I spoke with the endo this evening who gave me his take. He thinks I have primary adrenal insufficiency, he believes this because my endogenous ACTH is suffice according to him.
He sees my Aldosterone & Cortisol are both lacking and stated this is why my thyroid medication won’t work - I am inclined to agree. He anticipated that I would have produced much more cortisol from an ACTH injection than 394, hence this new diagnosis.
Results:
Cortisol pre injection: 172 (140-690)
Cortisol post injection: 394 (140-690)
Renin: 26.3* (1.68-23.9)
ACTH: 21.1 (7.2-63.3)
Sodium: 137* (137-145)
Potassium: 4.5 (3.5-5.1)
(If aldosterone were an issue I’d have thought I’d have higher potassium?)
He has absolutely frightened the life out of me about steroids, even arguing that he can see I need them but doesn’t want to be the responsible physician for prescribing them because of the dangers of steroids… I would really, really appreciate some insight on steroids. I have read a lot about it but anyone with substantial, personal experience with steroids specifically would be very welcomed 🙏🏻
But you've just started taking HC yourself. What is the difference?
Renin is high. That has an inverse relationship with aldosterone.
'If aldosterone were an issue I’d have thought I’d have higher potassium?' This is my answer to another recent post. ...
'In theory potassium should raise if salt is low (and it might have for a time) but electrolytes become diluted when we continually drink excess water. I was told to stop drinking so much water but failed so was then told to drink a couple of electrolyte drinks a week and this helped. Now my adrenal reserve has ’normalised’ after several years optimising thyroid hormone replacement meds'.
yes… I have just started taking HC myself and now I am full of panic that I’ve bitten off more than can chew, he pretty much said I am at risk of death if he prescribes me HC and I run out etc. (I did not tell him I am self-sourcing, obviously)… but then again, are doctors attitudes towards steroids as bad as T3? Ie. Totally misinformed. If a doctor tried to scare me about T3 the way he did about steroids I would disregard it with ease. Steroids I feel less secure about…
I also understand from STTM that aldosterone needs to be addressed before Cortisol. (Btw I am not wedded to STTM but I cannot find other thyroid manuals that discuss Aldosterone).
'Btw I am not wedded to STTM but I cannot find other thyroid manuals that discuss Aldosterone' 🤣.
Just take an electrolytes drink a couple of times a week to replace. Its important to keep electrolytes balanced.
If you have primary AI you will need replacement forever and your endo can't deny you a treatment because he is sacred to prescribe it. Stupid man!
However, I'm not sure you do have primary AI on your results. I think you more likely to have the same as many others whose adrenal reserve has just run dry, and pituitary - adrenal - thyroid signalling is all skewed up!
That's not to say you don't need a little bit of HC (I'm sure I could have done with supports at some stage). You have read Dr Peatfields book and know how it works. He uses it to rest the adrenals and recommends tailing off HC after about 8 weeks (but can be continued mindfully if needed. I seem to remember greygoose saying she was on HC for two years and tapered off fine).
HC will allow thyroid hormones to work better, which allows CBG to reduce , leaving more cortisol free. Cortisol is also released from CBG as body temperature rises, and body temperature correlates positively with thyroid levels. So raising thyroid can naturally raise cortisol levels but we often can't do this until adequate cortisol is gained. Have you read Paul Robinsons book?
The scene goes on with things like RBC's working better when we are warm and suddenly anaemia reverses and plentiful other positivities. Just trying to placate you here, that you haven't necessarily done a bad thing in introducing HC, as long as you follow protocols.
This is nothing along the same thought patterns that your endo is thinking.
“However, I'm not sure you do have primary AI on your results.”
I am glad you said that Radd, because that’s what I think… I also don’t understand why, if he thinks I may have primary AI, he isn’t immediately ordering autoantibodies?
”I think you more likely to have the same as many others whose adrenal reserve has just run dry, and pituitary - adrenal - thyroid signalling is all skewed up!”
The thing that worries me deeply about my situation is that all my adrenal problems came about as a result of prolonged ketogenic diet. I had simple, undermedicated hypothyroidism befor that (but did not realise that was why I was so unwell). So I question whether I am the same as others, or if something particular has gone wrong for me. The endo reiterated to me how “complex” of a patient I am 😮💨 which all contributes to my worries.
“You have read Dr Peatfields book and know how it works.”
Yes, I understand that the feedback loop essentially is adrenal -> thyroid -> pituitary -> adrenal, and round and round like that, and that for it to be secondary, he’d need to believe the pituitary was somehow suboptimal. But I am confused about how he described as primary - it’s like he thinks I have an adrenal problem independent of my thyroid, and as it just so happens I also have a thyroid condition so that is being affected by the poor adrenal function… 🤦♀️ It’s not really stacking up to me.
He also said I need aldosterone support, so that’s another steroid to consider on top. But you mention electrolytes, if you have any links you can recommend I’d love to read them re. Aldosterone.
“Have you read Paul Robinsons book?”
