So my GP have finally accepted I have adrenal fatigue. I was prescribed 5mg of hydrocortisone every morning until I see the endo in mid march.
My question is I'm already on LDN (private) I haven't disclosed that to them. I really struggle to get out of bed , still so tried and often have to take naps, but much better than I was before.
What should I do ? Shall I carry on with LDN ?
What are the side effects of hydrocortisone? Will this damage/effect me later in life?
I have no idea on what to do.
I'm currently on 4ml of LDN split twice
100mg thyrovanz split twice
and 25mg of t3 at 5am.
Below are my recent blood results. 26 Nov 21
8.30am cortisol 166 (133-556)
Ferritin 318 (13-150)
Folate 16.9 (3.8-9999)
T4 5.6 (10.5-24.5)
Tsh 0.01 ( 0.27-4.2)
Thyroid peroxidase 21 ( 0-50)
Vit d 85
B12 2000 ( 197-779)
I would really appreciate any advice and suggestion
Thank you
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Maya_83
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What are the side effects of hydrocortisone? Will this damage/effect me later in life?
The only side-effect of HC I know of is water-retention. But, on such a low dose, it might not affect you at all.
You need to take HC first thing in the morning, when the adrenals have the greatest need of a helping hand - don't know if your doctor told you that? So, you will need to take your thyroid hormone later in the day - at least two hours away from HC.
Have you been diagnosed with anything specific? Addison's? Adrenal Fatigue? Pituitary problem? It's important to know what exactly the problem is, because you need to know if you can hope to come off HC one day, or if you are on it for life. That will affect the timing of your doses.
Apart from that, it shouldn't affect you in later life. I was diagnosed with Adrenal Fatigue about ten years ago, or more - yes, I know most doctors dont believe it exists, but the one I saw had it himself. I was on it for about two years and then slowly weaned off it. And, now I'm fine.
No, I haven't been diagnosed with anything like what you mentioned. But I was diagnosed with CFS 4 years ago and hypothyroidism 14 years. I kept complaining to docs how I couldn't get out of bed or really really struggled as well as during the day.
Did your adrenals work fine after you came off HC?
Always test as early as possible in morning before eating or drinking anything other than water
Day before test split T3 into 3 smaller doses, taking last 1/3rd approx 8-12 hours before test
Ft4 is very low in test above
What vitamin supplements are you currently taking
Do you have autoimmune thyroid disease also called Hashimoto’s
Assuming yes, are you on absolutely strictly gluten free diet
If not get coeliac blood test done before considering trial on strictly gluten free
As far as I know, "adrenal insufficiency" aka Addison´s disease refers to a condition where the adrenal glands shut down and you will need to take HC for the rest of your life. But I have not heard of such a low dose as 5 mg daily to treat adrenal insufficiency. A full replacement dose is more like 20-25 mg daily spread out throughout the day. Many seem to take the biggest dose (10 mg) in the morning and then 5 mg at noon, mid-afternoon and at night. Some also take 2.5 mg at bedtime. But, 5 mg daily does not sound enough to treat true adrenal insufficiency. It sounds more like the treatment for adrenal fatigue (a diagnosis only accepted by some doctors). Some of the doctors treating AF believe that a full replacement dose of HC will shut your adrenal glands down, so they only recommend a smaller dose in the morning when the adrenal glands are "busiest" to support them back to health. The treatment for AF is not automatically life-long and many doctors treating it say that treatment should be short-term. AF can be mild or strong depending on how long you have had the condition. However, the adrenal glands are not completely dysfunctional according to this theory, only tired after years of working very hard. Many functional doctors say that AF is common in people who have had untreated or undertreated hypothyroidism for a long time. But, when you have adrenal insufficiency, your adrenal glands won´t start working again as they cannot produce cortisol. It´s like end-stage autoimmune hypothyroidism where your thyroid gland is no longer producing hormones...treatment is life-long. Also, I have never heard of a GP treating adrenal insufficiency...as far as I know, those patients should be referred to an endocrinologist.
