I think I need to add adrenal support to my NDT but looking for some help on the practicalities and open to ideas about whether this is my problem. Specifically, do I need to stop NDT first? If so, how slowly should I taper off? I'd really like to spend as little time as necessary feeling so hypo!
I reached a dose of 2 grains/day of NDT and felt AMAZING for about 4 weeks then started to notice some of my adrenal symptoms - a week of feeling panicky on waking, then a week of taking ages to wake up in the morning. Then I started to feel quite anxious all the time with some chest pains. About this time I did a basic blood test prior to my follow up private GP appointment which confirmed that my FT3 was over range:
THYROID FUNCTION TESTS
Thyroid Stim. Hormone L 0.019 0.270 - 4.2 mIU/L
Free T3 H 7.2 3.1 - 6.8 pmol/L
Free Thyroxine (FT4) 16.2 12 - 22 pmol/L
(blood test results with vitamins taken before treatment shown here for comparison healthunlocked.com/thyroidu... ) tests done around 8am, fasting with only water, last dose NDT around 3pm the previous day as usual, so about 17 hours before the test.
As a result we dropped my NDT to 1.75 grains and the panicky feeling subsided but I quickly began to feel very hypo again with most of my pre-treatment symptoms returning. The brain fog has actually improved again (a little), after a few weeks but it's taken me this long to be able to get around to posting!
Reading Dr. Peatfield's book, he suggests that this pattern is quite common and could be due to adrenal insufficiency, he suggests to stop thyroid treatment (but not how quickly) and to introduce adrenal cortex glandulars (which I have bought but not started) or (I think) cortisone.
STTM agrees, but I've read elsewhere (Blanchard?) to take time release T3 (low dose) and T4. I don't think time release T3 is available here? And I'm keen to get the benefit of the other thyroid hormones and calcitonin, especially as my vitamin D is low.
Would welcome any thoughts and suggestions. I'll add all my test results to my profile now.
Thanks and good health to all
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FoggyThinker
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I’ve been in an almost identical situation so your story resonates with me.
Your FT3 is indeed over range but given that you left so long (17 hours) between last dose and test, will make your test inaccurate. Your FT3 is in fact higher than the blood result indicates. I made the same mistake on both counts - dose slightly too high and working on inaccurate blood results.
Reducing by .25 grain did the trick for me. It’s amazing how such a small dose can make such a huge difference
If your vitamin D is low you need to address that as an issue on its own. You can’t compensate for low vitamin D with anything else. It’s vital.
I wouldn’t worry about glandulars at the moment. That will confuse the situation. I would be inclined to get your vitamin status sorted and stay on 1.75 grains until your FT3 drops down into range. You’ve mentioned Vitamin D but I notice that Vitamin B12 is low too. Just addressing those two issues should make a big difference
It’s important that you change only one thing at a time. In my opinion, STTM isn’t always a good source of advice and in this particular case I certainly wouldn’t take it.
I'm with Everywhere2, you need to address your Vit D and B12 which will likely make a big difference but certainly need sorting before adding something else into the mix.... looking back at your last cortisol test your levels weren't bad (though 11 months ago)
Thanks for your reply TiggerMe and sorry to be slow to reply back. I've also answered Everywhere2 regarding vitamins... I have just done a Regenerus Cortisol Saliva test anyway to get a current view of what's going on. I feel worse than I did when I took that test in some ways - it'll be interesting to see what it shows, but sorting out the vitamins is essential whatever the cortisol results.
Thanks for your reply Hidden and sorry to be so slow to reply back. Really glad to hear that you've found a dose that works
I will make sure to reread the guidance on taking NDT and testing, I just took my usual doses the day before. D'oh.
I hear what you're saying about vitamin D & B12 and I am doing what I think I'm supposed to do to improve them although from reading recent posts I should be taking a higher dose vitamin D than I had been, but from what I read they don't cause my key symptoms, or at least not all of them (still struggling to wake up in the morning and the hot flushes/night sweats/cold flushes are horrendous, I have aches and pains which got worse when I started NDT and are still bad). I would hope by now they're a bit better but I'm thinking to do a full vitamin and Thyroid function test in a few weeks as I have my next GP appointment. I'll do a check back through my responses and have a read around to see if I could do more.
