I'm new to the forum so this is my introduction I suppose... So... Hi! if I make any mistakes don't be afraid to correct me.
Long story short; I've been suffering a wide range of symptoms for years and have seen several specialists, with the current one being an endocrinologist due to some low cortisol results.
Current main issues;
1. Fatigue (unable to exercise in any shape or form... Normal daily tasks are just exhausting)
2. Mid back pain both sides (kidney area)
3. Brain fog and memory issues
4. Heart rate increase (jumps up inappropriately for basic movements/tasks)
5. Sleep problems (wake up at 3am and there's no getting back to sleep)
6. Neck pain / pressure
7. Muscle aches
8. Loose stools (currently)
I've had MANY blood tests, took many to list. Many deemed ok by the GP, but test results of interest may be;
9am cortisol: 178nmol (low)
Ferretin: 700 (this has been chronically high)
Aldosterone: 267pmol
Renin: 38mu (high)
Se n term pro BNP: <50 (suggesting not HF)
The ferretin is supposedly high because I'm heterozygous for haemochromatosis, but not deemed to need treatment for this.
Done some research due to having problems for years and I'm now considering that I could have primary / secondary adrenal insufficiency.
Would appreciate any thoughts or input here on this or if there are other avenues I should explore?
I've recently booked in for another cortisol test along with ACTH as I'm on a long wait list for an NHS endocrinologist so I can get a Short Synacthen test... I tried to organise this privately but can't seem to get it sorted.
Feeling worse as each day passes, so hopeful I can get a solution soon and get my life back.
Thanks for reading and for any input at all.
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Entwicklung
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The most important blood test results as far as we're concerned are:
TSH
FT3
FT4
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin + CPR
results AND ranges. Ranges vary from lab to lab so we always have to include those.
I take it you haven't been diagnosed with a thyroid problem yet, as you haven't mentioned it, and are not on any form of thyroid hormone replacement? But if you do have a thyroid problem it's going to affect the adrenals, so we usually start with the thyroid first.
Hi greygoose - sorry I forgot to say no I've not had any thyroid diagnoses so not treatment on that front. I might just investigate this further though with more detailed blood tests though.
Yes, I think you should. That is the obvious course of action. A lot of your symptoms sound like they could be due to low thyroid, and others due to low nutrient levels - which, of course, can be caused by low thyroid. So, that is the best place to start. If I were a doctor - which I'm not, thank the lord! - I would automatically test thyroid whatever the patient came to see me about because low thyroid can so often be the cause, and could easily be remedied - and incidentally save the NHS a lot of time and money!
Haha same here... Although to be honest my brain has really enjoyed learning about all these health aspects and piecing the puzzle together. I certainly haven't got an answer to my problems, but I'm getting closer and would be nowhere near it if I left it to the GPs. That's not to blame them, they're over-worked and under appreciated for sure. I said to my GP yesterday in fact, that once we find the problem and I'm better I'll be taking him out for a drink on me. He's been kind in organising tests for me and patient too, but the complexities of the issues I'm having have him stumped.
Thank you again - I will definitely update once I have some full thyroid results.
You’ve had excellent responses from Slowdragon and greygoose
I just wanted to tag JumpJiving (if that’s ok!) with regards to your horribly low cortisol level. I’m amazed your GP hasn’t flagged this up to endochronology for urgent review.
Ah thanks for your reply J972... I appreciate any and all help. My GP has referred me on, but it's a long wait for NHS endocrinology (I'm looking at 30 weeks). In the meantime I've consulted with an endo privately, but he doesn't seem overly concerned with the cortisol and only the Aldosterone/renin ratio (which looked ok on the first test, but I have a repeat booked). Research online suggests cortisol is low, but the range on the blood test results bottoms out at 133 so if it's over that nobody seems concerned despite the life altering symptoms I'm having.
You’re more than welcome. Just being listened to and understood can be really powerful, right?
