Recently I was diagnosed with adrenal insufficiency, so I’ve been spending a lot of time canvassing lots of different addisons & adrenal insufficiency forums and communities to get a gauge of what people think of my test results…
I’ve made a slightly shocking revelation during this time - There is a *massive amount* (and I mean massive!) amount of people in these adrenal insufficiency forums with secondary adrenal insufficiency who are also on levothyroxine… I do not want to make any sweeping statements and I appreciate that maybe only a small percentage of those with SAI & thyroid disease fit this theory, but I cannot help but *seriously* wonder if these people, who are now living a life on steroids simply need some T3 in their treatment to get the pituitary going? Most of them are absolutely none the wiser that T3 even exists!
We all know already that thyroid disease can be involved in (but is not the exclusive cause) conditions such as chronic pain, chronic fatigue, elevated cholesterol, infertility, treatment-resistant mental health issues, chronic infections etc. but to be sentenced to a life of steroids because of this bonkers treatment of thyroid disease is horrifying…
Just wanted to share that finding. We must do something to change this thyroid treatment, surely enough is enough?!
Does taking T3 get the pituitary going? I've never heard that before. There are all sorts of reasons why the pituitary isn't functioning correctly, I would imagine.
Perhaps I have this wrong but my understanding is that pituitary runs almost exclusively off T3/relies heavily on thyroid hormone for function (Paul Robinson writes about this) hence why ACTH can become low, causing SAI in those with thyroid disease.
From Paul Robinson:
“However, studies show that the pituitary gland needs more T3 than any other organ in the body. The pituitary basically runs using T3 as its fuel. This makes the pituitary vulnerable to not working well if T3 is low.”
OK, I don't know. But, I have never heard of anyone's Secondary Hypo being 'cured' by taking T3. Is there any research into this? helvella ? diogenes ?
I’ve seen examples on this forum of people with very low ACTH and low cortisol, but passing a SST, indicating secondary. After adding T3 their adrenal function recovers.
In a world where people don’t understand optimising thyroid medication they end up in forums like adrenal insufficiency/Addisons disease and never get sufficient T3 into their treatment, because they’re told their thyroid labs are normal (when we all know that they’re not). They don’t have doctors that ever make the connection 😞 I just wonder how many would actually be able to get off their steroids if they optimised their thyroid medication.
Well, obviously being low on T3 will affect the adrenals. But, I've never seen any indication that the pituitary was involved in the way you describe. We've obviously not read the same posts.
I'm afraid I don't know anything about Paul Robinson, either! lol I've never read any of his stuff. But, as I see it, it could be that some cases of pituitary malfunction might be due to low T3, as the pituitary does need T3, the same as every other cell in the body. Although, I can't really see how that would work. But, certainly not all cases. If, for example, the pituitary is malfunctioning due to a bang on the head, I really don't think that just giving it more T3 is going to make it work correctly again. That sounds to me like the myth that taking iodine is going to restore a diseased thyroid to full working condition.
But I'm certainly not, by any means, saying that people don't need T3. It would be great if we could all be started on T3 on diagnosis. I'm all for it.
Yes, I’d imagine it’s only a small percentage of those on T4 only with SAI, but my god there are so so so many people in the AI forums on steroids + levo… it just makes me really wonder.
No, that's not what I meant. But now you've got me totally confused and I don't know what I meant anymore. 🤣🤣🤣
I wasn't talking about how many people taking T4 also had SAI. I was talking about causes of pituitary malfunction. And, the questions is more: how many people with hypothyroidism, taking T3 and T4 - or T3 only - also have SAI. And, has taking T3 improved their output of ATCH?
I saw a lady on this forum just the other day say her cortisol went from something around 46 to 450 just by adding T3 to her treatment. We cannot know for absolute certain this was because ACTH improved, but it sure doesn’t look like it was originally primary 🤷🏻
Hi. I had under range cortisol when I felt particularly bad - 69 (155-650). My problem was that my T3 was very low 3.9( 3.7-6.0). My T4 was at the top of the range. My TSH was high over range. I’m a poor converter and a positive DIO2 gene test. I had done x2 short synacthen tests to check my adrenals. Both results were negative. No adrenal issues. My ACTH was low but not under range. After being advised to go private only on here I was quickly diagnosed and given liothyronine T3 combined with liquid levothyroxine T4. I felt much better almost immediately. Previously I could barely walk. Now with T3 added there was no stopping me. I could walk with vigour. I got my bloods done about 6 weeks later. My cortisol shot up from 69 to 450 (155-650)!! And now it’s steady at about 275. I get it checked every 3 months along with TSH, T3 and T4 plus vitamins. Now all is good and in range. Most importantly I feel ‘normal’ and energetic. My GP was very surprised my cortisol recovered so well after adding the T3. I don’t know why but I do know it felt nothing short of a miracle.
