I was the lady who was having ALOT of problems back end of last year and into this year with alot of bloods and testing done.
I just wanted to give an update.
I have seen a consultant who believes I am just in the very first stages of adrenal insufficiency, very mild hence why my tests are normally ok with some others lowish.
He is starting me on a 6 week trial of steroids to see if that makes a difference to my symptoms and if it does, he will then treat me as having addisons / AI.
He says he has a number of patients with very similar symptoms and test results to mine who have felt much better on steroids.
Secondly he also believes that my thyroid is not working particularly well. He's literally the first doctor to say this even though people on this forum were saying it for months.
He said you can tell it's not working very well by the low T3 and T4 levels but it's not working badly enough to really affect the TSH yet.
He says he cannot start thyroid treatment until we know about the AI because he said it's dangerous to start thyroid treatment with a question mark over AI so he will review starting treatment after he sees how I respond to the treatment for the AI first but he definitely wants to treat my thyroid.
Thirdly he has some others ideas if I don't respond to either AI or Thyroid treatment but he really thinks I will because he thinks my symptoms are due to a combination of them both, they are both just mild as to not cause massive blood test abnormalities.
I feel relieved that someone is finally "getting" it and understanding where I'm coming from.
I am a bit concerned that I'm developing a goitre as I constantly feel I have a lump in my throat so I am going to get my GP to check it.
I have started on Vitamin B, iron and vitamin D sprays after people's suggestions on here so thank you for that 😊
Whilst I am still struggling with fatigue and shakiness, I am not completely bed bound like I was in January and that's probably due to the vitamins giving me a boost.
So that's my update really.
I kinda thought I was on the cusp of something and I knew my thyroid wasn't quite right but the struggle was getting someone to listen.
Lets see if the steroids treatment makes a difference.
Btw, does anyone know if it's going to cause the dreaded "moon" face?
I know it's a small thing in the grand scheme of things but I'm a bit vain so that's the bit I'm kinda dreading though it'll be worth it to be able to stand and walk around again without shaking.
Ta
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Lucy___
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Hiya yes I did. I was going through a very low patch. Am hoping to rejoin the Facebook group aswell at some point which I left. I can't really remember my original name as it was just one the site gave me 🙈 I think it might have been LucyBurn but I'm genuinely not sure as I never took notice of it. How bad is that? Lol
Absolutely, I not only remember you but was wondering how you were doing. It’s great to ‘hear’ you sounding positive whilst also feeling a bit better 👏
Good luck with the steroids, I hope they have the desired effect.
Thank you 🤗 I really think the extra vit D, vitamin B12 and especially iron has been helping me to at least regain some semblance of normality, ie I can now actually get to the bathroom and have a wash whereas I couldn't before and I've also been dipping my toe into a tiny bit of floor yoga which is helping my mind I think.
It's just the big stuff like trying to go out without collapsing now 😬😄
I have been in touch with another lady who had almost identical cortisol and bloods to me and she's also been on a steroid trial and is feeling much much better after a couple of weeks on them so cross fingers 🤞
I certainly do not want to have AI but I really do want a life back again and if the steroids give me it then I'll take it.
And then it also means that we can start fixing my thyroid aswell which I know is dire with the T3 and the T4.
I am feeling a bit more positive, a little frightened aswell but I would just so much love to get my life back again.
And I'm really glad I'm taking the vitamins now. I didn't realise but over the last 10 years, when looking at previous blood tests, my vit D and especially my iron at points were absolutely dire. At one point in around 2016 my ferritin was about 15 and the doctors didn't even flag it 😬
I will definitely always now review my own bloods! Lol
Last year they were around 480 at 9am but they have continued to drop since then and the last one was 313. My last SST was 313 start, 515 at 30 mins and 620 at 60 mins. My renin was 50 and ACTH was 28 and aldosterone 400 but that those were done at a different time to the SST.
I have autoimmune alopecia and the doctor said the chances of AI or / and thyroid issues if you already have autoimmune issues are very high.
I think the problem is that my cortisols have always been in the "grey" area but nothing conclusive and so my symptoms haven't been taken into account until now x
Is it though? How was it diagnosed? Is there a particular test/s to diagnose it? If you without doubt have autoimmune alopecia then ignore this but it might be food for thought for others
Undetected and consistently low nutrients such as iron that have remained untreated for a long period can cause alopecia. Even short periods of sub-optimal nutrient levels can be responsible significant hair loss
I saw a dermatologist who said it was autoimmune alopecia and the endo agreed with him. Maybe it's the way it's presents on my head as I haven't had actual tests on it. I am looking to see if I get any improvement in the hair loss on my new vitamin regime though ☺️
I didn’t shed a lot of hair but enough for me to notice something was happening and become anxious about it. It’s fine now and I attribute that to getting as much as possible, optimal, including thyroid and adrenal hormones (using Adrenavive)
If your hair loss is caused by a combination of low nutrients and thyroid defieiciency you should see good improvement once on a good regime. Not much happened for me until I was about six months optimally nourished though, so don’t expect too much too soon
Yah! Is this an NHS endocrinologist or will you be using private? I have wonders about my cortisol and mh blood cortisol has Ben tested a couple of times with very good results.
