like things spin around me and I don't have as much balance. It comes for a few moments and goes, but when it comes I feel weird and ungrounded, a bit faint, but not in a weak faint way. Just ungrounded faint and my head feels a bit strange.
This all sounds very adrenal to me. I had the same issues when starting ERFA.
If you have not already tested adrenals and are addressing I would strongly recommend.
Hidden has written an extensive document detailing next steps. I would recommend you follow that.
Thank you so much, I tested my cortisol (mine was 385, norm is 135-537) and a 24 hour adrenal saliva test back in the winter (was actually on a high side at 2 points of the day, normal at 2 other points of the day) and renal profile. I hope T3 in NDT will make a difference and my adrenals will benefit too!
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