If it is a vitamin problem... I wouldn't have expected to have such a good 6 weeks or so once on 2 grains of NDT. I honestly felt fantastic, better than I think I've ever felt since I was about 16! Does that fit with the vitamin theory? I know biological systems are complex but the good 6 weeks, and the fact that I have good days (like today) and awful days doesn't fit with my understanding of vitamins, as I thought the levels would be slow to change?
Can I ask, did your hypo symptoms return when you adjusted the dose, and then settle? Or did you feel better as soon as the symptoms of being over-replaced resolved?
I agree, I wouldn't go on STTM alone, but Dr Peatfield I feel I can trust, and his explanation of the link between adrenals and thyroid (especially as I've been untreated for about 30 years) does fit with what happened to me. But that's not to say I'm negating the point about vitamins.
I don’t really want to overstate the vitamins issue. I think that would be a mistake as many people who have optimal levels of vitamins still have problems of various sorts.
I felt better within a very short time of reducing my dose so it was clear that overmedication was an issue for me. Symptoms such as hunger, sleeplessness, anxiety disappeared very quickly and a blood test 6 weeks later showed that my thyroid levels were back within range. I remember thinking that I wished I’d done it earlier but it really hadn’t occurred to me that 0.25 grain could make such a huge difference. I had no recurrence of hypo symptoms
It’s interesting that I was on the ‘wrong’ dose for about 6 months before I hit the wall with these overmedication problems. Looking back I recall that this was a time when I had some life stresses which intruded quite suddenly. That indicates a clear cortisol issue.
I believe that it’s important to remember that when we take thyroid medication, it doesn’t just ‘top up’ levels. It totally replaces our endogenous hormones. This brings us to an interesting point about the way the thyroid ‘works’ when it’s healthy and no replacement hormones are taken. Output varies according to various extraneous factors such as weather, stress levels, health and much more. A fixed ‘dose’ of thyroid hormone doesn’t quite work in the same way. We’re ‘stuck’ with the dose we’re putting into our bodies.
As an example, since my thyroid was removed, I am intolerant of temperature changes. Very warm / hot weather is anathema to me. I do slightly adjust my dose in hot weather but I’m not suggesting that this is necessary for many people.
There are so many things to take into consideration for thyroid health. That said, if we had to isolate just one contributing factor it would, in my opinion, be cortisol levels.
It’s a minefield Foggy and I wish you well on your thyroid journey. 🙂
BIg thank you for the good wishes Hidden and for this reply too.
I think Dr P suggests that we may need less medication when it's warmer which would back up your theory there.
For me everything happened much more quickly; I could tell I was over-medicated after 6 weeks or so on that dose, and the over-medicated symptoms cleared after about a week (but the chest pains not until I restarted the liquorice). Well, I'm assuming I was over-medicated... was it a new batch of NDT that was stronger/different? Or my own production was varying due to Hashimoto's? Or it was T3 pooling or other low cortisol symptoms? I need to switch to T4 only, or T4 and T3? Or... something else? You're so right about it being a minefield!!
My understanding is that the adrenals pick up the slack when the thyroid starts to fail - and that having Hashimoto's and erratic own thyroid hormone production will have put a certain strain on this internal support system.
I started adrenal supplements a good year before I started NDT as in my case I was post RAI thyroid ablation for Graves Disease, very unwell, and read that this toxic substance is also taken up, to a lesser extent, by other glands and organs in the body including the adrenals.
After a couple of months on the full adrenal supplement, not just adrenal cortex, I felt better and continue to take them and I've been on NDT and self medicating for around 5+ years.
Your results look as though you were taking a little too much NDT as your T3 is showing over range some 17 hours post last dose - as by then we would be looking for a T3 well in range and past it's peak at around the 10-12 hour mark.
Obviously having Hashimoto's throws a spanner in the works as your are liable to own daily erratic thyroid hormone production.
I presume my thyroid now totally burnt out in situ and with no thyroid function to speak of, so in some ways suppose I'm more easily managed.
Having looked back at your Adrenal Function test the two early morning readings are highlighted and presume this is what is bothering you - I'm sorry but I do not know in any detail how to interpret / implement change.
I can't see the point in stopping the NDT only to start again after a course of adrenal supplementation.
Are you splitting this dose of NDT ?