So I’ve had a read through your other post with the frankly impressive collation of blood test results and I note that your TSH is always within range. Don’t be disheartened by this from a thyroid diagnostic point of view.
It’s important to establish the time of day the thyroid tests were done; TSH follows a circadian rhythm, peaking in the early hours. From a practical standpoint, it’s recommended that blood tests are booked for as early as possible, when done via GP, I.e. 8.3/9am. Another possibly important thing is to have the tests whilst fasting. Lastly, biotin can skew results a bit so it’s best to lay off this for a few days beforehand (I see you’re now aware of this).
Your FT4 is low in range but you’ll soon come to appreciate that the most important thing to test is your FT3. You’ll probably need to do this privately, pretty much everyone on this forum seems to have to take this approach!
Have you got details of private testing companies yet? We can use a 10% discount for some.
Lastly I just wanted to bring your attention to the work of thyroid patient advocate Paul Robinson who’s written extensively about the unreliability of blood tests for diagnosing thyroid conditions. Here’s a link:
You're 100% right there J, I feel so much more heard than I did this morning that's for sure. I appreciate all of the input here massively. It's crazy how you can feel so alone when facing issues with you're health, even with an amazing family around you. I can't discuss it with most of them and need to hide it from the kids as best I can.
Ah I will certainly consider that in terms of the blood tests in future... I knew cortisol relied on a 9am test but not thyroid. I'm going to organise some private testing for this so I'll aim for the 9am slot always in future. I hadn't considered thyroid as the issue based on the NHS tests so far, but I need to explore all avenues.
Thank you - I've got some private tests organised via privatebloodtests.co.uk for tomorrow, so if this service goes well I'll look at using them again for the thyroid. Having said that, it could be worth looking at prices too, as this is becoming an expensive business for me, but I'm desperate.
For additional info, if it's relevant, a nice rheumatologist I was seeing organised lots of tests for me a few years ago in terms of autoimmune but said they were all fine. ANA I believe, but I don't have the details on my file for some reason.
The symptoms that you list are typical of low cortisol, even the waking at 3am.
Your 9am cortisol level is low.
Below 150nmol/L patients should be put on replacement steroids immediately and referred to endocrinology. Strictly speaking, the NICE guidelines (for anybody over 16) say for below 150nmol/L "Consider starting management for adrenal insufficiency", but in practice that "Consider" should be read as "Do it now".
Between 150nmol/L and 300nmol/L, the NICE guidelines say "Recognise that the probability of adrenal insufficiency is uncertain. Consider repeating the serum cortisol test. If it remains at this level, seek endocrinology advice or referral". However, at 178nmol/L at 9am, and with the symptoms that you listed, you should be treated on the basis that you have adrenal insufficiency. Where there is any doubt, it is safer to be treated and turn out not to have adrenal insufficiency, than it is to not be treated with adrenal insufficiency.
At 178nmol/L, I would expect you to feel pretty rough unfortunately. I have included at the bottom of this post some guidelines for ensuring blood tests provide useful results, rather than being affected by other things.
Was your renin test done upright or supine? The reference ranges differ depend on which it was. If supine, then your renin is high, otherwise it is in the usual reference range.
In terms of testing, the next steps as you have realised will be to have ACTH tested and the SST done. TBH, to interpret the results with confidence, they want to be done together, the ACTH just before the SST is commenced. Unfortunately, many NHS hospitals only do the SST, presumably as an ill-conceived, cost-cutting measure, but both are required to have any degree of confidence in the result. Believe me, if you have (as it would appear) adrenal insufficiency, you want to know the type and the cause. The cause isn't always determined, but managing the condition well (and possibly reversing it in the case of secondary or tertiary) depends on knowing the type and ideally cause.
