Hi allJust recently got result from endo. Obviously it rules out Addisons which is good and I responded to the inj. The second blood draw was actually done 40 mins post administration but I'm assuming that wouldn't have affected the overall result too much. However I know my baseline blood cortisol is still low but as far as endos are concerned there's no treatment as I don't have Addisons.
I had previously done a saliva cortisol test with Regenerus Labs a couple of months ago which showed a dire cortisol output. ( established stage 3 HPA axis dysfunction)I'm aware that the blood test reflects what cortisol is in the serum and that saliva test is more indicative of what's actually happening at cellular level. I asked endo does this point towards a problem with my metabolism of cortisol but I could clearly see he wasn't particularly interested in explaining as Addisons has been ruled out. I'm not overweight and keep myself fairly active. I have been checking my blood sugars 4 times daily and they usually range between 5 -6 nmol/l.
Done recent Hba1c which was fine at 35 (>42).
Endo started me on 10mg T3 3 months ago (2x5mcgs daily) but I've found it difficult tolerating even this small dose .
I asked him could it be putting too much pressure on my adrenal output but he dismissed it and quickly said you don't have Addisons so basically "NO"
He actually wants me increase to 20mcgms daily over coming months and divide into 4 daily doses which is a hassle but willing to give it a go.
Any advice on way forward re my Cortisol would me much appreciated. I will repost my previous saliva cortisol test result. Many thanks in advance
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Since seeing endo ( private)a couple of weeks ago I have been following his advice re 4 divided doses of 2.5mcgms daily which is more tolerable as I had initially been taking 5mcgms X2 daily but I still need to give it a few more weeks before even thinking of increasing it again so will take increase at my own pace and see how it goes.
Unfortunately I had sent of a TFT sample to MMH 5 days prior to my endo appt in preparation but sample clotted so I had no up to date results to give him.
So he asked nurses at clinic to do bloods following my appt.
Fortunately I had not taken my thyroid meds prior to his appt as I thought there was a chance he may have done this. Timing not ideal as it was midday but nothing I could do about it so if anything I'm assuming my levels will be a false low....would that be correct??. I couldn't quite understand why he would suggest increasing before he had updated bloods at hand.
I'm aware it may be a subject of contention and debate on the forum but basically both he and psych have corresponded and agree that T3 is a better option for me as my hashimotos symptoms are largely brain related (though I do also have usual physical symptoms but which are perhaps not as debilitating as many folk on the forum) My main issues are severe depression and anxiety which I try very hard to manage on a daily basis. I obviously have problems with low cortisol which is exacerbating everything ( if possibly not the route cause of my symptoms). Very frustrated to be so unclear re treating my adrenals
I have been working on my vitamins over past few months. (D. B12 folate and ferritin)
Thanks to great recommendations from members on the forum all levels are now at least 70% percent in range which is good improvement.
I'm currently on 125mcg levo and 30mcg T3. I noticed improvement almost immediately but it was probably when my dose was about 20mcg that I felt significant improvement.
Hi Slowdragon Yes MMH sent me out another kit so I will keep it and use it before my next endo appt in January.
I take 10mcgms T3 in 4 divided doses of 2.5mcgms at 7am 12pm 5pm and 10pm and have been doing so for past 2 wks which is more tolerable
Prior to that I was taking it in 2 doses of 5mcgms.
I can't fathom why endo was quick to suggest dose increase to 20mcgms daily esp when my recent bloods were not at hand at the appt. I'm using my own instincts and what I know my body can tolerate and will increase very slowly by 2.5mcgs every couple of weeks.
I m really not sure how much I will b able to tolerate because I really do believe my tired old adrenals are having a big impact on my body so I really need to work on that. Endo obviously wasn't interested as I don't have Addisons ( I never thought for I minute that I had anyway) and knew it was down to AF. Very frustrating and know theres no quick fix or magic bullet so just have to keep plodding on. Thanks to great advice from yourself and other members I feel a bit more clued in about all this autoimmune stuff ( still an awful lot more to learn😀) and my vit levels have much improved with your recommendations.
Do you find taking T3 at bedtime helps with your sleep?
I'm aware of the importance of taking T4 on empty stomach but is it just as necessary with T3....just finding it difficult when taking it 4 times a day.
All required vits now with supplementation over past 4 months at least 70% through range . In fact I had to decrease vit d as it was slightly over range and will recheck in 2 mths as will probably need less now coming into winter
I have been taking nature provides sublingual b12 and Thorne b complex . My GP test was negative for PA though I understand it's definitely not 100% accurate. Symptoms like my nerve tingling and pins and needles have somewhat reduced so that's a good sign I'm going in right direction with b12
I have heard it mentioned on forum so willing to try it.