Forgot to mention that the hospital Endo prescribed hydrocortisone for me that didn’t help at all instead of giving me energy it made me go to sleep it was just like a sedative
Cortisol prior and after starting T3 combined treatment
thanks for sharing that McPammy sorry to so rudely call you out! It really does speak volumes that the doctors were so surprised that your adrenal output improved so much from the addition of T3… how they cannot see that it helps to “mend” the HPA axis is beyond me… I am very glad you are well x
But, McPammy 's story does not confirm that taking T3 cures pituitary malfunction. It improves adrenal function, yes. But, by the sound of it McPammy didn't have SAI because her pituitary appeared to be functioning normally, from what I can gather. Although without a lot of numbers, one can't say anything positively.
I don’t think I ever said that T3 would cure anything, only that it appears to improve SAI in some people.
But more to the point GG, that’s precisely what I am saying! These people in these forums have been diagnosed with SAI, not knowing that they probably just need T3 to increase ACTH output to stimulate adrenals appropriately.
They are given a passed SST test, lowish ACTH (some are below range, some not) and below range morning cortisol and then placed on steroids, calling it SAI. The particular people in this scenario who are also on levothyroxine only (or maybe haven’t even been diagnosed with thyroid disease, who knows?) may be unknowingly living on steroids thanks to low morning cortisol due to being poorly medicated on thyroid meds. I’ve since found out that Peatfield & Skinner actually argued this was likely very often the case for SAI so turns out my observation is not remotely original 🫠
No, I should have put 'cure' in inverted commas. This has all got so twisted that I don't who has said what anymore.
You said that some people on levo and steroids should be taking T3 rather than steroids, right? Because the reason their adrenals aren't working properly is because they aren't getting the correct amount of stimulation, right? They need T3 to 'get the pituitary going'. But, if the pituitary was malfunctioning, it wouldn't be producing the right amount of TSH, either. So, it's rather doubtful that these people would even get a diagnosis in the first place. And, as far as I know, no-one has ever said that taking T3 has improved their level of TSH - but they wouldn't even know if it had because it would be suppressed due to the T3. So, to find out their true TSH level, they would have to stop all thyroid hormones. Which means they would be back where they started and none the wiser.
But, I think I'm going to drop the whole thing, now, because it's just getting too complicated and there seems to be no proof either way.
Yes that’s how I’ve seen it, and I’ve thought a lot about the TSH signal vs. ACTH signal, but I don’t think we know that a pituitary can automatically send all 9 signals well? Just because they come from the same gland it doesn’t mean they all respond to the same stimulus/are on the same feedback loop? It’s also feasible if we follow Paul Robinson’s line of thinking that a pituitary can initially be healthy and secrete Eg. TSH well enough for thyroid diagnosis but after sustained time on suboptimal treatment (T4 only) their pituitary may begin to go “wonky” and send a poor signal over time - hence why adrenal issues often result from untreated hypothyroidism. For many people theyy have their ACTH in range (like McPammy) but it’s low. Lots of people have their TSH above range but only marginally.
In any case yes, perhaps we can put it to bed and agree to remain skeptical x
I don't think we know anything much at all. There are so many ifs and buts and possibilities. The trouble is, we're dealing with doctors who think they know it all when they don't even know what T3 is!
I really don't know. But, she said her TSH was high. I know you can have central hypo with just TSH low, but other pituitary hormones normal, but I suspect that is more likely to be a fault with the hypothalamus, which rarely gets tested. Could it be the same thing for ATCH? I just don't know.
Yes, I haven’t a pituitary problem. I had an MRI to check it and all was functioning as it should the Dr advised. I’m unsure why my cortisol was so low during that period. I had a couple of Addisons tests and my adrenals were fine. T3 was the answer in my case. But it may not be the answer for others. I think that just about every aspect of my body was running so low and I felt near to collapse daily due to low T3. I just needed the correct amount of T3 to kick start my system and keep it running properly. It certainly did and remains so.
It's well-known that un/under-treated will negatively affect the adrenals. And that when you raise the T3 the cortisol will rise - as you say, not in everybody, but very often. So, really, as spectacular as your story is, it has nothing to do with what we were talking about: i.e. reversing secondary adrenal insufficiency. That point seems to have got lost in most of the responses on here.
The manage to make more for a while, but they can't keep it up forever. And, they start having trouble making their morning quota - which is the highest level of the day. That's why we call it Adrenal Fatigue because the adrenals behave as if they are fatigued. Whether or not they really are, I don't know, but give them a bit of a rest - such as taking HC in the early morning, and they seem to rally and be able to cope again. Taking T3 sometimes has the same effect. Not always, but sometimes.
But HC in the morning replaces them, so they’re making nothing, and not rallying? It sounds like you are saying that T3/thyroid hormone can “reverse” primary adrenal insufficiency?