I suggest investigating good endo's in an area that you are willing to travel (when feeling poorly) and investigating waiting lists, then ask your GP to refer you accordingly rather than sit on a waiting list for months whilst getting worse. Adrenal insufficiency is a life-threatening condition, and the latest figures show mortality rate of 5% (1 in 20) for those that go into crisis (ref. ESE Adrenal Patient Forum 2024 at ese-hormones.org/what-we-do... ), so sitting on a waiting list is not what anyone with this condition should be doing.
It is worth noting that most endo's are even less knowledgeable about adrenal insufficiency than they are about thyroid conditions. Many GPs will never *knowingly* see a case of adrenal insufficiency, so they can be completely clueless. There are about 9000 cases of primary adrenal insufficiency in the UK, about double that secondary, and no known figures for tertiary (which is what I am thought to have).
Many endos (and A&E doctors) are only aware of primary adrenal insufficiency (Addison's) so completely miss secondary and tertiary adrenal insufficiency. It may be that your endo is one of these.
Do you have any of the following symptoms?
* Unusual skin pigmentation (often in folds of skin, but also around lips, around gums etc. Can be hidden away in intimate areas)
* Blood pressure drops/dizziness when standing
* Salt cravings
Are you using, or have you used, steroids or opioids for more than a few weeks? That can include asthma inhalers, nasal sprays/drops, tablets, creams etc?
Do you have any auto-immune conditions?
There are a number of medical conditions and medicines that can cause adrenal insufficiency, but as you said that you are previously fit, I haven't listed those here.
If you do end up sitting on a waiting list, make sure that you are aware of the signs of going into adrenal crisis, and call 999 if you feel you are heading that way. Make sure those around you know the signs too as the person going into crisis can rapidly become unable to react as required.
Before any cortisol-related tests, avoid any steroids, liquorice, grapefruit, ashwagandha. Try to avoid chopping and changing supplements. Cortisol blood tests want to be done 8-9am (unless a shift-worker, jet-lagged, or serious insomniac). The time of an SST doesn't really matter, but if started 8-9am, the baseline level doubles as an early morning cortisol test. ACTH should be done just before the SST is started, and the sample for the ACTH put on ice and sent to the lab within 15 minutes.
Regarding adrenal antibodies, be aware that it is possible to have adrenal insufficiency (primary, secondary and tertiary) without adrenal antibodies. It is also possible to have adrenal antibodies and have no symptoms of adrenal insufficiency. The ESE forum that I linked to above includes details of how many people with antibodies but without symptoms do/do not go on to develop symptoms within 10 years. It's safe to say that, like many other aspects of testing, adrenal antibodies give a clue, but not a definitive answer.
DHEA in men is still an area that requires more research. Some endo's prescribe DHEA where levels are low in adrenal insufficiency patients. Some do not. There are known risks associated with supplementing DHEA, but there is also a lot that remains unknown. I did supplement for a while as mine was below the bottom of the reference range. Whilst supplementing, some of my other bloods went a bit nuts (prolactin for instance went well over range). Since stopping supplementation, those other bloods are back within range. The problem is that there has, as far as I am aware, been no research into such relationships, so whether there is cause-and-effect I do not know. Whilst you could get your DHEA level tested, I wouldn't consider it a priority at the moment. If you end up being diagnosed with adrenal insufficiency and are started on hydrocortisone (or alternative), then you might want to check your DHEA level at that point.
Hi Jump living, thank you so much for the detailed info. I've learned something there about the renin, which was sitting upright so I assume that means that isn't an issue for me.
I'm not feeling good at all, feel like a time bomb waiting to go off to be honest... Seems like only a matter of time before something major happens is my gut instinct with some of these pains and problems I'm having. I do feel that cortisol is at the root of it, but it's only a gut instinct based on hrs of online research and looking at my blood tests. I was very confused when it went up to 313 the second time to be honest, but I'd started on the vitamin B complex with no knowledge of Biotin. Why on earth don't the GPs know about this and tell us. I'd also been up since 4am that day (could not get back to sleep no matter what), so I wasn't sure how that would affect things.