Did you monitor yourself daily AM and PM with blood pressure, pulse and body temperature and did you see any changes in any as you built up your dose of NDT ?
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels and I know now I need my ferritin at around 100 ; folate at around 20 : active B12 75++ ( serum B12 500 ++ ) and vitamin D at around 100.
Yes - I too have read Dr P and followed his advice :
I was very unwell at the time, and decided to first build up my adrenals and vitamins and minerals which took around 18 months - and remained on T4 monotherapy.
As I grew stronger, and better informed, mostly through this amazing forum I started requesting a TSH, T3 and T4 blood test through my surgery and a referral back to the hospital where all my treatment from diagnosis of Graves Disease to RAI thyroid ablation had happened in 2005.
It took around 18 months of O/P appointments etc and the end result was that I was refused any treatment options other than T4 monotherapy as my TSH was suppressed at 0,01 told I was over medicated and referred to as a conundrum by my doctor.
I then had no option but to ' jump ship ' as the NHS would have had me more unwell and that was around late 2017 and I settled on NDT in early 2018 and am much improved.
It´s always great to hear about success stories So glad you found something that is working for you. It´s just a shame we have to treat ourselves to get there...
Hello pennyannie and thanks for your reply and for sharing your experiences, it is a big help. Sorry to be slow to get back - it's not been a great week but I'm feeling a bit better now.
I did wonder if the high T3 might be because my hashi's thyroid had a sudden enthusiastic spell. It lasted a good week though, I think, during which time I reduced the dose (and pretty quickly I felt very very hypo again after the dose decrease). I wasn't sure how long a hashi's flare would last, if it would also send T4 high even if taking NDT and whether I would still be getting them at this late a stage in the proceedings.
My concern re: adrenals is that my symptoms match those of low cortisol and also Dr. Peatfield's description. He suggests stopping thyroid treating if it seems that the adrenals aren't coping as (forgive me if this is not a precise paraphrasing!) T3 is only absorbed well if there is adequare cortisol, if the adrenals are struggling to produce enough then what is available will be used and the T3 will start to pool, showing a false high reading. T3 and T4 need to drop before increasing the cortisol, and thyroid treating may need to be lower once the adrenals are supported because the T3 is better able to be used.
I split my dose taking 1 grain on waking at around 6, and 0.75 at around 3.
I monitored pulse and temperature although not quite as regularly as I should. Both went up a little - temp from av. 36.1ish to 36.5ish (now 36.3ish) and pulse from av 60ish to 66ish still 66ish but have always been very variable.
I have been supplementing vitamins following the last test. I posted my results at the time and the consensus was that the folate may have dropped because I stopped taking my Basic B's before the test (due to the biotin), I now have folate to take in the run up to the test. But I will take another full test in a couple of weeks (I have a follow up GP appointment next month) and will also read around to see if there's anything else I need to do. Thanks for sharing your levels, I can see it would be a good thing to know where the sweet spot is.
I'm still amazed that such a tiny little pill can have such an effect, but also that it's not the whole answer - it really is a wholistic disease isn't it?
Hi Imaan thanks for your reply, hope you're doing well. I'm taking liquorice which helps a bit, (my potassium levels seem to be OK with it thankfully) and I've tried siberian ginseng which helped in some ways but made other things worse... may be worth investigating further though once my results are back. Thanks for the suggestion
Im glad to hear that your potassium is good with the amount of licorice you're taking. I'm not sure if you're aware but there is safer version called DGL( deglycyrrhizinated licorice) .
Hope your test results point you to the right direction..
Hi Imaaan, thanks for your reply. I've heard of DGL but my early information was that this is not effective for adrenal support (maybe it's still good for digestive issues) so I've stuck with the non-DGL. I wonder if it actually works for people who need to reduce their potassium? That's pure speculation though!!
Update: I tested cortisol and the results were low in range/under range all day (which was exactly how I was feeling)
Regenerus cortisol Aug '23
result min max my % through range
12 7 30 22%
2.4 2.1 14 3%
1.4 1.5 8 -2%
0.3 0.33 7 0%
I have started ACE: it sort of helps, but now read about CT3M and considering switching to that (I wish I had read about it before starting ACE!). Also looks like my iron is low (I think?) healthunlocked.com/thyroidu...
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