I have read his book yes… however I will say I find his writing very, very confusing and unclear. To me it’s dense, repetitive and leaves questions that pop up unanswered. I have tried CT3M but not a lot of response, but then again, if my adrenal issue is primary CT3M is unlikely to help.
All of this could have been avoided if I hadn’t been brainwashed into believing in ketosis as the holy grail 😭 anyway, I am where I am.
I appreciate your reassurance no end re. HC. Radd 😮💨 I have booked in to see a different doctor who I know will prescribe me things but I am unsure how well he will manage me. I must wait until May 3rd for that appt. I don’t want to put myself on HC from now until then (that would be 5 weeks). Having said that, I’ve woken this morning at 6.30 with eyes bright and ready to get up, which is absolutely unheard of for me…
All your feedback is so welcomed and appreciated Radd x
I don’t actually know how serious low aldosterone (without elevated renin) is as my results were ignored many years ago. I wasn’t even offered a stim and hadn't gained any adrenal/thyroid issue knowledge at that stage. I eventually regained function when T3 was added to my Levo in 2015, and adrenal levels rose over several years. But I'm still thirsty and drink too much water 🤷♀️.
I think endo has come up with AI diagnosis after looking in a book 😁, because both secondary and tertiary are defined by deficiency in cortisol and DHEA but primary can be defined by deficiencies in cortisol, DHEA and aldosterone. Aldosterone is only affected (in the usual sense) when the adrenal gland undergoes destruction. The remaining tests assessing disturbances within the renin-angiotensin system concern when aldosterone is elevated.
In true hypoaldosteronism the aldosterone deficiency results in elevated renin and low sodium (hyponatremia) causes elevated potassium and acidosis (excess acid). There is no middle ground because if these axis are working right, elevations have to produce deficiencies.
However, you (we, many on the forum) only fit half the picture indicating a skewed signalling that they don't understand. There is no guidance on low aldosterone with normal renin, or low sodium with normal/low potassium. I also don’t believe your ketosis state was the total reason for your adrenal troubles but placed a huge demand on an already over burdened system resulting from years of under medicated hypothyroidism. And your endo obviously isn’t confident if he hasn’t arranged testing for adrenal antibodies or scans to investigate a possible tumour.
You have response to the ACTH injection which shows the adrenals are working, and either endo continues in his investigations into low ACTH (which would be secondary AI anyway) or he’ll back off as conventional medicine doesn’t recognise the full extent that adrenals can be compromised.
When functional medicine says tired, they don’t mean the cortisol has literally run out but hormones do become low and more importantly the HPA axis becomes heavily skewed through years of high demand. To check the entire axis including hypothalamus (tertiary) you would need ACTH and CRH stim test and perhaps an ITT (Insulin Tolerance Test) but they rarely do all this now, and even then unless results showed the full picture of AI and not adrenal insufficiency in functional sense, they wouldn’t accept there was a problem.
Good decision to stop the HC incase of further investigations with your new doctor. The conventional medication for 'true' mineralocorticoid deficiency is Florinef. The function medication for AI that is being nurtured into reverse is two electrolyte drinks a week, or just some extra salt.
Tania Smith of Thyroid Patients Canada lists all STTM’s shortcomings with her science backed research in the private FB page under headings Guides - No 6.
thank you for the information re. The FB group. I have been accepted but can’t find any files. I thought FB group files had been removed as a thing?
I have had extremely strange day on the HC - lethargic, hot, spaced out, fatigued, tinnitus, light sensitivity etc. hoping this might just be a part of uptake 🤷🏻
I agree with your take Radd, esp. re keto being straw that broke camel’s back. It seems criminal that I wasn’t just given T3 for all those years that I clearly needed it.
I’m going to operate under the assumption that this is not primary AI, and it’s just skewed signalling as you say. Thanks again!
He anticipated that I would have produced much more cortisol from an ACTH injection than 394, hence this new diagnosis.
But that is totally illogical. If the adrenals are capable of making more cortisol after the ACTH injection, then there's nothing wrong with the adrenals themselves, they just lack stimulus. Therefore, it's not Primary Adrenal Insufficiency. It Secondary. It's the pituitary that is under-performing.
I had adrenal fatigue - not a self-diagnosis, it was diagnosed by my hormone specialist in Paris who had it himself. I took HC for a couple of years - can't remember exactly how long - just taking one dose first thing in the morning, and one just before lunch - never after 1 pm. And, I was able to wean off it successfully. Can't remember all the details, it was some years ago, but it certainly didn't kill me! lol It made me feel wonderful! Lot of water under the bridge since then, and I don't feel so wonderful anymore. But, I don't think that has anything to do with my adrenals. Honestly, if I were you, I'd continue taking the low dose of HC in the morning, but drop the HC cream. The idea makes me feel uncomfortable, even though it is a feeble dose.
“If the adrenals are capable of making more cortisol after the ACTH injection, then there's nothing wrong with the adrenals themselves, they just lack stimulus.”