Are you sure you really have adrenal insufficiency, and not "only" adrenal fatigue?
I think you're right, & I have no idea what the diagnosis is only that the cortisol blood test was low and Gp got advice from endocrinologist. He prescribed 10mg but told me to take 5mg every morning until I see her mid march.
I've been struggling for years and cortisol has always been low. I was lucky this locum gp did what no doctors did in the last 4 year's.
So will the 5mg help me kick start the day? I don't want to be dependent on HC for long.
Well it might. I know that adrenal fatigue is a controversial diagnosis that most conventional doctors won´t recognise, but the whole idea in functional medicine is that tired adrenal glands could benefit from short-term treatment with either HC or Medrol (the latter in people with hypertension and/or fluid retention as Medrol won´t affect either). The idea is to support the adrenal glands so that they can recover. Adrenal fatigue or exhaustion as it is sometimes called is not really considred a disease and many doctors treating it recommend short-term treatment for that reason. Adrenal insufficiency/Addison´s disease on the other hand is a disease where your adrenal glands are unable to produce enough cortisol and requires life-long treatment. Not many endos will diagnose or treat adrenal fatigue as they are told it doesn´t exist.
I take 25 mcg of hydrocortisone a day for all day low cortisol, and LDN. They are fine taken together.
Like the previous comment, 5 mcg is far too low to really make any difference, 10 mcg in one dose in the morning would more likely help.
Did you do a private four point saliva test as well?
This would give you a more accurate reading of what your cortisol levels are doing throughout the day (taken 4 times a day ), rather than just one test that the doctor does.
It might be, depending on the saliva test that you dont need HC and would manage on adrenal cortex instead, which is gentler on the body.
Hi , Yes I did a saliva test ( results were posted here sometime ago) and all 4 tests came back really low. It really reflected on how I feel during the day. I then started on LDN which made a small difference.
Can I start with 5mg for a week or so then increase to 10mg maybe ?
Should I take LDN and HC together in the morning ? I take 2.5ml of LDN in the morning.
Sorry for all the questions, I'm very confused and nervous to start this.
Of course you can start on 5 mcg and see how you go, and you can take them at the same time if you want. Ideally you would want to take the HC early before getting up, Cortisol levels should naturally start to rise at around 4am , so the earlier you take HC the better. ( perhaps 5.15 when you take your T3 )
This is what I take for my all day low cortisol to give an idea,
( everyone is different depending on their four point saliva test.)
Unfortunately I have all night low cortisol as well as the day. I don't sleep at all unless I take it in the night, which is a real pain...I've been taking it a year now, I have much more energy as long as a pace myself and don't over do it.
Never had mood swings on it, but in the beginning the low cortisol symptoms made me very emotional, dizzy and fragile.
I have lost weight, I'm careful what I eat. ( I now weigh 8 stone, I'm little )
No dairy or processed food. Lots of fruit and vegetables.
I'm also gently cleaning my liver with celery juice first thing and sprinkling dulse seaweed on my food every other day to cleanse my liver of heavy metals.
From what Ive read you only put weight on if your not on enough thyroid meds.
over the years by using their search option to learn how other people in the same circumstances cope.
Like you, I really didn't want to go on it, but in the end after trying lots of other things its was the only thing that gave me my life back, (as well as T3).
I tried recently to try gently to cut down, but I felt terrible and couldn't sleep, so I realised my adrenals need more time. I look forward to coming off one day.
I self medicate with hydrocortisone cream, because I was unable to get any help elsewhere.
So LDN alone wasn't enough for you? How much are you on?
I'm tiny too and recently lost alot of weight unexpectedly. I was worried HC might make me lose more. I was under medicated most of my life and never put on extra weight which I found bizarre.
I've heard lots about celery juicing but never had the energy or motivation to start doing it.
I'm know how hard it is to source out meds that you require . I think I was just luck with this gp to actually do something about it.
A lot of people lose weight when their cortisol is very low, mainly because we lose muscle too, but not everyone.I was really hoping the LDN would be the savor, I'm currently up to 1.5. When I try to increase I get adrenaline surges. But It does make me feel a little better during the day though.
