I have realised I havnt been doing HC properly for almost five months. Which ofcourse feels very bad. I have been able to raise NDT though, together with supplementing Iron, progestoron, even if it goes slowly. I am now on 1.75 grains now. Wow!
I havn´t been taken my temps as recommended in the STTM book. I took 20 - 27 mg for 3 months and then I started to forget doses without feeling any discomfort. At that moment I was only on 1-1.5 grains and still had palps, felt dizzy, wheezy, muscle twitches...
I started to wean HC because of that...but on 7,5 mg and 1.5 grain NDT I started to get back slight anxiety and tiredness.
Some one on a yahoo group recommended me to go back to 20 mg HC and take temps. I did and temps are as follow
15 May 36,9
16 May 36,9
17 May 36,8
18 May 36,6
19 May 36,6
20 May 36,7
21 May 36,9
I dont now if it is really bad, but guess I have to continue on HC. Do I have to raise HC? Not sure what to do next.
I really worries me to take HC for this long time and are concidering CT3M, but just cant imagine waking up at 5 every morning prepared with pills and water....just not ready for it!
Big symptoms now is fatigue and muscle twitches wich makes me wonder if I am low in Aldosterone.
I would apreaciate coments from anyone who have gone through HC supplementing!
I know what you mean about HC. I have resisted going on it and have been on Nutri adrenal now for about 2mts. Cant say it is doing anything for me but HC is a bit scary. I dont think that your temp is too bad. Cant remember exactly what STTM says but isnt it over 0.3 degrees fluctuation which is an indication to treat?
Well, I am on HC and I don't find it scary at all. As long as you don't take it after mid-day, it's OK. Dr D told me to take 20 mcg first thing in the morning and 20 at lunchtime, and to increase if I had any extra stress or a cold or whatever. But I didn't feel happy taking it at lunchtime, so I took it all in the morning.
This was a few years ago, and I suffered from very swollen legs. Someone told me it was the HC causing that, so I thought, well... I'm feeling so much better, I don't think I need it anymore! So I weened myself off it. And I was fine for ages. Then, life got difficult, as life tends to do, a lot of viruses, a lot of family tension - my ex took me to court and a lot of fun things like that! And I started to go rapidly downhill again. Lots of symptoms coming back, the weight piling on again, etc. I floundered around for a while, not quite knowing what to do, then decided to try HC again.
I'm still on it now, been on it for perhaps about a year? Not quite sure. And there have been some ups and downs - don't think any of it was to do with the HC though. But this week, I feel as if I've made a breakthrough! I feel good! Still have reduced muscle tone, still tire much more easily than I should do. But the leg-swelling is going down, I'm losing weight and my sleep is sooooooo much better. I used to have to get up about three or four times a night to go to the loo. For the last two weeks I've slept through the night most nights. It's brilliant!
So, I shall stay on it for the timebeing, but if I start to feel a bit hyper, I'll start to reduce it gradually. But it does take time, there's no instant cure. Hormones aren't aspirins! lol 5 months isn't that long. Are you self-treating or did a doctor put you on HC?
I am doing CT3M and it really is OK. I dreaded it beforehand, but I wake naturally at that time and just crunch it up without water - having left out correct amount the night before. Then I sometimes go back to sleep or just doze. CT3M has really worked very well for me - before starting it I was unable to raise above 1.25 grains but am now on 3 grains and the increases aren't too much of a problem any more xx
So, Greygoose, do take any Tyroid meds along with HC? Do you still take HC all in the morning. What I learnt fron STTM you should tak it speread out over the day to mimic how the adrenal glands are working.
I am sad to here you crashed again after all these life events...nice to hear you are back on track now tho.
Yes, as I said, I'm still taking HC. And T3. I take my T3 all at once before I go to sleep and I take the HC all at once when I get up.
I really do worry about some of the advice given on STTM - only I can't say so because people get so mad, as if it's a religion or something! Taking HC spread out over the day risks shutting down the adrenals permenantly. Whilst adrenals are good at springing back into action after a little rest, if they stop working, they don't start again. Which is why I said not to take it after midday, if you noticed. Well, maybe they know something I don't, but that's what I was taught and I've found back-up for that idea in other places.
Hugs, Grey
Thanks Clarebear, I have followed your blog in times when it all feel very difficult. Your case seems to be very similar to mine but I had all four cortisol saliva tests under range. I am now so unsure what to do about the HC - continue and maybe have to add Florinef (Are hopefully getting it tested beg of June). But another scary medicine to take then ,and therefore I am looking at the T3CM. I read all hormones gets back on track with CT3M. But I also feel it is a bit like start all over again.
Do you now Clarebear if one has to do CT3M the rest of your life or could it be you can move your first dose to wake up time once your adrenals are healed?
That is a very good question and one I'm not yet sure of the anwer to. I am hoping that now that I managed to raise my NDT higher that in fact the CT3M is not so important, however, I am not brave enough yet to try stopping it I am feeling pretty good at the moment and can't bear the thought of slipping back to where I was, although maybe I wouldn't... xx
So good to hear you are feeling better and I do look forward to be there one day too.