As I said, taking HC in the morning - which is the adrenals busiest time - gives them a rest by replacing them. And, that's why you shouldn't take it after 1 pm if you wish to one day wean off it, because they adrenals then have to work for themselves for the rest of the day. The thinking is that making cortisol in the afternoon and evening is less arduous for them than making it in the morning, so they have the morning off, so to speak. And it works. I'm the living proof of that. The problem is, as doctors don't believe in Adrenal Fatigue, they don't know how to treat it. They believe that one should take HC all day to mimic the natural action of the adrenals. The adrenals then shut down completely, and - unlike the thyroid - once they have shut down they cannot come back to life.
That's the difference between Adrenal Fatigue and Adrenal Insufficiency. A distinction that not everybody makes. With true Adrenal Insufficiency, whether primary or secondary, you need to take HC throughout the day because the adrenals can no-longer make enough themselves.
This is what I was taught by a hormone specialist who explained it to me in great detail. But, he was of the opinion that you should sort out the adrenals before adding T3 to the levo - or, in his case, changing from levo mono-therapy to NDT. Other specialists believe that adding T3 will do the trick just as well. And, in some cases it will. Perhaps it depends on how low your cortisol is. Mine was right rock-bottom of the range, which is why he put me on HC.
I was asked to comment on my personal situation by another member. Shame no Doctor knew it’s a well-known fact. All I know is the facts and experience I went through.
no need for any sorry’s. Truly. 👍😀. I’m more than willing to share my experiences in the hope that I may just help one person at least with this terrible chronic illness we live with. Without this brilliant forum and all the well informed members I just don’t know what would have happened to me. I just want to share and try and help.
I had under range cortisol when I felt particularly bad - 69 (155-650). My problem was that my T3 was very low 3.9( 3.7-6.0). My T4 was at the top of the range. My TSH was high over range. I’m a poor converter and a positive DIO2 gene test. I had done x2 short synacthen tests to check my adrenals. Both results were negative. No adrenal issues. My ACTH was low but not under range.
Apologies for intruding, but can I just expand on your explanation a bit.
Your blood cortisol was at good levels and you passed the SST tests you were given, which is why you didn't get an AI diagnosis. But your saliva cortisol was hugely under the range. Since the NHS dismisses saliva cortisol tests (except for testing cortisol at midnight when a patient is suspected of having some form of Cushing's) they don't usually "believe in" saliva cortisol results as being anything important.
The blood test for cortisol and the saliva test for cortisol don't measure the same thing.
Blood Cortisol is Total Cortisol. The cortisol is attached to transport proteins which carry cortisol around the body / bloodstream. The main transport protein for cortisol is Transcortin which carries around 90% of the body's cortisol. The remaining 10% is carried around by albumin. Note, albumin also carries around thyroid hormones as well as some other hormones.
Saliva Cortisol is Free Cortisol. In other words it is cortisol which has been detached from its transport proteins.
Just as Free T3 is the only T3 that can get into the cells to allow the T3 to do its job, it is only the Free Cortisol which can get into the cells and do its job.
What I have never found is an explanation for how some Total Cortisol is stripped of its transport proteins to become Free Cortisol. Obviously, thanks to @McPammy's experience, I know that one of the ingredients for making this happen is T3. But beyond that, I don't know anything more.
Greygoose, I would highly recommend reading Paul Robinson's books, since you are on a thyroid forum and offering advice. Even if you don't end up agreeing with his approach, it would be very useful to be aware of. Amongst those of us using T3, especially those using T3 only, his books are virtually our "bibles". Certainly our starting points anyway.
I only offer advice on things I'm pretty sure of, going by my own experience. I don't pretend to know everything. And I don't try and answer every question. I too am on T3 only, and Paul Robinson's book certainly isn't my bible. And I certainly wouldn't try and advise any one who follows PR's method, not even if I read his book, because I wouldn't have first-hand experience.
However, studies show that the pituitary gland needs more T3 than any other organ in the body. The pituitary basically runs using T3 as its fuel. This makes the pituitary vulnerable to not working well if T3 is low.”
I would agree with this
Patients who test positive for Dio2 gene variation are particularly susceptible to heart, brain and pituitary not working correctly without the addition of T3 prescribed alongside levothyroxine
By following Paul Robinson's CT3M theory, which basically involves taking a T3 dose in the night several hours before waking, I have managed to improve my low morning cortisol level (it matters how much T3 you take and when you take it, and is individual to each person). The idea is that T3 will eventually fix my low cortisol levels throughout the day, given time and optimal T3 dosing.
Paul Robinson is a patient advocate of T3 who has written 3 books on treating hypothyroidism, based on how he regained his health. He worked with Dr John C Lowe, a former medical adviser to ThyroidUK until Dr Lowe's death.
Two of Paul Robinson's books are on using T3. (If you want to find him on Google you'll have to search on 'Paul Robinson thyroid' as otherwise you'll get a footballer).
The name CT3M is an amalgamation of the words T3 and circadian rhythm.
The pituitary, hypothalamus, adrenal axis work together, so it is no surprise to me that if one bit isn't functioning, it will impair the other remaining parts of the HPA axis.