I have adrenal insufficiency following surgery for a pituitary tumour. Do you know what has caused yours? It can be from long term steroid use for another conditions but often they aren't sure of the cause. 5mgs is a very low dose, with adrenal insufficiency (AI) you need take some Hydrocortisone throughout the day. Your result of 116 is low for that time of day, the reference range is given for the whole day. Cortisol is at it's highest first thing in the morning & then drops through the day, cortisol should be between 350-550nmol/Ls around 8-9am. Oestrogen, HRT & Biotin can give an elevated result so if you are on them your cortisol may be lower still. If you are on HC due to AI then you are just replacing what you don't make, so the same as people who make their own cortisol so side effects are very small & by taking it will help you later in life rather than causing issues. The fact that you are struggling to get out of bed shows that your cortisol levels are very low. I'm happy to answer any other questions you may have as I've had the condition for over 6 years now.
HiMy cortisol was very similar to yours when tested, I also had a 24hr urine cortisol test and that was very low but in range too. A private endocrinologist did these and even very low in range he considered them normal .
I then went on test saliva cortisol myself and that too was bottom of the range.
By this point I realised my FT3 level was very low 6% and I needed T3 in some form.
I tried T3 twice, it went really badly, I then tried thyrogold and got a very brief but positive response such a big response it confirmed I needed T3, T4 meds never made me feel like that ever.
I was diagnosed with m.e over 30 years ago, I 100% believed I had both m.e and hypothyroidism and according to doctors I was only hypothyroid because I no longer had my thyroid, lost due to a massive goitre.
I’ll stop there its too long a story but to sum it up the day I felt that thyrogold it changed everything I believed in all these years, it must of been the T3 in it. On day 3 of taking it an hour after I took it felt like I literally woke up, my brain cleared, I could think, I felt like I was coming back to life for the first time in over 30 years. I cant explain just how profound it was realising thats always been low T3, basically low thyroid.
Ive tried many things over the years and nothing else made feel like that.
The problem was I couldnt get the positive effects to last nor raise meds any higher with out a bad reaction, so I knew I was missing something. That something was low cortisol and low serum iron.
Im convinced I never had m.e and I went on to find I have Hashimotos and have done for a very long time. I was always told my thyroid was fine even when I had a huge goitre.
I found Paul Robinsons books on T3 and he has a way of improving cortisol called CT3M, its taking T3/ndt in the cortisol production window which is in the 4 hours before you wake up.
I have a ways to go yet Im still very hypo but Ive managed to get my very low cortisol up to around 60-70 % through rage and thats only from taking a small amount of ndt. Ive not done anything else to raise cortisol.
The ndt isnt working yet and wont until my serum iron is much better but it is helping to keep my cortisol level up so at least I dont have to think about that any more.
Optimal nutrients are needed for any thyroid meds to work any T3/ndt is especially difficult if your cortisol and serum iron are too low.
You see ferritin mentioned a lot on here but serum iron is crucial especially if youre not responding to T3 or having a bad reaction.
You need tsh ft4 and ft3 testing as well as the full iron panel its only the way you can see whats going on.
Paul Robinsons books are excellent, Recovery with T3 and the CT3M handbook, he explains everything , highly recommend you check his books website and fb page.
CT3M sounds complicated to start but its not just taking T3/ndt sometime in the 4 hours before you get up will raise cortisol.
Ive tried several different times and every one has improved my cortisol and you can see how it responds to different times. Im currently taking 1/2 ndt at 5 am but thats only because my husband has his alarm set then so only one alarm to set but I can easily change it.
There could be many causes of cfs/m.e and fibro but from my experience and the amount of times Ive read of other people in the same position as me, I believe for many of us its hypothyroidism.
Im now taking ndt as I wanted an exact amount of hormone that wasnt in thyrogold as good as it was. I have tried Thyrovanz and I felt awful on it.
According to the Thyrovanz users fb page its no longer working and theyre no longer recommending it as too many people have become unwell.