I have craved salt for as long as I can remember, the saltier the food the better for me. In terms of darker skin I've kept my 'tan' on my face and arms all winter and have developed a new large freckle near my eye which annoys the life out of me and two on my hand as well. Couple of darker skin ears on my feet and also, although it sounds weird, my feet and legs have always been super hairy but now my feet hair has gone and it's gone off my shins too. That could well be with age but I read somewhere about hair loss on extremities so it's interesting.
Yeah I also have e POTs symptoms at times, sometimes really bad. Although I'm sure my BP is generally high, which is a conundrum. I'm not sure, but I think the pots type problems depend on my eating and if I lack salt... But I don't like experimenting too much because it ruins me and I still need to function for the kids and work. Which is getting difficult.
And yes I've been in great shape previously and only dealt with migraine, asthma and a dodgy back at times. I used to run half marathons, done tough mudder etc.
Looking forward I have a cortisol, acth, dhea and adrenal antibodies test booked early tomorrow (Monday morning), but I think I took biotin on Friday morning. It was Friday night I learned about biotin. It was only the recommended daily allowance so I'm hoping it's ok and doesn't affect anything. I tried to rearrange today (Sunday), but they were shut so it's too late. Hoping it all works out. My cortisol could be dangerously low with the way I'm feeling so I need an accurate reading.
Interestingly yes I had a bout of terrible breathing a couple of years ago so the GP gave me a pink steroid inhaler called 'fostair', which worked like magic. I felt like a new man taking that from day one, couldn't believe it. However, I started to get some pains in my back then and other problems so I stopped taking it. I can't remember my exact reasons if I'm perfectly honest but I knew I had to stop using it if you know what I mean. I believe this could be an issue in terms of the adrenals so I mentioned to a private endo I saw, but he wasn't worried about it at all.
Looking at a few posts on here I will definitely look into getting the thyroid checked properly / privately. Do GPs accept results obtained privately? The reason I ask is that I may be ok affording some testing, but any treatment needed I couldn't afford I'm sure of it so would need to get the results back to the NHS in the hope they would hurry up and treat me.
Thanks a million for your efforts here and all the useful info.
The jump from 178nmol/L to 313nmol/L could be caused by a number of factors, including time of blood draw, different usage of asthma inhalers, change in supplements, or a physical condition that can make ACTH (and hence cortisol) cycle up and down.
To get consistent readings, it's important to stabilise everything as much as possible prior to the test(s). Unfortunately, most GPs (and doctors in general) don't know what might affect particular blood tests so won't offer guidance.
Keeping a tan all winter (if that is not normal for you) and having dark pigmentation appearing are suggestive of primary adrenal insufficiency, with the pigmentation being caused by high levels of ACTH (the ACTH breaks into two parts, one of which leads to pigmentation).
Salt cravings are also suggestive of primary adrenal insufficiency (although, I had them badly just prior to diagnosis, even though I am thought to have tertiary adrenal insufficiency). There is a YouTube channel for people with adrenal insufficiency called The Pickle Jar, named because of the cravings caused, particularly by primary adrenal insufficiency.
Although hair loss on shins and feet does happen as people age, that wouldn't normally be at age 40.
I did lose hair from my shins, but this is not thought to be a typical adrenal insufficiency symptom. In females, particularly with primary adrenal insufficiency (but it can happen with secondary and tertiary), loss of underarm and pubic hair can occur, but it wouldn't normally happen in males. Thyroid issues can cause hair loss. With adrenal insufficiency and cyclic ACTH conditions, hair loss from feet and shins could be caused indirectly, as cortisol levels impact the cardiovascular system and skin/collagen.
Blood pressure is normally low with primary adrenal insufficiency, but can be high with secondary and tertiary (this confuses A&E doctors regularly, who deny patients are going into adrenal crisis because in secondary & tertiary patients going into crisis the blood pressure can spike before then crashing).