Hiya, this is private endo. Unfortunately NHS endos tend not to look any further if blood are within "normal" parameters even if there are suspicions that something else is going on. You need to shop around until you find a doctor who takes the symptoms into consideration aswell as the bloods.
Hi Lucy I remember you 😊. It’s my understanding that one has to take steroids for as short as time possible because whilst they can be life saving they also have a lot of side affects. If you’re doing better is it worth waiting a while to see if you have more improvement on your current regime before going down steroid route?
I was actually up into the early hours last night discussing this very thing with my housemate 🙈😄
It is a really difficult decision because I am somewhat better than December / January but I am still struggling alot with the shakes and feeling shaky, especially when I try to stand. And still struggling with hypotension when I stand. And still needing to sleep only a few hours after waking up.
I don't really want to go onto steroids but the idea that they may give me a life back is very tempting.
It's only a 6 week trial of them to see what happens so we kinda figured I have nothing to lose really. If I feel alot worse on them and not better then it's more likely to be thyroid related than the cortisol.
We figured at least it was worth a try as I am better than I was but have kinda reached a stalemate now in terms of the shakiness and standing.
Hi there not if it is AI it is for life and if you stop taking them it can be life threatening. You will be talking about someone who has them for other reasons than the adrenal glands are not producing cortisol which is a life giving hormone needed for the stresses of everyday life.
I just don't understand why the NHS doctors won't do further testing because I have having absolutely terrible symptoms whenever I do anything active but they've literally just based their "your fine" on one cortisol test and an SST. Surely if I'm getting symptoms when I'm active that suggests a problem with cortisol at those particular times and not all the time?
I am frightened to go on steroids without knowing if it's PAI or secondary AI or even if I have AI at all but there doesn't seem to be a choice because the NHS doctors won't try to figure out my bloods and I can't afford privately lots and lots of tests.
I'm ok but I feel very lost and confused by my bloods
Hi Lucy. Glad you've found someone who will listen and take action 😊 Regarding moon face, I was on high dose steroids for quite a while due to sudden hearing loss. I didn't develop moon face. It doesn't seem to happen to everyone. Good luck with your treatment.
Thank you, it sounds so vain but it's the thing I'm most concerned about 🙈 Though the ability to be able to function again is most appealing even with a moon face
Hi Lucy. I am usually a lurker on this forum as I have had an underactive thyroid since my early 20s (now 65) and didn't know then anything about it but was just glad I was now losing weight.
I am on steroids (prednisolone) for a serious chronic autoimmune issue and I asked the exact same thing re a moon face. If you cut out refined carbs (no bread, pasta, rice, potaoes) , no salt or sugar, then you should be fine. I have been on pretty high doses and am 3 1/2 years in and no moon face or weight gain. It's really hard at first but you'll get the hang of it. Lots of protein and veg and yoghurt, cheese etc
Thank you, I'm wondering if he's decided on steroids because there has been a question mark my entire life over autoimmune conditions and maybe he thinks this might sort of cover both aspects. I dunno, it's really difficult when you have a condition but no one really knows what it is 🙈
I have a fairly healthy diet anyway but it is quite carb intensive so I will switch to a more protein based one. Thank you
I would not recommend people cut out salt in their diets. Salt is sodium chloride, and the body needs both sodium and chloride. The adrenals need salt to function correctly.
Deficiencies in sodium and chloride are described here :
I use the LoSalt as steroids deplete your potassium levels and this has additional potassium. There is salt is quite a lot of food already too.
The sodium causes fluid retention while on steroids as it alters the salt balance in the body and so holds onto it. The more sodium retained means more potassium lost.
A low salt, high potassium and high calcium diet is recommended
Hello Lucy,I do remember you,you were having an awful time of it and I was hoping for the best for you.Glad you have finally got someone who is listening to you and can give you some hope.Very best wishes to you and hopefully you have taken the first steps on the road to feeling better.
Glad to hear you've found a doctor that actually listens!
But this doesn't sound quite right...
He said you can tell it's not working very well by the low T3 and T4 levels but it's not working badly enough to really affect the TSH yet.
If you have a fullly functioning pituitary, the TSH should keep up with the FT4 and FT3 levels - even though it lags behind a bit. But, if your FT4/3 levels are low, AND your TSH level is low, that doesn't sound like a thyroid problem, that sounds like a pituitary problem.