Dont accept a diagnosis of cfs with out checking thyroid and nutrient levels properly and then if you post results with ranges on here and Im sure someone will help.
I'm a huge fan of Paul Robinson, he has helped me so much in the last year with my health. It was actually him who suggested I do a saliva test as that's what he suspected was going on with me.
I'm also on ct3m taking 25mg of t3 at 5.15am. But Paul said it wasn't raising my cortisol levels at all as it was at the bottom of range and suggested I try LDN. It's somehow worked but I think I need additional help.
Thyrovanz has taken away the daily headaches I used to suffer for a long time until I was stable of 50mg split twice. I know alot of users have said it's not working on them anymore after the formula changed but it seems to be ok with me, Thank god.
I self inject with b12 every week. (PR)
Take high vit d
All my vitamins and minerals are well wotjin range as I supplement.
Which NDT are you taking?
Also how many times and what times are you taking NDT for ct3m? Maybe I can change times and use NDT and see if anything changes.
If you haven't had a stim test yet, you are in the minority to have HC prescribed for adrenal insufficiency as it is unusual for a GP to recognise this condition without proof of pituitary/adrenal dysfunction.
Many members (including myself) have suffered years of adrenal insufficiencies (insufficient hormone levels and not ‘Adrenal Insufficiency’) that was simply ignored by doctors. At various times mine were actually below range, but eventually improved when aged 52 years old I added T3 to Levo and learnt how to support adrenals with adaptogens.
If there is an ongoing pituitary/adrenal problem then 5mg HC isn’t going to be nearly enough but if the HC is to aid adrenal recovery & encourage better function then small doses are good.
HC (corticosteroid) is a bio-identical cortisol replacement (glucocorticoid) so I wouldn’t think LDN will be contra-indicated as its the opioid steroids that are affected. The opioids don’t affect cortisol either.
I agree with bagpuss61 that if there is no diagnosis of pituitary/adrenal failure then doing a saliva 24 hour test and using the appropriate supplements may bring the same or more benefits. Alternatively if you are waiting to see an endo for testing, it may be better just to wait because any meds/sups risk skewing results.
As you are doing CT3M, if this were me I would take fist dose of NDT & HC in the 4 hour window before waking, and LDN at bedtime.
When used to encourage improved adrenal function HC needs to be morning dosed emulating the circadian patterns highest level as daytime multi-dosing risks shutting adrenals down, (altering ACTH response). You are on a small dose, possibly raising to 10mg. Others may say it isn’t enough but Dr Peatfield’s protocol actually included doses starting at 2.5 mg up to 20mg hydrocortisone for adrenal fatigue.
The LDN can be taken any time and many find it beneficial at bed time as most endorphin production takes place during the night. However, if it affects your sleep then take earlier in the day.
Remember LDN isn’t a panacea for all and doesn’t help some people. Even Paul Robinson states LDN as unpredictable and not a definite way in helping cortisol (or Hashi). If you have medicated it for some time and not felt improvement, it may be time to taper off anyway which might simplify the NDT & HC protocol for your body, ie knowing what changes are bought about by what.
The concept of low T3 on a cellular level isn’t widely understood/accepted by the wider medical community but a huge consideration in Paul Robinsons protocol, and essential when CT3M is used for treating ME/CFS. There may be a chance that Thyrovanz isn’t providing a lot extra T3 on top of the 25mcg you are taking early morning to see you right through the day. Do you know your FT3 levels? Have you thought of switching meds to include higher levels of T3?
Ferritin is elevated but being an acute inflammation marker can be very misrepresentational of actual iron levels, ie it is possible to be iron deficient in the presence of elevated ferritin. Have you had an iron panel? Have you had a CBC?
VitB12 is better kept inline with folate. You are self injecting VitB12 so I would supplement folate (methyl version) to bring levels higher.
Have you had TGAb tested?
Cortisol under-range makes more sense for endo prescribing HC until your consultation in March. If you are worried about starting HC, then don’t as its only a few weeks until you see endo who will most likely want to do stim test’s, etc anyway.
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