Blood pressure drops when going from sitting to standing are more common in primary, but can happen in secondary and tertiary (I had them quite badly even for a couple of months or so after starting hydrocortisone, although they settled down after that). Patients with primary adrenal insufficiency are typically given fludrocortisone to help with this.
Fostair is certainly not the most potent asthma inhaler in terms of risk of suppression of the HPA axis (causing tertiary), but it can happen. There are ones that have lower risk though (Alvesco is one, but there are others even lower risk than that), but the inhaler still has to be effective for the asthma.
If you do have adrenal insufficiency, or a cyclic ACTH condition, you will really want the ACTH and SST done together. Even without the extra complication of cyclic conditions, both are required to have a high level of confidence in the diagnosis, although if your skin pigmentation is typical of primary, that would certainly add confidence too. See what results you get, although remember that the ACTH results take a couple of weeks or so to come back (SST is same day).
As long as you don't suffer from health anxiety, I would suggest Googling skin pigmentation for Addison's to see if it looks like what you have, but also Google skin for Cushing's - the two are quite different, but may give you something to compare against. Remember that the images online are more severe than most people get - those with an all-year tan but no dark spots/lines sometimes like having that particular symptom.
As to whether GPs accept blood tests done privately - it really depends on the GP. My GP practice has previously always been dismissive of privately done blood tests, but after being so dismissive at the end of 2023 that they put my life at clear risk, they now pay attention to what I tell them, long may it last. Of course, a lot of blood work is completely beyond their knowledge, so it's useful to be able to guide them
Hospital doctors (in my experience, at least) are more accepting of private blood tests - when I was in Same Day Emergency Care at the end of 2023, I took my Excel spreadsheet with the history of all of my blood tests with me - the doctor there found it incredibly useful, as it gave him information that he couldn't access through the NHS systems, and even for information that was in NHS systems my spreadsheet allowed for easier viewing of data & trends.
The usual suggestion for finding a good endo for adrenal insufficiency is to check those at your local Pituitary Centre of Excellence. IMHO, even that is a bit hit and miss depending on where in the country you are (bigger cities are usually better for this). I would suggest joining the Facebook group at facebook.com/groups/1759489... and asking for recommendations in the area that you are willing to travel. As well as that, search on iwantgreatcare.org/ for reviews of endocrinologists in the area. London is good, Sheffield is really innovative, but there are other good places too.
Thanks so much for all this info, it's invaluable. I've just got back home from the private blood test appt. I had to drive 90minutes on busy icy motorways to get there so if the cortisol isn't off the charts something is very wrong.
Weirdly enough, on the motorway where it was super stressful my kidney pains were massive, almost like they were crying out for some help. Probably under a bit of demand there this morning I'm sure. Be interesting to see how that affects the results, but I'm hoping it does t work against me.
HR is 95 now lying down, can't seem to get it down. Feel like the clock is ticking for someone to figure out the cause here.
As you suggest here I'm interested in finding an endocrinologist with an open mind on these matters who won't go blindly off reference ranges and will consider the full picture ... Please pardon my ignorance but how would I best go about researching/finding this person? I seem to have failed at this so far so any advice greatly received.
Thanks J972 . Unfortunately, there is something horribly wrong with the Alerts in HealthUnlocked at the moment, so I still didn't get one despite you tagging me. Just happened to spot this as I was scrolling!
Grey goose, SlowdDragon; thank you both for taking the time to read my post and for taking the time for such detailed responses, it's really kind and is appreciated.
{TLDR Summary - Lots of blood test results, a few out of range Inc high ferretin, lower end folate and vit D, low cortisol and high renin. Many problems at the moment Inc kidney pains, gastro issues, neck pain, fatigue, high HR. More adrenal tests booked. Biotin may have interfered with some of my more recent test results as I didn't even know it was in my vitamins... Any thoughts much appreciated}
As you can probably tell I'm not overly familiar with the site so not entirely sure I'm in the right place (my brain is also not working on all cylinders at the moment, and that's an understatement), but I saw most of the adrenal posts were on here. Please do direct me wherever needed; no offense taken.
