AI is a very new subject for me and looking to speak to people with similar issue. In May 23 I started to have bowel issues and in August 2023 I was diagnosed with Lymphatic colitis where I have been put on steroids for 12 weeks (budesonide 9mg to be exact)
Since 2023 I have experience tiredness, palpitations, exhaustion, skin issue, mental issue (low mood), lack of tolerance for cold. Eventually I have seen endocrinologist in December who found that my cortisol levels very low and that I have adrenal supression, the doctor said this is due to me being on Budesonide for a long time and stopped suddenly without slow withdrawals ( I wasn't advices by of any issue this might bring I was told to stop).
In December 23 cortisol levels were 107, I have been put on hydrosticosne 10mg a day. I had my life back I started to feel a lot better, all the issues I experience went away. At the begining of January I had short syntachen test where my levels were:
9am - 207
9.30 syntachen injection
10am -650
My consultant suggested I slowly withdraw the medication over 10 days and let him now how I feels he suggested that my adrenal gland are capable of producing cortisol so hopefully this would all sorted.
I'm a week after stopping the hydrocortisone and I feel dreadful, I have heating on full sit with blanket, hat and ugg boots to keep me warm. I feel exhausted and keep drinking coffee to get me through the day, need naps that even since may I avoided somehow this time I'm a vegetable.
I will get in touch with the consultant tomorrow for an advice however I wonder if anyone have been in similar position? Any suggestions?
Thank you in advance.
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Kamsi86
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I'm wondering if they have tested your ACTH levels as the SS test shows your adrenals are capable but they need to be give the right signal to actually do this... the SS test is only really any good for showing adrenal failure as the amount of ACTH they give you is generally enough to get even the most fatigued adrenals to react
Oh dear, another doctor that doesn't know what he's testing for! This test is not just to find out if your adrenals are capable of producing adequate cortisol, it's to find out why they aren't. So, if it's shown that they are capable, then the reason they aren't must be to do with the pituitary...
The pituitary produces the hormone Synatchen (ATCH for short) which stimulates the adrenals to make cortisol. Without that stimulus they can't do it. So, your ATCH level should have been measured before starting. And if it's low, but cortisol production increases after the ATCH injection, then that is why your adrenals aren't working properly: the pituitary is not functioning correctly by producing adequate ATCH.
Have you had your thyroid levels tested: TSH, FT4, FT3? TSH (Thyroid Stimulating Hormone) is also made by the pituitary. If your pituitary is not functioning well, then your TSH could be low, and therefore your could be hypo - i.e. low levels of thyroid hormones T4 and T3 - which would most definitely cause the symptoms you mention above. I'm surprised they tested your adrenals without testing the thyroid.
Hi thank you for coming back. I had my thyroid test done and the levels are below doctor said they are normal as per attached. He also said to let him know how I feel. If I feel like before the hydrocortisone he will do long syntachen test.
OK, well, pity they didn't do the FT3, but the TSH and FT4 are not what I would call 'normal' (euthyroid). But, then, when I doctors says 'normal', all he means is that they are somewhere within the range. Not necessarily euthyroid.
A euthyroid TSH is around 1, and over two, it means your thyroid is struggling. But, what time of day was the blood draw for this test? TSH varies throughout the day.
A euthyroid FT4 would be around mid-range. Yours is only 29.09% through the ranges, which is much too low, and far from 'normal'. And the TSH level does not correspond to that - should be higher. So, I think it's pretty certain there is something going on with your pituitary.
I'm not sure if I fully understand the percentage and why it's too low.
First of all you have to understand that a range is just a rough guide. It is made up of the average levels of the local population, the levels other, presumably healthy people have. But, there's no guarantee that those people are healthy, of course. So, the tops an bottoms of ranges are suspect and not guaranteed euthyroid. The majority of presumed euthyroid people have a level around 50% through the range. We use percentages because ranges differ from lab to lab - there are no universal ranges due to the way they're arrived at.
So, if the 'normal' (euthyroid) level is around 50% though the range, yours is very low and suggests that your thyroid is struggling for some reason.
And, the obvious reason for that is that the thyroid is not getting the stimulus it needs to make thyroid hormone through TSH - Thyroid Stimulating Hormone. It cannot make hormone without it.
With an FT4 that low, we would expect the TSH to be higher than yours is, to give the thyroid that extra push to make more T4.
And, as TSH is made by the pituitary - plus the fact that your ATCH, which is also a pituitary hormone, is also more than likely low - we have to consider that the problem stems from the pituitary itself.
So, the upshot is that you more than likely have what we call Secondary Hypo, where the problem lies with the pituitary rather than the thyroid itself. We already know that you don't have an adrenal problem because your adrenals reacted to stimulus. So, you have Secondary hypoadrenalism.