I am wondering i it feels like you could bare to stay with CT3M the rest of your life if you needed to? Sorry to ask but just trying to find the right answers that could make me decide to go for it. ...
Yes I could easily stay with it for the rest of my life, if it is the difference between feeling awful and feeling fine. When I first started, I used to set my alarm to go off at 5am, but now I don't bother and just take it whenever I wake up - which is ususally within 30 mins of 5am. The timing doesn't seem to need to be so strict now xx
I take 20mg daily, but split into 3 morning until late afternoon... taking 10, 5, 5 (in the past I have done 10,5,2.5,2.5) plus I use a steroid nasal spray which adds a little to the total glucocorticoid that I am ingesting, hence I don't usually go over the 20mg total of HC unless ill, although other people do take a good bit more, and many less.
Generally I have found for me, 20mg (plus topical nasal spray) is enough.
Taking it all at once is not a good idea to me, and sounds more like it would be likely to suppress remaining Adrenal output! The whole is is to copy something like the natural body output f cortisol which is higher in the early morning and tapers off over the day.
Self treating is all well and good, but you need to go the whole hog and not just do it casually - it is saying to me you haven't researched the thing enough in the first place, and I can only suggest doing a lot of reading.
Not everyone with low adrenal output has low Aldosterone, and Muscle twitching makes me think possible low Magnesium whihc is common enough (or even other electrolytes such as potassium, but don't just blindly supplement that!) to me, and I would suggest looking into that, see Dr Myhills web site for some info on testing and supplementing.
Quite the opposite, Picton. If you take it in dribs and drabs, when do the adrenals get to do any work? The idea is to give them a bit of help in the morning when they have to do their hardest work, and when that's over, to let them get on with it. If they stop working they shut down, and you're not giving them any work to do. They need resting not taking over.
I think I have probably done a lot more research than you, if that remark was addressed to me. How many hormonal lectures by a top specialist have you attended? Who taught you about adrenals?
It wasn't specifically addressed to you, but, if that's what you believe, who am I to suggest you do otherwise.
Personally, I don't want to work my adrenal glands, they don't seem to be doing so well, and I want to ease their work without shutting them down.
I won't be changing my practice.
For those wanting a brief resume of a protocol to use, (there are plenty of more technical papers too for those wanting to look), the commonest quoted general non-technical advice I have seen is stopthethyroidmadness.com/a... and it doesn't take much reading.
Plenty suggest very much lower doses overall too, but what you suggest is not a protocol I have heard of either for Adrenal fatigue (and it's many varied names/descriptions) or for Addison's disease either (Plenty of NHS info out there with information on protocols used to treat Addison's sufferers for example).
As a general principle, I also don't listen much to "Top specialists."
I find they are too interested in their "Top Salaries" and what "Top funding" their department or Faculty is getting from drug companies for research, or their own personal interests. Certainly the last Endo in this category that I saw was the total embodiment of this approach, but he is not alone in this. Getting me well wasn't high on his list of "Top priorities" in fact it wasn't even his last priority.
I am in the state I am in because of "Top specialists" misdiagnosing me many times over my lifetime. I have never been short of referrals to "Top specialists" but I am still waiting for some results. The pages of this site are full of plenty of others in that position, especially so in respect of thyroid issues so I suspect I am not alone there!
What I AM interested in listening to is Doctors and other scientists that GET PEOPLE WELL, and in this country especially in the field of Endocrinology, unfortunately they are as rare as Dodo feather pillows.
Now a small number of Doctors in the US have a rather better track record in this respect, and that's what I listen to more attentively.
Dr. William McK Jefferies seems to be the guy who most who have achieved good practical results there have listened to, so that's what I base my actions on until I find better options.
Yes, I realise now that you weren't addressing me and I apologise for my tone, but as you were talking about people self-treating and taking HC all in one go, AND I was already riled up by what I considered a rather aggressive post asking me stuff I'd already explained, I took it wrongly. Please excuse my hot temper!
But having said that, I stand by the protocol I discribed. And it works for me. If yours works for you, all well and good. And I understand your attitude to so-called 'top specialists' but we're not talking about the same people. No matter. You must do what you must do and I must do what I must do.
I was a bit short too, probably because this is the sort of situation we have all been left in by Doctors who may be able to keep us alive, but in a very degraded state only and without any knowledge how to fine tune and manage hormones beyond that crude level - and it is a bit of a raw nerve when we are left to muddle on and do it ourselves!
I am in a slightly less usual position, in that I believe my adrenal output is low because of the long term use of Opiate painkillers (a well known, but rarely treated effect that is having similar effects on various other pituitary hormones too eg. LH FSH TSH Testosterone etc.), therefore it might well be a case of the pituitary "signalling" to my adrenal glands being reduced, rather than any type of primary pathology in the adrenal glands themselves making them work less well; so regardless of how much my body is calling for more adrenal production, the message may either not get through well or fast enough, and for this reason it strikes me to be even more cautious than if the opposite was true, as even if my adrenals are up to the job, then they might well not switch in any more than they already do!