I'll try to field all of your collective queries and include some more detailed blood results ... I have a LOT of them. The only problem, which I became aware of only last night, is that I take a vitamin B complex supplement and this includes biotin. I've literally never heard of that before yesterday, but have been taking it somewhat sporadically. I believe these b vitamins are good for me but may have interfered with some of my blood test results, which is quite frustrating to learn. I've also taken vitamin D for some time as my levels were super low and they have increased since, which is good.
So, some results ... (Range in brackets)
Thyroid
TSH (0.27 - 4.20)
Jan24 - 1.5
Oct24 - 1.4
Nov24 - 1.4
Serum free T4 - (12.0 - 22.0)
Jan24 - 14.8
Oct24 - 14.8
Nov24 - 15.3
Iron/Liver
Ferretin. (30-400)
Jan24 - 610
May24 - 624
Oct24 - 701
Iron (5.8 - 34.5)
Jan24 - 19.7
May24 - 26.7
Oct24 - 20.4
Serum transferrin (2.0-3.6)
Jan24 - 2.07
May24 - 1.92
Oct24 - 2.28
Se unsat binding capacity. (50-90)
Jan24 - 52
May24 - 48
Oct24 - 57
Transferrin % saturation (16-50)
Jan24 - 38%
May24 - 56%
Oct24 - 36%
Albumin (35 - 50)
Jan24 - 44
May24 - 43
Oct24 - 48
Total protein (60 - 80)
Jan24 - 72
May24 - 68
Oct24 - 75
Alkaline phosphate (30 - 130)
Jan24 - 72
May24 - 70
Oct24 - 84
Serum bilirumen (below 21)
Jan24 - 7
Oct24 - 10
Serum ALT (0-41)
Jan24 - 37
Oct24 - 38
Plasma gamma GT (below 60)
Jan24 - 40
Oct24 - 36
Renal profile
Serum urea (2.5 - 7.8)
Jan24 - 4.2
May24 - 3.5
Oct24 - 3.4
Serum creatinine (59 - 104)
Jan24 - 85
May24 - 83
Oct24 - 83
Vitamins
B12. (197-771)
Jan24 - 509
May24 - 513
Oct24 - 468
Folate. (3.9-26.8)
Jan24 - 5.6
May24 - 5.4
Oct24 - 4.7
Vit D3 + D2 combined. (No range)
Jan24 - 47
May24 - 75
Oct24 - 97nmol
Adrenal - endocrine tests (Nov24)
Metadrenaline - 186 (no range)
Normetadrenaline - 381 (no range)
3-Mthoxytyramine - <75 (no range)
Aldosterone - 267pmol
Renin - 38mu/L (under 5)
Cortisol (133 - 537)
11 Oct24 - 178
31 Oct 24 - 313 (started taking b vitamins prior to this result to try to feel better after some research)
Prolactin -108 (86 - 324)
Testosterone - 14.3 (8.6 - 29.0)
Gonadotrophin
LH - 4.4 (1.7 - 8.6)
FSH - 2.1 (1.5 - 12.4)
Other (not sure how to categorise these)
ESR - 5 (2-10)
HbA1c - 36 (below 41)
Cholesterol - 5.3 (below 5)
Plasma C reactive protein - 3 (0-4)
'Anion gap'
Serum sodium - 141 (133 - 146)
Potassium - 4.8 (3.5 - 5.3)
Serum chloride - 103 (95 - 108)
Serum bicarbonate - 30 (22 - 29)
Serum anion gap - 13 (10 - 20)
OTHER INFO...
1. Recent findings on an A&E generalised CT scan showed a 7mm mass in upper left abdomen labelled 'probably a granuloma'. GP doesn't seem worried about this.