I suppose I have been holding off taking anything to support my adrenals until I had SST result and feedback from endo which proved unhelpful so yes now I need to move forward with my own trials. I'm unsure about trying adrenal glandulars as seems to be mixed views on forum.
I have been reading up on use of low dose naltroxene in chronic inflammatory disease ( as well as hashimotos I also have sjogre s and goodness knows what else )
Been reading positive PubMed articles on it but it's not well publicised or used in mainstream medicine ( unlicensed) My endo didn't seem to know much about it but said he would look into it for my next review in 3 months ( probably not🤔)
Has anyone had any experience with LDN? Any feedback would be much appreciated.
Given the results of your SST I would say that your adrenal glands are working, but they are too slow to get working properly first thing in the morning.
An adrenal cocktail first thing in the morning is a cheap and simple thing to try. You can try them at different times a day, and can take more than one a day if you get benefits from them. But it really is trial and error.
You say you have been taking it for over 2 years....have you found it beneficial regarding your health issues?
I had never heard of it until recently and have been reading up on LDN research trust. From what I've been reading it sounds like a very safe treatment with low side effect profile and safe to take with most medications.
I would be interested to hear of your experience with using it.
Hey, so the main reason I'm taking it is for ME/CFS. I also have thyroid antibodies but my TSH never got high for a hypothyroidism diagnosis. I can say LDN has had no effect on my thyroid antibody levels. However, I do feel it is beneficial to me so I keep taking it. It's hard to describe but I just overall felt a bit better, and notice if I don't take it for a few days.
The LDN Research Trust is a great site to get information. There's also an LDN facebook group (I can find the group name if you need it) and a good reddit group (r/LowDoseNaltrexone) if you want to read about more people's experience with it.
My opinion is that it is a safe medication to try - it has a long history of use and very rarely any long term side effects if you stop taking it. The side effects when you start taking it can be a bit rough, so I would try and do it in a relatively quiet few weeks for you. Following the "low and slow" advice is the way to minimise side effects - increase your dose by a small amount every one to two weeks. I did have side effects as I titrated up my dose (mainly insomnia, crazy dreams & gastro issues) but they went away after a few days each time. It seems everyone responds differently to it though, so my experience might not reflect yours!
If you go through Dickson's, you do have a phone consultation with a Dr so can discuss any questions with a professional then.
Happy to chat some more or feel free to DM about it. I know LDN is not commonly used here so always happy to share my experience with it 🙂
That's great to hear your experience of LDN and glad to hear it's having some even subtle benefits for you. I would certainly settle for that.I appreciate there's no magic bullet for our complex health conditions but I would be willing to try anything (within reason of course) and known to be safe if it could in any way even marginally help. I have hashimotos... (have all the typical physical symptoms but for me the most debilitating symptoms are depression anxiety and declining cognitive function which do not respond well to conventional drug treatment.
Started on T3 3 months ago but finding it difficult to increase my dose probably due to my dire morning cortisol levels but will keep trying with small split doses Have received some good advice today from forum members re improving my knackered adrenals so need to work on this issue. I
Also have sjogrens syndrome so thought LDN would be worth trying for my autoimmune conditions.
Yes I get the impression as you personally have experienced alot of people describe an overall sense of improved wellbeing to varying degrees.
Vivid dreams seem to b a common transient side effect and initial insomnia. Do you take your dose at night?
I would actually find it strange to experience "vivid dreams" as I can't remember the last time I went into a deep enough sleep to have dreams of any description😂
Did you start off with a liquid formula? I'm assuming until correct dose is established a liquid or sublingual form would be better so more scope to adjust doses as needed?
Yes I was considering arranging a consultation with Dicksons.
Great to hear your experience and appreciate your feedback
Yep, I take my dose at night. I think you can take it at any time of day, it's just whatever works for you.
Yeah I also started on a liquid formula - as you say, that's much easier to control the dose as you titrate up. I moved on to capsules when I reached 4.5mg dose because that works best for me, although they are slightly more expensive than the liquid. If you go via Dicksons, they will tell you about the different options.
Don't be too excited about the vivid dreams, some of mine were absolutely crazy! It was an insight into my mind I didn't need 🤣
Yes I'm certainly going to consider as it seems safe so can do no harm to try it.I enjoyed Ur comment re the dreams....really did give me a good giggle 🤣🤣🤣
I'd take this as good news - your adrenals are working, it's just that the HPA axis is a bit knackered and needs some help. Not surprising you're struggling to tolerate T3 raises doing the standard dosing.