The only part of Paul’s method that bothers me is that many people find they cannot tolerate T3 in the first place, often (but not always) because of poor cortisol levels, but his method means using T3, which many can’t actually tolerate so it can be a catch 22 for some. For others I know it does work well and I am so glad you have managed to recover your adrenal function using his method 🙂
I had low cortisol at all 4 points of the day. I used a bovine desiccated thyroid prior to switching to T3 only, and I increased that a little every couple of weeks. Then when I switched to T3 only I started at a low dose and increased it slowly.
It sounds planned, but it involved some luck. I became allergic to all levothyroxines. So I needed something else quickly. I tried a private endocrinologist and porcine NDT. Fingers swelled up on a tiny dose of half a grain. I swapped porcine NDT to one with minimal fillers. Same effect. I now know I'm intolerant to pork. So I switched to Thyro-Gold bovine NDT as it had the fewest fillers. I was on that for 5 years and was much improved but still had symptoms. Then I heard about T3. I went to see an endocrinologist who does both private and NHS. Got an NHS appointment, then went to see him privately 2 days before. At the private appointment, I got to see him for an hour and gave him information: a table of blood tests going back decades, together with (conversion ratio), dose. Where I'd got fT4 and fT3 readings, I calculated my conversion ratio (fT3÷fT4). Very poor. 0.16-0.20 depending on my gut health (i.e. how well I was sticking to my restricted diet, that didn't cause symptoms). I used Midgley et al's research 'variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency' to support my argument I needed T3.
I read Paul Robinson book, 'the thyroid Patients manual' that explains how everything is connected, the HPA axis, cortisol, etc. Then I could talk knowledgeable.
So although I say it was luck, there was a lot of research and work behind the scenes and help from others. I was told about Thyro-Gold from a forum. I got the name of the endo from thyroiduk and friends. I also over a period of about 2 decades must have seen about a dozen endocrinologists, some who were as useful as a chocolate teapot, including one of the top one's in the UK (rated by prestige not ability).
Yes, I still take a little Thyro-Gold, 75mg. I split a 300mg capsule into 4. Endo can't condone it, but advocates that it is best to have some T4 if you can tolerate it, to act as a reservoir from which to get extra T3 if needed. He would prefer to prescribe 'levothyroxine + T3', but can't as I'm allergic to levothyroxine. Although I'm a poor converter of T4 to T3, I do convert some. I take the Thyro-Gold with 15mcg T3 as my first dose in the morning, then wait an hour before eating. I think it would also help to add another 75mg Thyro-Gold in the evening, the logistics need to be right. I can't do it for the next 2 months as my body will be transitioning from my winter to my summer thyroid hormone requirement. Then when I have a stable baseline of FT3 and FT4 results I can try adding it then.
Would love to know how much you take during the winter and the summer??? Do you drop down right away or slowly reduce? What month do you start for your summer dose?
I usually need 5mcg less T3 April to Sept. I have a blood test at beginning of April, then monitor how I feel by heart rate, plus temperature if I feel the need. I keep meaning to try Paul Robinson's suggested methods of temperature and blood pressure, but I'm not very good at remembering. Luckily, to date, heart rate has been enough. Over the years I've found I need to have fT3 at about 5.2-5 4 (Range 2.5-6.0) tested 12.5 hours after last T3 dose.
I completely agree with you. I also have burned out my adrenals before and during thyroid treatment. When I was on levothyroxine my anxiety went through the roof. Now added T3 and feeling a lot better. But, I still have periods where I get burned out. So T3 is not the magic solution to adrenal fatigue with hypothyroidism, for me.
I find it amazing that doctors don't measure the ACTH. After all, the organ with a problem in Primary AI is the adrenal glands, in Secondary it is the pituitary, and in tertiary it is the hypothalamus. If someone has Secondary AI then doctors checking the health of the adrenal glands with ultrasound or CT scan or MRI is wasting their time. They need to look at the pituitary.
Medical attitudes to Secondary and Tertiary AI are often the same as their attitudes to Secondary and Tertiary Hypothyroidism - they think it is so rare that it isn't worth testing for.
The other thing I have often wondered... If a problem is found with the pituitary (for example), shouldn't doctors test all of the hormones that it produces rather than just the one that caught their attention and made them check in the first place? According to this link
I do not understand how clever - in fact, you don’t even need to be particularly clever you just need some common sense - people do not realise these very basic, logical ways of thinking things through. These AI/addisons forums are bursting with people on levo, with no ACTH results, just a passed SST and very low morning cortisol.
I guess it’s all about their symptom management philosophy (ie. Money) that they use on everything, just plug the gap where they can and move on. Daren’t actually think it all through and look at the whole picture 🤦♀️
Thanks for those resources HB, I enjoyed reading through all those pituitary hormones!
Another common problem with adrenals is that doctors pour scorn on adrenal fatigue and think it is pseudoscience and only "believe in" adrenal insufficiency.