2. Several ECGs Inc a 24hr tape said heart is ok, but with some ectopic beats.
3. Problems have been going on a loooong time. Kidney pains, gastro issues, high HR (sporadic), neck pain/ pressure, exhausted easily, waking at 3am, photophobia, headaches/migraines, etc etc. I've been trying various things since things got bad end of September including multi vitamins, b complex, vitamin E, electrolytes and ashwagandha at times (sometimes people make you think it's in your head or stress or something).
3. I'm booked in for ACTH blood test, DHEA, Adrenal antibodies, cortisol repeat and Aldosterone/renin repeat. Also have echocardiogram booked and 24hr BP monitor.
4. Really feel a short Synacthen test would be useful to rule out Addison's, but not been able to organise this as yet.
There's definitely enough information in my workup and symptoms to give the right person enough clues to start to figure this out, but I've not encountered them yet. It's good that from the results over time I can see some trends too. I'm going to reach out to the haemochromatosis society for some more info as well even though I'm told I shouldn't have any problems with my heterozygous diagnosis.
My research leans towards Addison's or similar issue, but not a perfect fit.... Still working on it.
Again, any advice or thoughts very much appreciated, and all the best to everyone out there.
Instead take a daily vitamin B complex to improve low folate
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
I've also taken vitamin D for some time as my levels were super low and they have increased since, which is good.
How much vitamin D are you taking
Keep supplementing
Are you also taking daily magnesium supplement
Test FULL thyroid and vitamin levels 6 weeks after starting good quality vitamin B complex
No I've stopped the ashwagandha and I'm stopping most things now but will keep up the vitD, magnesium and b complex (after blood tests).
CRP I'm sure I've had tested as I went through a period of gout like symptoms and it rings a bell. I'll investigate this and report back if I find it, maybe I missed it earlier.
I agree - I'll get the thyroid fully checked out with full bloods and the antibody test asap. Glad to have another avenue to explore here.
Yes magnesium has been quite the saviour, ridding me of some very irritating and worrying palpitations. I'm certain this is what's helped with that.
I take VitD+k2 drops... Not entirely consistent with the amount in honesty, some days 3 drops or more, some days the recommended 2 drops (35ug of D, 25ug of K2 as mk-7l). I really need to be more consistent with the vitamins.
Hmm I did test positive for COVID at some stage but neve had a big issue with it. Also, it's hard to remember but I do feel that my problems date back farther than this. I've suffered on and off for years. I'll have to have a look back at records and see what I can find on that front.
Thanks again for your help and input... Greatly appreciated.
Not that I know of, I have genetic haemochromatosis (not sure if that counts as auto) but my family won't test for it even though it was suggested to them.
Ah really appreciate this, and the links so so helpful. The vitD spray is a must... And I like to have k2 with it as I'm a little worried about the heart with the palpitations and because tbh I'm overweight here.
I'll keep going with the VitD supplementing. This definitely helps.
I'm taking magnesium too - this seems to have rid me of some terrible palpitations so I'm over the moon with it. It's one thing I have been consistent with as I put it in as powder in my drinks each day.
You certainly tick many of the low thyroid boxes and with that comes adrenal fatigue (NHS don't recognise this as a condition) this links in the kidney area pain as the adrenals sit on them, spikes in HR, waking early hours is often an adrenal rush kicking in due to low thyroid hormone levels. Another cause is blood glucose dropping too low
I recognise all of these symptoms from my journey and sorting out adrenal support and fT4/fT3 along with optimising all your low vits and mins
I shall flag up your terrible folate which hasn't improved with the B complex so would suggest adding a separate folate supplement
Cortisol saliva tests give 'free cortisol' levels and DHEA, though again the NHS don't acknowledge them it would give you a better understanding rather than blood serum cortisol which is 'total cortisol'...
Hi there Tiggerme - thanks for all this info. Seriously appreciated.
I'm going to get the thyroid checked fully.... I've possibly been misled by GP interpretation and lack of info.
One thing I have had a lot of, is sort of like palpitations but seemingly in my throat... Is that possibly thyroid related? Sounds weird, but many of my symptoms to to be fair.