So, for someone like yourself with very low morning cortisol only (midday is a bit low but not dire), there are three main options. The first would be licorice root, which can be usefl for people with low morning cortisol because it can help to raise it. That comes with a caveat that you need to watch your blood pressure carefully and only use for around 6 weeks at a time, and it's not suitable if you tend to have high or high-normal BP to begin with.
The other thing to think about would be Paul Robinson's CT3M method, which is designed mainly for people with that low morning cortisol. I've not tried it because my cortisol was really bad throughout the day so have needed hydrocortisone, but I know lots have had some success with CT3M. There seems to be some who respond badly to it, but I think that's maybe more where cortisol is very low across the board.
The third option is to take adrenal cortex extract (ACE) in the mornings to try and raise cortisol. A fair few on the forum use it, and it's quite safe to take. I tried it and had no issues - it just didn't work for me because I needed stronger support. Adrenavive is the main one available in the UK - Adrenavive II is the best to start with because it's cortex only (you want to avoid the whole glandular) and I think is 150mg, so easy to titrate up dose.
I think you've asked someone above about LDN as well - I've been taking this for the last 3 months, mainly for Ehlers-Danlos Syndrome. Some find it really reduces their thyroid antibodies and improves uptake of thyroid hormone. I've not found a huge difference yet, just subtle things like being able to handle a bit more exertion and recovering better. I don't think there's any evidence yet to show it directly affects cortisol, but given it works to reduce inflammation, it could help with some of the underlying issues contributing to a strained HPA axis.
Seven elevenThanks so much for your very helpful reply. Yes I guessed myself before SST result that thankfully it isn't addisons as I wud assume after all these yrs of this I wud b in the mortuary by now if it had been😀 good to know the sequence in which to try the things you mentioned. I had read about liquorice root but wasn't sure if that should be my first line strategy but you have helped clarify this.
Is there any particular liquorice product you would recommend?
Yes been reading Paul Robinson's CT3M too which is interesting and will look into that further.
Also read up on adrenavive but will hold off on that as a second line strategy and try liquorice root first as you have helpfully suggested.
As I previously mentioned my second blood draw (SST) was actually done 40 mins ( not 30) post injection. I realise it doesn't change anything in that I responded adequately to the inj but I'm just curious would response result have been lower if blood draw had been done at the actual 30 min interval( probably irrelevant anyway )
Are you aware if antidepressant use can influence a saliva cortisol result ( obviously I couldn't stop them in advance of test)
Re the LDN I have been reading Linda Elsegoods book and how it is a very safe treatment for use with chronic inflammatory conditions but can take 12-18 months to see meaningful reductions in antibody levels. I also have sjogre s and thought it may have been something to look further into. It can also help with cognition mood and dopamine ( goodness knows I could defo do with a bit of a dopamine surge to get going in the mornings😊)
Sorry for all the questions.
Your response has been extremely helpful and is much appreciated
When I've taken licorice, I've just used any - you can get capsules with the powder in it, and that's an easy way of gauging how much you're taking. It can be useful to also take some potassium while on licorice, as it can lower potassium levels and this can be a reason for elevated blood pressure. So BP is really important - need to make sure you've got a monitor at home, and I would stop at the first sign of headaches/head pressure. This site has some useful suggestions for how to use it: stopthethyroidmadness.com/l...
I don't think the extra 10 minutes for the injection would have made much difference, maybe slightly lower, but wouldn't have been enough to raise any alarm bells for the endo. I don't know about antidepressants but as far as I know, it wouldn't have an impact - it's mainly things like caffeine or stimulants.
Re LDN, definitely worth a try if you have Sjogrens as well - multiple autoimmune issues make you a good candidate. It does take time because you need to start very low and then work your way up to the full dose, and then it takes some months, as you say, to really start to see changes, but many do see small benefits early on. I get mine from Dickson's because they have a prescribing service, and I get the sublingual drops for better absorption.
Yes I'm continuing to read Linda Elsegoods book. I find it fascinating that she is in remission from her MS due to LDN treatment. Also quite a few reputable integrative/ functional practitioners (even Dr Lam) say it can be beneficial in autoimmune disease but that we shouldn't expect immediate results but some find their overall sense of mood and well being can improve in first month of treatment. It can be made in eye drop form so I wud be very curious to try it for my chronically dry eyes as I've tried nearly every eye drop known to mankind over past 30+ yrs with limited results. Whilst he didn't dismiss LDN
I'm not holding out much faith that endo will even look into it and I would not get on NHS anyway so I was thinking of arranging a telephone consultation with prescribing pharmacist at Dicksons as you have done yourself.