I understand that people with primary adrenal insufficiency can't produce enough cortisol, often as a result of autoimmune destruction of the adrenal glands. But suppose a 9am blood test in a patient produces a cortisol result of (made up numbers) 160 with a range of (150 - 600).
That result is so low that I suspect the patient could have either adrenal fatigue or adrenal insufficiency, and certainly needs to be tested for AI. Suppose the patient passes the SST. What then? Leave the patient to rot? That seems to be the usual outcome.
And what if the result is 200 or 250? Mid range is 375, and at 9am, if the doctor pays attention to the circadian rhythm for cortisol, the result should be much nearer to 600. But current medical practice would tell the doctor that anything in range is absolutely fine and the patient is physically healthy but mentally ill if they persist in saying they are unwell, so give them an anti-depressant.
I'll come out now and say I do believe in adrenal fatigue, but think the problem may be caused by low nutrients and low thyroid hormones.
Whereas adrenal insufficiency isn't recoverable, I think adrenal fatigue is recoverable and the glands could be returned to good health with the right treatment of nutrients and thyroid hormones.
I believe my results are the epitome of adrenal fatigue if ever we could find a doctor to not cry out in anguish at the mention of the phrase. greygoose actually found a French doctor to diagnose her with it, if only more we’re around like that!
My ACTH is 20 (11-68) but my SST response was 174 pre and 396 post (450 being a pass). I’m not making the cut convincingly for either primary or secondary.
Endo has said he wants to give me a “tiny dose of steroids”… sounds suspiciously like the under dosing of thyroid medications doesn’t it? I’m checking Addison’s antibodies - off my own back, endo isn’t bothered in the least to get them done - but will be surprised if it is autoimmune, which it still very much could be.
Under the assumption it isn’t primary I am taking lots of adrenal supps now - B5, Vit C, adrenal cocktails, B complex, Vit D, ovasitol for blood sugar regulation etc. hoping they’ll hibernate/rest up while I take HC to get thyroid hormones metabolised properly and then come slowly back to life when I’m healthy enough to wean the HC 🤞mind you, best laid plans and all that… 😅
The doctor that diagnosed me with Adrenal Fatigue was an absolute rarity! A Hertogh trained doc. The majority of doctors in I've seen here don't even seem to know what and where the adrenals are even! If you mention them, they just look at you vaguely and change the subject. I think it's a universal problem. Doctors just don't get enough training on the endocrine system.
I agree GG, unless your head falls off and you need it urgently sewn back on or a round of antibiotics for an infected wound most docs here are abysmal 😞
I don't know much about adrenal glandulars. All I know is that some products use the whole adrenal gland, some use just the adrenal cortex. The whole gland includes adrenaline, the cortex doesn't, so many people find the cortex is more tolerable and helpful.
A couple of posts from an old thread that are worth reading. They are by an ex-member who was the administrator of a pituitary forum on Facebook but I don't know which one :
Thanks you HB. You are always so full of insight & resources 🙏🏻 I have tried adrenal glandulars and I did have a good response initially but it wasn’t enough to sustain me. I am already on HC (self sourced - I am fully aware of the seriousness of taking HC and do not recommend anyone else do it) and feeling the difference but it’s early days… I will use glandulars to wean back down when that time comes x
The adrenal glandulars look like a good product. I first tried two NDTs back a few years ago over the course of a year or longer, completely by myself without a doctor, to try an alleviate symptoms I thought were due to low thyroid (basal temp <36.0c, feeling cold and sometimes hot, hair loss, extreme salt and sugar cravings, difficulty losing weight ETC) and a TSH of 3.3 at the time, and very slowly working my way up to 3-4 grains taken daily, had no effect on me what so ever. When I did blood work, my TSH was suppressed and my FT3 was elevated. Looking at those results on paper without context, I was hyper, not hypo - so they definitely were being absorbed properly. I even tried multi-dosing. Temps and symptoms stayed the same. Makes me wonder if I would benefit from these adrenal glandulars now. It's the first time I've ever looked into them since I always thought it was the thyroid that went before the adrenals, but maybe it can work both ways? Anyway, fast forward to the present day; providing my MMH test wasn't one of the inaccurate ones, my TSH is >4 (up from 3.3 back when I decided to try dose thyroid)
it may be that you never metabolised the thyroid hormone properly and that your adrenals needed support too. It is a fairly common scenario from what I can see.
Yeah, I never investigated it fully but I think that sounds plausible. Does this mean, if this is the case, that my body is unable to use the external supplementary thyroid hormone regardless of how much I have in my blood, because my adrenals are not optimal? Because I can't think of anything else I did wrong. I tried dosing with/without food, my diet was okay. No stress.
I always thought it was the thyroid that went before the adrenals, but maybe it can work both ways?