Ah yes the folate - I do have that separately but need to be more consistent in taking it... I've been a bit up the wall trying different things to see what helps but not being regimented with it on my bad days particularly!
Wow I relate a LOT to many of these things... Even unusual ones like hissing in the ears and lack of sweating. I've been wondering what might cause that as I always sweated heavily in and after a bath but now nothing at all. Very interesting.
Well, that's me off to book some private thyroid tests...
I need to write this now before I try to respond to everyone individually; I'm literally overwhelmed by the responses here... Thank you SO much. It's such a relief to have people to help or even just offer support who actually have knowledge in these areas. Especially after being so ill for so long and just trying to keep going despite Dr after Dr finding nothing wrong.
This is all hugely helpful to me so thank you every one of you who took time out of your day to help. So lucky to have found this forum.
I'm going to try to respond to everyone here - I'm struggling a little with the layout of the responses on my phone here and my brain fog is really thick, so if I miss anyone please forgive me and also give me a nudge please, no offense will be taken.
Quick check on the off chance anyone is about; would the antihistamine 'Promethazine hydrochloride' affect cortisol, DHEA, ACTH or adrenal antibody blood tests at all?
My GP told me to try these to sleep better... Not sure whether they'll interfere with anything now though after the biotin revelations 🥲
Worth putting up a new post with this question as more folk will see it, it also helps break things into more manageable chunks so easier to look back on, long threads become really hard to follow 😵💫
Entwicklung By coincidence, I was searching yesterday for reputable papers to try to find if there are known links between antihistamines and suppression of the HPA axis. I found a reference to one paper, but couldn't access it, but that was the only one. When I have time, I will look again, but might not be for a while.
It's always worth checking the Patient Information Leaflet for anything that your doctor suggests taking - I've lost count of the times that GPs have prescribed me something that the Patient Information Leaflet tells me they shouldn't have prescribed. Unfortunately, they don't have the time to check. They pass that responsibility to pharmacists, but pharmacists are even busier than GPs these days, so they have no chance. It's up to the poor-old patient (who might be too ill to read the leaflet) to read the leaflet and understand what it says in order to protect themselves.
I decided to take it in the evening to assist with better sleep, which it did to an extent. I'm hoping the results aren't affect too much by that or stopping biotin 48hrs prior or the mad icy motorway journey stressing me out on the way there 😅 Cortisol machine should blow up by all accounts 🤣
dont know bloods but your symptoms are same as mine. i had/ have? diurnal cortisol issue & low dhea. crashed so hard i also lost body hair & had hypothermia - that was what made me realise it might be serious (at first i thought it was funny). adrenals crashed after nhs witheld hashis meds 6 yrs - might want to have thyroid panel done. now that i'm back on ndt adrenals seem to be improving
joydot I haven't read your old posts, so unclear if you are on treatment for adrenals. If not, be aware that both NDT and levothyroxine are contraindicated in patients with uncorrected adrenal insufficiency. You report low cortisol and low DHEA, so if you haven't seen an endo about this, please do. I don't have much faith in most endo's, but they are the route to getting adrenal problems managed. If "lost body hair" means underarm and pubic, that is a typical symptom of adrenal insufficiency in females, so needs following up (unfortunately, I cannot imagine many GPs knowing about that).
Ah I'm glad to hear things are on the up for you. Lots of harrowing stories of late diagnosis out there. Hope I can avoid that myself so doing what I can. Thyroid tests getting booked today.
gp did nhs thing & re-did test using 24 hr urine collection. came in v low but nhs acceptable & neatly solved the diurnal issue by pretending it away. no treatment for any of it. didnt matter what i pointed out.
i take ndt & have been taking modest amount of same for adrenal. one of the big players in thyroid issues recommends it.
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Cortisol deficiency (Addison's??)
Low cortisol/adrenal insufficiency
Cortisol help 
Please, help with cortisol