I had the exact same thought GG. I think he’d expected more from them than 394? But yes, if I am responding to the ACTH in any capacity, surely that’s not primary. What’s more is he isn’t testing autoantibodies… which surely would be the next step after thinking someone has primary AI?
That’s really so helpful to hear of your time on HC. Was it 10mg? Barry Peatfield says we need 20mg but this endo kept reiterating that he’d be putting me on a “tiny” dose and was overall just very reluctant to treat me. He is truly terrified by steroids… is this just another T3 problem? Doctors are frightened of hormone replacement that is actually not scary at all?
Did the HC help your hypothyroidism GG? I must say it’s making me feel strange so far, but it’s only Day 3 today so maybe things will improve…
Thanks so much for your thoughts on this GG, mind is swimming with so many ifs, buts, maybes. It’s so helpful to hash it out with others xx
I have always suspected that doctors that do the short synacthen test don't really understand what they're testing for, nor what the results indicate. So, I'm not surprised. We see this over and over again on here.
As I said before, it was a long time ago that I took HC. And I can't remember the numbers. (Also, I had a very high fever at one point which wiped out a good chunck of my memory.) But it was more that 20 mg, I'm sure. In fact, he gave me extra on my prescription so that I always had some in hand, should I need it. Just as long as I didn't take it after 1 pm.
Did it help with my hypothyroidism? I really couldn't say. Far too complicated to be able to say yes or no to that question. There were so many issues - low HGH for one thing. And I had an issue with T4, couldn't tolerate it. This doctor decided to put me onto Armour, but wanted to start the HC first. I had late-stage Ord's when I was diagnosed, thyroid the size of a lentil. So not much could help the hypo except the right dose of the right type of Thyroid Hormone Replacement. Armour was not the right type of THR! But, the HC did make me feel very good at first.
Doctors are terrified of all hormones. They just don't understand them. Even endos are terrified of them. I swear I've seen doctors almost cross themselves at the mention of DHEA - one endo had hysterics! It's really weird.
yes it’s so annoying, esp. as he said he’d test certain things and the. Didn’t test them 🙄
So ketosis puts a great burden on adrenals and it also lowers the conversion of T4 to T3 as it’s a hypometabolic state. But I don’t see why someone optimal couldn’t be happy in ketosis. It was very clear to me that ketosis had done big damage because after 18 months of it I crashed over night and developed symptoms I’ve now never been able to reverse. A saliva adrenal panel + these results do show my adrenals are very unhappy with the pressure I put them under.
the inventory of what has worked so far is very very small… I am interested now in circadian rhythm tho so that is a new Avenue to pursue as well as LDN x
We’ve been discussing circadian rhythms this evening with my exhausted vampire of a 19 year old that lives in a darkened room at Uni, we too may have had a breakthrough 🙈
Yes I do. My SST at diagnosis was base 15 then 30 at 30 minutes so very little response. . But it is still no bed of roses, even with hydrocortisone. Every day is unpredictable, sometimes from hour to hour. It also now appears that I have developed steroid induced diabetes. Your Endo is correct - steroids are dangerous drugs but for those of us who don’t produce cortisol, they are, literally, a life saver. Without them, i would rapidly go into a coma and probably die within a week. Whilst your results are not desperately low, they could be better. Personally, I would ask for a second opinion. Your Endo really doesn’t seem to understand adrenal insufficiency properly.
I appreciate your insights very much, thank you for sharing with me, that’s so valuable. Do you have addisons’s? I don’t know why my endo isn’t even bothered to test for antibodies but wants to diagnose me with PAI? At the moment I am taking 10mg HC in the mornings ( + HC cream to try to top up but it makes little difference. )
I am really sorry you have developed diabetes, I had no idea it would do that. If you don’t mind sharing what dose you take I would appreciate that. I’m in a real pickle trying to work out my next steps x
I could never advocate taking HC without a prescription but I do understand how desperate one can be when feeling so unwell. I take 22.5mg but updose when unwell and carry an emergency injection at all times. As I said previously, I would definitely seek a second opinion. Your Endo really doesn’t seem to understand much at all.
no, I understand that. But my life is not worth living as it is, and I’ve exhausted all other options. I have an appt. With a different doctor on May 6th. Thank you for helping me out with that info x
Good luck with that appointment. I really hope that you get some (correct!) answers from it and that you can get some treatment quickly and start to feel better. It’s demoralising when you feel so ill and can’t see yourself improving. I was fortunate (!!!) in that I went downhill very quickly in a matter of months and was able to see an Endo privately and she happens to be an Adrenal specialist. She saved my life and I can never forget that. There are other Addisons people on here who know a lot more so hopefully they will give you some more information. But your base number is low ish and although it rises, it, again, doesn’t rise to numbers that we would expect. If your ACTH were lower I would immediately say that you had SAI. There is a FB forum - UK Addison’s Disease & AI Info & Support Group - are you a member? Lots of people in the same boat looking for answers and lots of people who can help. Join if you aren’t already a member because they may have some of the answers that you are looking for.
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Can I ask for some advice on my test results?
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