I think it can work both ways. I couldn't tolerate any thyroid hormones very well when my cortisol was very high. I just about survived on T3, but eventually my attempts to reduce my cortisol must have worked because I found I could tolerate Levo. After a while on Levo alone I added in some T3 too.
Hidden I hope you dont mind that I ask humanbean about my results and pls chime in if you have any insights.
A saliva cortisol test is better but I have yet to do one. Humanbean can you pls help interpret my cortisol blood test. The first was taken at 8:21am for the morning cortisol and 4pm for the evening. I didnt get off my supplements as I should have because I didnt want to deal with the symptoms.
Those results look very good. Ashwaganda is known to lower cortisol over time via a reduction in ACTH. DGL just reduces the breakdown of cortisol that you have already produced.
Thanks for your input. It's strange that I get a pulsating feeling like a heart rate around the area where my kidney and adrenals are whenever I'm overly exhausted or my thyroid hormones are off or when I alter my thyroid meds or when my sleep is really off. At its worst my whole body starts buzzing when I'm extremely fatigued.
I must admit I am having trouble following all this. I am only scratching the surface of it all. However I would just like to applaud your description “just plug the gap where they can and move on”. This is my interpretation of the NHS in every contact with them. Total lack of critical thinking skills etc etc. I shudder to think of the money wasted in this system (our taxes) when a pause for real thought could benefit said system enormously. It’s an incredible acknowledgement of our current poor education of our medics, that this attitude, plus the tick box system is now the norm. It seems to me this is thoroughly embedded in the system, where poor education and lack of critical thinking extends to the decision/policy makers who flaunt not only their ignorance but their personal character flaws. It’s kind of more what you might think the mode of the armed forces. Just do as you are told without question. That may be suitable on the battlefield but not in a health consultation. I still think the NHS is a brilliant concept but it is being destroyed from within.
I couldn’t agree more with you arTistapple ! Love the concept of the NHS, but even as I was banging my pan for them during the pandemic I did it with a slightly heavy heart knowing just how upside down, back to front, side to side wrong their ways of thinking are. And not to be too tinfoil hat, but they all (generally) tend to think in the same ways… which gives the distinct impression that they are all being fed a party line in the infancy of their education that many remain dedicated to until they retire, never really knowing how many people they have overlooked, oversubscribed antidepressants for and under prescribed the right thyroid medications for. I know I am biased as my lens is very much a pair of thyroid-adorned glasses, but thyroid is a fundamental part of metabolism, and it is metabolic disease that seems to be at the heart of so many of these conditions - be it mental health, IBS, fatigue, infertility, cholesterol, pain… just all the tenets of what is means to be strong and vital. It would likely save the NHS (and us all) so much money and heartache if only they treated thyroid disease effectively and meaningfully. At the moment it’s feels very much like a robbing Peter to pay Paul kind of situation…
You mentioned searching different Addison's and AI forums. I know of the one with the Pituitary Foundation. Are you able to name the others?
I'm asking as it would be helpful for many other members on the forum with the same issues. As you know finding others with similar experiences can be beneficial and supportive; it's a pity there's not an Adrenal Insufficiency forum on Healthunlocked?
Yes I agree, I was gutted that there isn’t an AI forum here on HU. I’ve been in 4 different FB addisons/AI groups + 1 for adrenal fatigue. The one in particular on FB is very good - I’ll link it here
Being incorrectly medicated for thyroid, either because on inadequate dose, or poor conversion (linked to low vitamin levels) will put strain on adrenals as they try to compensate for lack of Ft4/Ft3
Dosing by TSH will almost inevitably result in inadequate dose levothyroxine
Well I do know Peatfield & Skinner had many a discussion over this!! Peatfield believed all people with hypothyroidism need adrenal glandular to supplement them whilst they're were tabulating their thyroid meds upwards. Dr Skinner believed that thyroid meds would correct the imbalance in the end. For me I found the glandular did help me for the first two years of 'proper treatment "by that I mean not being left on a starter dose of thyroid meds! But I had been really poorly for two years plus before that, unable to barely work. But once I'd fully utilised and was more optimal on my thyroid meds I weaned myself off them. Afrenals & thyroid are all the same loop system so it did make sense. These days because people are frequently left without support of their thyroid for such a long time then I could well believe the adrensl glands become stressed from trying to support the thyroid that they end up needing support..... Left too long maybe this becomes long term damage. I'm not surprised at all..... Incredibly sad though....
I’m New to adrenal area, and having a diagnosed thyroid condition (Hashimoto’s) and other autoimmune disorders.
Given the complexity of hormones I believe many hormonal things disrupt each other causing a cascade of fluctuations and problems.
In October I saw a new endocrinologist who was thinking my ongoing symptoms with my thyroid we’re actually an adrenal issues… so I actually to add I have more typical symptoms of Cushings than I do of Addison’s but he thought maybe I had Addison’s. 🤷🏻♀️
I’ve had good normal cortisol blood tests in past (all before 9am) but never had a saliva test and cortisol has been as I expected good, although I’m aware these blood tests aren’t the most reliable.