That said, I must admit though, in my situation or where there is a primary adrenal problem your protocol (other than when "stress dosing" for illness etc, where tapering off again would be usual afterwards) would still make me very uneasy dosing above 10mg *per dose* on a regular basis, even though I would be relatively comfortable to go to a total of say about 35mg or perhaps even 45mg per day total if really necessary as I really haven't read of any studies that use such large SINGLE doses in that way, meaning it is somewhat unknown territory, unless you are aware of any specific studies that have used this approach without suppression occurring?
I was put on that dose by Dr D in Paris. He is one of Europes, leading anti-aging doctors, trained by Dr Hertogh of Brussels. He, like Dr Hertogh, lectures all over the world on hormones and has written books. He also does some research. What makes him so special is that he has Hashi's himself, as does Dr Hertogh. He is not the sort of doctor that just dishes out orders from on high, he discusses and explains and loves informed patients and, yes, actually encourages his patients to research their disease on internet. I feel priviledged to have seen him.
I used this method some years ago, and then successfully came off HC and my adrenals were in no way suppressed. That is the clue, isn't it. What happens when you come off the HC. I lived quite normally, doing well until the events described above when I just crashed big-time and have struggled ever since.
I cannot understand why you think that taking the dose all in one go would cause the adrenals to fail. It gives them a rest during the busiest part of their day and then they go back to working normally afterwards. It's the rest that is important in restoring them to health. It just seems logical to me. If you take the HC throughout the day, they don't have any work to do. That's when they would shut down. But i haven't tried your method, so I can't really comment. I'll just continue with the protocol given to me by someone I trust, who has many patients restored to health to his credit.
I am familiar with Hertoghe, although to be fair he does quite a few things different to anyone else anywhere else.
Taking much more in one dose won't make anything "fail," and on rare occasions due to stress and illness I have taken more myself, but it is wise to wean off after as the problem is suppression, which is the usual problem with glucocorticoids in anything over "physiologic" doses, and I simply haven't seen anything to suggest individual doses over 10mg is not potentially suppressive. (or at the very least close to it!) there is a lot of experience with dosages of up to 10mg per dose, and even up to about 35 of 40mg per day without significant suppression, and a lot of info where bigger doses DOES cause suppression, but not much in-between, which would make me very unhappy at such a level, if good results could be got at lower doses, with a long used tried and tested protocol.
Sounds really easy Clarebear... Do you now if that is quite a common way to do it? I mean the time when it is taken, if it is not that impotent after a while. What if you sleep over one day?
Picton, fir how long have you been on HC now. Are you on NDT as well? Have you found your optimal dose? Have you ever tried to wean off?
I seriously thinking of switching to T3CM, it would be so nice not to have to multidose 4 times a day, it will be so much cheaper as well not to have to import the hc from the states.
I may be lucky, my GP is investigating if he can prescribe me Erfa Thyroid. That would be so good. I am so happy he offered to give it a try , he did not have a clue hiw to do it though ??
in reply to
I have taken HC for pushing on to 3 years now. (as I mentioned I use Opiate painkillers, and they have had a *very* hard effect on me, meaning many of my pituitary & adrenal hormones are low, and getting treatment for this has been a challenge to say the least, and I really only get Testosterone prescribed, although in some ways the low cortisol has been the most dramatic, what with the hypoglycaemia!
As far as Thyroid was concerned first I tried to simply reduce Reverse T3, using T3 only (my TSH was not very high despite the symptoms but I now realise that it is suppressed in the same way that other Pituitary Hormones are!), so when the hypo symptoms returned quickly after clearing that I have self treated with NDT for a couple of years, and apart from one period (mentioned below) I have managed it very well based on response to symptoms only.
The only occasion when I weaned off HC, late last year (when I had what appears to have been a viral thyroiditis which made me very hyper, swollen lymph nodes and unable to lift my head without discomfort!) and so I also weaned off the NDT too, (back on exactly the same dose now with no hyper symptoms whatsoever) and the hypoglycaemia occasionally returned during that period. When I do take it, I have zero hypoglycaemia, so it looks like I am stuck with the HC forever, although that is not necessarily the case with everyone. One reason I haven't tried T3CM - I am probably not the typical situation!
Sorry about all the misspellings, i am on my phone.
Thanks Picton for your answer. I am sorry to hear you are stuck on HC forever - that is my worst scenario. Anyway It´s good you are feeling so much better on it.
I don´t really now what is the typical situation for trying T3CM...I need to investigate more.
Have a good weekend.
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xx
I am feeling pretty good at the moment and can't bear the thought of slipping back to where I was, although maybe I wouldn't... xx
Anyone supplementing NDT with T3?
Help with HC please.
Start HC and surgery
Still can't tolerate thyroid medication, housebound 26 F, very hypo and hypo adrenals, on HC 25mg
Very High Cortisol, what should I do?