Add to that the fact that you have low cortisol, and it sounds even more like a pituitary problem. Did he test your ATCH? If not, I would ask him to do that. Because if it is your pituitary at fault, your other pituitary hormones are also going to be low. So, just 'treating' your thyroid and your adrenals might not be enough to make you well.
Ah that was just me putting my own spin on what he said 🙈 lol He actually didn't mention my TSH, he just said both my T4 and T3 were low and needed treating but he couldn't do that before treating the possible AI as he said it was incredibly dangerous to treat thyroid with low cortisols as it could knock me into a crisis. Or something like that.
There has been a suspicion that it's all pituitary based but the bloods don't really stack up with it.
My ACTH was done in January and the whole results were :
Cortisol - 344
TSH - 1.8
Free T4 - 18. (12 - 22)
Prolactin - 896
Free T3 - 4.2 (3.1 - 6.8)
ACTH - 28 (less than 50 at 9am)
Sodium - 141. (133 - 146)
Potassium - 3.9. (3.5 - 5.3)
IGF - 1. - 15.4 (7.7 - 28)
Aldosterone - 402
Renin - 50.3
Aldosterone Renin ratio - 8
And I've also had a normal pituitary scan, without contrast though.
Since the above results my thyroid has slid again and is now
TSH - 2.6
T4 - 12
T3 - 3.1
Those were done about 3 weeks ago and my prolactin done last week is back down to 396 so normal again.
My last cortisol was 313 done when I had my SST a couple of weeks ago.
Start 317
30 mins 520
60 mins 630 ( I think, I'll need to check the exact figures)
So my SST was fine so I can produce cortisol, there just seems to be a major question mark over my symptoms and that the cortisol is in the "grey" area all the time hence his thinking that something along the HPA axis is struggling but we're not sure what and thinking that steroids might help.
My cortisols have been reducing slowly since last year when they used to be around 500 at 9am.
The last prolactin was normal but it was done in the afternoon whereas the others were done in the morning. Would that make a difference? I'm considering asking my GP to do it again but in the morning this time.
So yes, it does seem suggestive of pituiatry issues, it's just none of it is stacking up or making sense with the bloods 😬
It's all so confusing to be fair.
The one thing I haven't had done is a 24 hour urine cortisol test. Do you think it's worth having one done / asking for one?
I've had a 24 hour catacholmines test done which I think was normal but I will ask for that test result today so I know for certain.
No, your SST wasn't fine. And doing the test is not about being fine. It's about finding a reason for the low cortisol. So, if your adrenals are capable of making cortisol - which they obviously are - then the reason they aren't making it has to be due to lack of stimulation: i.e. lack of ATCH. Which is a pituitary hormone. So, that is another pointer to a pituitary problem, on top of a low TSH that doesn't correspond to the levels of your Frees. So, it stacks up pretty well to me.
The one thing I haven't had done is a 24 hour urine cortisol test. Do you think it's worth having one done / asking for one?
I don't know anything about urine tests, but I can't imagine it would add anything helpful to what you already know.
Hi there - yes 24 hour urine test should be considered really - I had one done and my face dropped when my consultant told me what I had to do - I told him I was working in an office and how on earth was I going to walk around with a large bottle of urine all day - he smiled and said I am told that a Marks and Spencer carrier bag suffices. Needless to say I did it but I wonder if anyone noticed I was walking to the loo with a rather large carrier bag ?
no all said ok but there again they said that about my thyroid levels for 15 years till I nearly died - but the ACTH they gave me on the first test made me feel fantastic ! As my consultant once said ‘they are only blood tests’ look for the symptoms!
Blood tests are to back up symptoms, because symptoms can be deceptive. Unfortunately, the majority of doctors know nothing about symptoms and just go by blood test results - maily the TSH!
Do you think my cortisol levels are low then? This is what I'm getting confused over because I've kept being told for months that they are fine and that my SSTs are fine and everything is normal and I don't have AI.
But now I'm being trialled on steroids because they think I'm starting with AI due to my symptoms but not my blood tests.
I'm really confused in my own mind because I genuinely don't know if my cortisols are normal or low.
The ACTH is also confusing to me at 28 because it seems to be neither high which would indicate Addison's or low which would indicate pituitary secondary AI. But occasionally people have told me that my ACTH is not right.
Do you know what number it should be in a normal person? I literally can't find that info online 😬
A couple of endos have raised their eyebrows at my Renin being 50 but again, I don't actually know what that signifies.
So I genuinely don't actually know how to compare my results to a "normal" person and I keep getting told such conflicting stuff, from all my cortisols are normal to no, it looks like you're starting with AI but I don't know why or what in my blood indicates it.