I had the synacthen test one early morning in January and like you or some mentions in this chat only cortisol is tested. I mentioned ACTH and was told ( endocrine nurse) they only do that for other problems mostly blood pressure problems 🤔
I had thyroid tested at same time (usual protocol re meds etc before testing) on just 100mcg T4 meds.
TSH 3.20 (0.27- 4.2)
FT4 15.12 (12- 22)
FT3 2.7 (3.1- 6.8)
As you can see very poor - and FT3 is actually under range for first time as I’m aware of, although my previous FT3 test were poor and that was taking 10mcg Liothyronine (split in two) also alternating days 100/75mcg of T4 it didn’t increase FT3 much either, below results are from Oct/2022
Free T4 15.3 pmol/L [12-22]
TSH 0.31 miu/L [0.3-5.5]
Free T3 3.6 pmol/L [3.1-6.8]
I’ve had slightly higher FT3 results without taking Liothyronine (same range) but never been higher than 4.2 which was on Liothyronine and my first test after taking it, all others been low in range.
I was told generally autoimmunity can cause low FT3, after questioning it all. The previous endocrinologist did try to microdose to get levels and well-being at a point we all could be happy with (usual fear of T3 side effects and having low TSH) So I saw new endocrinologist to get more Liothyronine but this new endocrinologist took me off Liothyronine to go back to basics and go from there, my TSH obviously has risen the unbelievable tiredness more constipation and the returned and stiffness as I expected but otherwise I’m ok… my Levothyroxine has been increased but I’ve been here before, my FT4 went over range so he’s decided to only do 4 days on a higher dose I’m on T4 only at moment 100mcg 3 days 4 days on 125mcg … but now seeing the results he hasn’t ruled out going back on Liothyronine I’m probably back late May after my next results.
So actually regarding this adrenal area mentioned the synacthen test for me showed my adrenals, well cortisol was doing well, but at the same time my FT3 was under range very low. … but the ACTH I cannot comment on… an area I’d like more information on.
Your Free T4 is only 33% through the range and your Free T3 is under range.
You are under-medicated and/or have poor absorption of your Levo, which based on your name could be because you suffer from coeliac disease.
If you can't absorb your Levo very well then perhaps you might do better with, say, liquid Levo. It would be worth the experiment if you could get a doctor to prescribe it which can be difficult because it is much more expensive than tablets.
But to start with I would say your Levo dose should be raised by 12.5mcg per day then see how you feel and what your results are.
If you can't raise your T3 with more Levo then you should be checking your nutrient levels - Vitamin B12, folate, vitamin D, and ferritin. Optimising nutrients will help your conversion from T4 to T3.
And finally, if your T3 is still low then you need to start taking some T3 with your Levo.
If, after all the above, you still feel awful then you should start looking into your adrenal health and your cortisol levels.
Unfortunately I’ve been there done that … for approximately 10 years having found 3 autoimmune disorders within a month I’ve battled to get to see Endocrinologist as absorption issues with coeliac disease and still symptomatic - I’m assuming it’s my thyroid I have Hashimoto’s, I have positive TPO antibodies only finally during lockdown got to see one … firstly I switched to Almus/Accord after getting various side effects including higher TSH with a couple of lactose free brands once on Accord/Almus absorption was better but conversion still dire I had increased Levothyroxine (T4) to every day from 100mcg to 125 mcg and my FT4 went over range and TSH lowered, FT3 was still very low in range… so throwing more T4 isn’t the answer and conclusion was rubbish conversion so then came in Liothyronine (T3) it was added to 100mcg daily then that was still too much so alternated T4 100 mcg one day 75mcg the next but again all this back n forth micromanaging dose but my FT3 at its highest only went to 4.2 when on 10mcg (split in 2 doses)
I did feel better but I still had some symptoms and due to the TSH now going under range unless I self medicated it wasn’t going to be an option with my endocrinologist, he retired and new endocrinologist wouldn’t supply - not until looked at things himself … my Gp cannot prescribe but can supply if it’s gone through endocrinologist… I’m just going around in circles at the moment.
I have Apple Watch and sent ECG readings to endocrinologist and had Dexa scan before and bone density is good, but still he was frightened of heart and bone problems which is commonly known with endocrinologist they go on about this … I persevered with T3 it helped somewhat but as TSH went under so no more T3 was offered… jump to last October and new endocrinologist decided it wasn’t my thyroid and adrenal but my synacthen was good and blood cortisol tests have always been ok… needless to say nothing every mentioned about ACTH side of things and this is an area I’m now interested in … I also have pernicious anaemia and have B12 injections and it’s always in 775 range or above granted I think my Vitamin D could be better and folate and waiting next bloods in May ferritin was ok.