The problem is that the majority of doctors - especially GPs - have never even heard of Secondary Hypo/Adrenalism, let alone be able to recognise and treat it. So, you need an endo that specialises in the pituitary. They are rare, but they do exist. You could try asking in a new post for recommendations. But, when approaching your GP for the referral, you need to know what you're talking about, so do your homework. All the info is out there, on the net, you just need to look for it.
I don't have first-hand experience of pituitary problems. My hypo is caused by Ord's, which is Primary Hypo. But, I've read a lot about it on here from people that have it. And it picqued my curiosity, so I've been reading further. Doctors, those that have heard of it, think it's rare, so never bother to look for it, and don't even learn about it in med school. I can assure them that it's not as rare as all that!
I see what do you mean now. I'm currently under private endocrinologist in UK in Leeds. I got back to him today with everything I have been experiencing after stopping hydrocortisone week ago. Just waiting for his suggestion. It was this consultant who said my thyroid is normal. I wonder if should look for another consultant.
Well, before doing that - because that is never going to be easy, good endos don't grow on trees! - try implanting in his brain the idea that you could have a pituitary problem that is affecting your TSH, which should be higher, given the level of your FT4.
Thing is, you see, if you don't see something regularly, you tend to miss it when you do. He says your thyroid is 'normal' because both TSH and FT4 are within the stupid range. And doctors rely too heavily on ranges, without considering what the level within the range and the correlation between the different test results, and all that implies. They just give it a quick glance, all in-range so must be ok. It's not even thinking outside the box they need to do, it's all in the box. They just need to think about it more deeply. And, sometimes if we point these things out to them, you get the 'oh, yes...' reaction.
My consultant suggested I slowly withdraw the medication over 10 days and let him now how I feels he suggested that my adrenal gland are capable of producing cortisol so hopefully this would all sorted.
I have no personal experience of HC but everything I've read, and the reported experiences from the few people I know who have needed HC for more than about 8 weeks, suggests that the tapering period has to be fairly slow and steady - along the lines of 2.5 mg per day for X amount of time (sorry I don't recall the X). (Maybe along the lines of adding in T3 i.e. slow and steady until we find the correct amount for us.
If I feel like before the hydrocortisone he will do long syntachen test.
I'm sorry you feel so dreadful - do push for the long test.
I just meant that tapering off (in this instance your HC) is similar/analogous to when people start to take T3 i.e. slow and steady is the recommended way to go. (I'm sorry if that's a bit of a confusing analogy because you are reducing something versus adding something).
Having had experience with very low cortisol levels and taking Hydrocortisone, I would say one week is NO way long enough to reduce from 10 mg a day to nothing. When I reduced, I did 1-2 mg a week, and when I got down to 4 mg I started taking Adrenal cortex by Thorne which I am currently on.
As well as cleaning up my diet, doing juicing, plant based and taking a whole host of supplements. ( its important to eat every two hours to support the adrenals, like fruit or steamed potatoes ).
I don't have anything to do with my doctor now as they just aren't trained properly either in adrenal or thyroid health.
Hi bagpuss, and please excuse me Kamsi, could you tell me more about the adrenals and eating please? Thyroid medication has eased fatigue but my energy levels are far below others' my age and I keep wondering about cortisol and adrenal glands. I tend to eat only 3 meals a day, sometimes just 2, and rarely snack at all in between and wonder if I should try eating in between as you suggest, though it will be hard to do as I shall feel guilty and ashamed.
Your first step is to buy a 'saliva cortisol test' to see exactly where your adrenals are at, they post it to you and you do it at home, following their guidelines. When you get the results post them on here on a new thread. You can buy it here, medichecks.com/products/str...
You may well have a pituitary problem - your thyroid levels would suggest that too. But, as others have said, you also had the double whammy of very poor aftercare and not being given any guidance on how to stop the steroid. By 3 months, your adrenals would have been entirely dependent on it, so to suddenly stop it is very dangerous and frankly negligent on their part, because it risks causing an adrenal crisis. Definitely try to get further testing around ACTH and your pituitary function because that might be the key for you - your symptoms sit across both adrenal and thyroid. I was on hydrocortisone (full replacement dose) for 6 months and have just weaned over the space of a few weeks - only reason I was able to do that so quickly was because I was pairing it with starting T3 only and CT3M method, so cortisol had another source of support before I withdrew the HC.
Hey seveneleven, how are you feeling now? Do you think taking hydro helped with tolerating T3 only? I've tried to go on more T3 less Armour and I'm getting intolerance and horrible symptoms including fainting. My salivary cortisol was 7% low in the morning in October, redoing a new panel this weekend. My endo wants me on hydro for 2 months or so and to go back to either Armour only or t3...jury is still out. My blood serum cortisol is high normal.
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