Or maybe the doctor is just going off my symptoms, the exhaustion and sleepiness is still pretty bad.
Like today for example, I slept all last night, then have been up for about 5 hours, been out to an appointment for half hour and I was actually falling asleep in the appointment and have needed to come back home and go to bed and rest as I'm actually falling asleep at 3.30pm in the afternoon. Not just tired, but struggling to actually stay awake 😬
Would you be able to do me a favour grey goose and explain in really simple terms to me (I'm thick and my brain is appalling when I'm tired which is most of the time) what it is in my bloods which is suggestive of AI?
I'm happy to try the steroids and then him treat me as Addisons if there is improvement on them but I really want to get it clear in my own mind what it is that is suggesting AI in my bloods and I'm struggling to understand it.
Is it also connected to my T3 and T4 being bad aswell?
Early morning, your cortisol should be at the top of the range. I think I saw somewhere that yours is at the bottom, but I can't find the numbers, now. So, yes, that would be low.
I've kept being told for months that they are fine and that my SSTs are fine and everything is normal and I don't have AI.
The majority of doctors just look to see if the result is in-range. They don't care where in the range. But that is what is important. So, if your result is anywhere within that range, they will tell you that everything is fine and you don't have a problem.
It's only if the result is outside the range - either high or low - that they will sit up and take notice.
The ACTH is also confusing to me at 28
Do you know what number it should be in a normal person?
No, I don't know that. But the 'range' is also confusing. Just saying below a certain number is not very helpful, is it. A range needs a top and a bottom. Because zero is below 50 but I can't imagine that would be a good reading! So, I don't know.
Would you be able to do me a favour grey goose and explain in really simple terms to me what it is in my bloods which is suggestive of AI?
The low cortisol, I would imagine. Have you had your DHEA tested?
Is it also connected to my T3 and T4 being bad aswell?
Well, you do need good levels of T3 to have good levels of cortisol. But, if you have a pituitary problem, that would be the connection - although not the cause. If the thyroid and the adrenals are not being sufficiently stimulated by the pituitary the thyroid hormones and cortisol are going to be low.
Hi Lucy, glad you seem to be getting somewhere at long last - please don't be fearful of steroids - if you are deficient then all you are doing - as when you take thyroid hormone when you are deficient - is putting back what you need. I have AI - it is a nuisance but once you get the dosage right you shouldn't get a moon face that is for people who aren't deficient in their adrenal gland response but need it for other reasons like an inflammatory symptoms issue. You will feel SO much better - it does take some management and there are forums that have helped me no end and please don't hesitate to ask others who are AI to help in the days when you are learning about AI etc. -
The ADSHG Forum is for everyone living with Addison’s and adrenal insufficiency, their families, friends and all those who support them. We have members from all around the world! You’ll need to be a member of the ADSHG to read previous conversations, ask questions or answer other people's questions …
There are many other self help groups on the net and I also use a USA forum but I cannot think of the name of that group now - the one above is the UK version and they are very helpful and so are USA people.
Having AI exhaustion is like barely being alive exhaustion - you feel like you are dying - it is awful - no energy to do just the day to day living things we take for granted. I went to a meeting of AI patients in Oxford for a talk with Professor Wass - (now retired from the NHS) who has a particular interest in AI/Addison's disease and I met lots of patients and heard their stories and their lives had been changed by taking the steroid their body needed so desperately. One of them was going up Mount Kilimanjaro shortly - to say I was impressed - it gave me great hope. Just like someone with say high blood pressure or other medical problems that need regular medication you will learn how to monitor and live with your condition and hopefully be back to normal again. Please bear in mind that if your thyroid has been out for many years (as mine was probably all my life in some degree) then you adrenals take up the slack and get exhausted from overworking to keep your body going. Whilst you are under review for AI please be careful with exercise otherwise you will exacerbate your issues you need rest rest and more rest - give you adrenals a chance to recover don't ask them to work any harder at the moment. Hope this helps.
Lucy to add to my previous reply - can you ask your consultant what he feels about DHEA and whether he has tested for it - Professor Wass does advocate DHEA in patients who are low.
Hi Lucy___ I've found you! I've been wondering how you've been, I know how much you were struggling. I couldn't find your old username and got worried. So good to hear your update and really pleased you are finally getting some help. I will keep my fingers crossed the steroids will begin to have a good effect on your symptoms. It must be such a relief to finally have a consultant take you seriously, understand what's going on and be willing to try to help. I'll be honest and say (selfishly) your post actually gives me some hope for myself too. Our journeys have been quite similar - test results far from optimal but not out of range making it very difficult to get help on the NHS. Do keep us updated, it's always nice to hear how people are getting on. Take care Lucy 😊
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