This endocrinologist hasn’t now ruled out Liothyronine but I do think it’s only part of the picture as I’m perimenopausal still I actually now think and noticed a pattern where think this is connected, so where I do think I need to see better FT3 until through menopause and things settle I think it won’t be clearer… but totally agree with you but I still would like more information on ACTH area… if anyone has some good links to follow.
I have all my bloods done in in May I’ll repost a new post of my own afterwards with these… I was just interested regarding the ACTH bit in this post…and now taking more interest in pituitary area, not because necessarily help me just interested.
Re T3 I think endocrinologist thinks something else might be causing extreme low FT3 other than conversion and absorption issues.
Until had tests in May only B12 injection every 3months and daily D3 & K2
Intend to take Vitamin B complex & Magnesium after my results.
I always follow the preparation for blood test regimen.
Lactose free Eg Teva & Aristo give me digestive problems and my absorption is poor much better on Accord/Almus or Mercury I’ve found.
I’m going to do the genetic testing I think although my diet is good, other than supplementing because of absorption issues I feel I cannot do much more regarding nutrition other than going meat/dairy free which I’m avoiding until suggested it’s a problem.
Endocrinologist says it’s because of autoimmunity I have FT3 issues and have been eliminating other autoimmune areas as he says as I have polyglandular autoimmunity.
I don’t take lactose free levothyroxine or T3, but I have found (annoyingly) that dairy free diet, (as well as gluten and soya free) is significantly better/essential
If taking vitamin D, and especially on gluten free diet, likely to need magnesium supplement too
Likely necessary to be taking daily vitamin B complex
B12 injections might need to be more frequent too
Suggest you retest vitamin levels at least every 6 months until all are optimal
Carol, from what I understand addisons is different to secondary adrenal insufficiency. Do you have addisons antibodies or have you just been told you have addisons because you have low cortisol production? And did you fail the SST by a long way?
T3 is what levothyroxine (also known as T4) turns into in the body if it can do the conversion.
T3 is the active thyroid hormone that every cell in the human body needs to function properly.
Theoretically doctors can prescribe T3 but very few of them do. In the UK it is many, many times the cost of Levo. In some countries it is as cheap as chips. In the UK patients suffer as a result of the profiteering of drug companies that has been going on for years. They claim that T3 is difficult to make which isn't true. I think the profiteering started back in 2006.
Many doctors think all they need to know is the TSH (which is produced by the pituitary). This might be fine for people with no health problems other than straightforward primary hypothyroidism, but for a lot of people it fails badly for many reasons.
My pituitary gland doesn't work any more with steroid use over the years. This has caused me to have Addisons and needing steroids for life. I look like an oompaloompa
Addison’s is autoimmune destruction of the adrenals, it sounds like you have SAI induced by prolonged steroid use if it’s because of the pituitary? May I ask - what dose and how long were you on steroids to have this affect on your pituitary?
Over most of my adult life and I'm now 60. The last 7 years I've not been a week without steroids given for chest infections along with 13 different antibiotics. My adrenal glands apparently went to sleep and they can't get them to work again so I've been told if I stop taking steroids I will die. I'm on 10mg prednisolone and 15 mg Hydrocortisone in the morning, 15 mg Hydrocortisone lunch time and 15 mg Hydrocortisone evening. Levothyroxine 25 micrograms per day and loads of other meds for asthma
That is a large amount of steroids. With non-functional adrenals, you are also missing other hormones made by them such as pregnenolone and DHEA. Normal daily cortisol replacement is more like 25-30 mg of HC or 6-8 mg of prednisolone.
Does your doctor treat your thyroid by looking at your TSH? If he/she does then they are most likely keeping you permanently under-medicated.
There are nine hormones produced by the pituitary and they have various functions. I am not a doctor and I don't know if steroids will affect the pituitary as a whole or can affect just individual hormones.
If your pituitary isn't making enough TSH for your needs then you will most likely be left very under-medicated. TSH stimulates the thyroid to produce Levothyroxine (T4) and T3. But your levels of T4 and T3 will be far too low if your pituitary can't produce enough TSH.
This form of hypothyroidism is called Secondary or Central Hypothyroidism. Many doctors don't know about it and will continue to dose based on TSH, even though they should be dosing according to Free T4 and Free T3 when TSH is unreliable.
Also, when a GP arranges testing for someone with Central Hypothyroidism they must write on the form that the patient has the condition. If they don't the lab will most likely just test TSH.
I really don't know how they test it but I'm immuniosupressed so my immune system is non existent and my Vit D is 13 at the moment so I'm tired all the time.
You need to get copies of your blood tests (the actual numbers plus the reference ranges, not just the word "Normal"). Try and get hold of results for the last 3 - 5 years.
When you get your results start a new thread and post them, making sure to hide any identifying details. You can put one picture in each reply to the first post in a thread.
There are NICE guidelines on how to treat vitamin D deficiency that your doctor should use to treat your low vitamin D level.
Viv123 if you click on the name it will take you straight to their home page with all their history and discussion threads so you can have a good old read 🤗
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