Aye I'm not aware of any endos who readily prescribe it. Private GPs who are open to different treatments are much more likely - the private thyroid GP I see does. The system at Dicksons is easy, you just book a phone appointment, and when you run out, you just fill out an online form or call them. The repeat prescription fee is £30, so it's around 120 for 3 months, but depends on dose. Some end up on as little as 2 instead of the 5mg, so it would last longer then.
I had similar saliva cortisol test to you & was told the SST “fine” with endocrinology saying no further action despite feeling dreadful. GP was also dismissive so did some research & have improved following some of the recommendations to support adrenals given by Dr Myhill in her books & website. I now feel so much better than this point last year.
That is good to hear that you have benefited from Dr Myhills protocol and very encouraging.Nice to hear fellow members experiences. Did you do the paleoketo diet she recommends or was it more her advice on supplements etc that you found beneficial?
I did the PK diet for around 10 weeks & then had a nightmarish time supporting elderly family in hospital /arranging funerals for many months so everything PK went out the window after 30hours sat at bedside of relative with delirium where the ward staff provided me with food, but all high carb. I’ve struggled to get back into it properly.
I also bought the supplements & I noticed an immediate improvement when I used hydrocortisone cream & pregnegalone. I’ve also tried adrenavive but find a whole capsule is too much for me. I’m not quite sure if I can combine them or if I should just use one method. I now don’t do the whole package all the time but take Q10 regularly & the biocare adult minerals.
Prior to all the above I had noticed having a rehydration drink (like dioralyte) would perk me up, so I do like the mineral mix (but not so keen on the taste)
Sounds like you have had a very stressful time over past while. No wonder your adrenals took a hit!!Good to hear you have found some symptom relief with Dr Myhills protocol.
I'm finding it hard to tolerate starting T3 even at low dose of 10mg in 4 divided doses...I don't doubt that's down to my low cortisol and putting my tired adrenals under more pressure but as you previously mentioned endos don't want to hear about it unless it's Addisons.
Hope you don't mind me asking you a few more questions 🤔
Can I ask you when you mentioned about hydrocortisone cream....do you mean topical application can support adrenals?? Is it prescription only?
Does prenegalone help raise or lower cortisol?? Did u get a hormone profile test to determine your levels? I assume that is a prescription only med???
I haven't had my sex hormones checked. I'm 6 yrs postmenopause and never been on HRT. I'm not sure I could cope with anymore testing as it's all so overwhelming trying to make sense of how I'm feeling.
I sometimes feel like my cortisol is high when it is actually very low as per above saliva results it's that wired hyped up feeling but just can't make sense of it as my daytime symptoms seem opposite to what I would expect with my low cortisol if that makes any sense???
When you mention Dr Myhills supplement package what do you mean? You mentioned the biocare minerals and Q10. Is that "the package"
I'm sorry for all the questions and forgive my long winded post. I'm just at a loss at the mo re these knackered old adrenals😫
No problem asking more questions. The low cortisol started before all the stress, unless you count the cat breaking his leg & being confined to cage/ no jumping for 12 weeks.
I too am post menopause of around 6 years! Had one year of HRT 7years ago but it really didn’t change anything for me so stopped. I got my info on hydrocortisone from Sarah Myhill’s book “diagnosis and treatment of chronic fatigue syndrome and Myalgic Encephalitis” on page 105 she says if tests(like your graph photo) show a deficiency of cortisol it may be worth trying 1% hydrocortisone cream using 1/2-1ml of cream which has no side effects and doesn’t suppress adrenal glands. In her thyroid book she says up to 2ml. Pregnegalone helps increase cortisol . I bought the mitochondrial package that Dr M sells but don’t use all of it these days.
She has more in her book The underactive thyroid but I’m not sure what thyroid UK’s view of it is.
I buy a bite relief cream online which is just 1% HC (have seen the same make in B&M) & would use a bit more on the days when it seemed no end to the stressors.
Humanbean has vast cortisol knowledge. I can recommend the adrenal cocktails, they help the electrolyte balance which helps the adrenals.
I see you have Paul Robinsons book CT3M. I believe he explains how to use t3 in a way that help recovery of adrenal fatigue. I haven’t been able to get T3 as convert well enough for NHS
Thanks for your helpful info. I have not got any on Dr Myhills books but have heard of her methods. Don't think my book shelf could hold any more books on autoimmune stuff. It's all a minefield. The more I read the more confused I get😀
Her protocol sounds interesting and will read up on it.
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