Hello everyone, and very highest hopes for the new year, in every way❤️
My last few months have been very trying, and I’ll try to keep it short, but pretty much all the helpful advice I have ever had came from this forum, and I would be grateful for any thoughts before I carry the battle on to 2019.
I became very ill at the end of 2016. Hospital endo diagnosed subclinical hyper because my tsh was so low, but more knowledgeable people here suggested central hypo as t3 and t4 also bottom of their respective ranges. Found that this is often caused by a history of serious obstetric haemorrhage, which I’ve had-tried thyroxine, huge improvement. Asked for nhs second opinion, second opiner just said tough, he agreed with the first one, and refused tests. I went to a private one who prescribed Levo, nhs one then tried to overrule him!
I would be much happier to have nothing more to do with them, except that I have constant (and very depressing) nausea and abdominal pain, which I think may be because I also have secondary hypoadrenalism as well, and my adrenal system is not coping. Dr P thought that too.
My question now is, can you buy oral steroids without a prescription? I’ve now been too ill to work for two years so more private medicine is not an option
Xx all thanks, Ginny
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Ginny52
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Please please, please don't try & get hold of Hydrocortisone to help, the only way that you should get hydrocortisone is via an endo who is experienced with pituitary/adrenal issues. You will end up with far more problems than you have now, taking steroids causes osteoporosis but worse than that, use of steroids will shut your adrenal glands down completely so that you are then dependent on steroids to live - it's not worth the risk! I have adrenal insufficiency due to having a pituitary tumour, which when removed stopped me producing the necessary hormone to make cortisol. Now three years down the line I still need the steroids (hydrocortisone) & my adrenal glands have stopped working so I need Hydrocortisone in order to live. I have to carry an emergency injection with me all the time & take hydrocortisone regularly throughout the day otherwise i would die. I am registered with the ambulance service in case of emergency. One thing that jumped out at me is that you had a haemorrhage after childbirth - have you heard about Sheehans syndrome? It can affect the pituitary. You need to find an Endo who specialises in pituitary/adrenal issues, if you call the Pituitary Foundation they will be able to point you towards an Endo who is, many of them have no experience as you have already foond out!
It was really just an idea born of desperation- I can’t believe the endo I’m going to, at a London teaching hospital, has been as awful as he has, up to and including trying to undo the prescriptions of better men. I feel very angry about the letter to my gp in which he referred to other consultants’ prescriptions as self-medicating, and I suppose I have to make a complaint or I will be stuck with this label. Possibly he could be made to perform adequate tests, but I don’t really want him as my doctor at all in those circumstances. Yes, Sheehans is what I suspect, and I have spoken to the Pituitary Foundation, who suggested someone who looks promising, but more money would be hard. The one I was thinking of has an nhs practice too, and maybe he would take me on to his list if I paid for initial tests- the last one refused mri and provocative testing. I don’t think that’s right, but feel at my wits end. Two years unable to work has been very bad, and I’m worried t death about supporting my family. Xx
Pauline, whist I agree with you that one shouldn't self-treat with hydrocortisone, it won't shut your adrenals down if it's used correctly. I took it for about two years, and was able to successfully come off it. The thing is, it's shouldn't be dosed throughout the day, like most doctors do it. Two doses in the morning, and nothing after 1 pm. That way, it won't shut the adrenals down. I'm just saying this so that other people aren't scared to take it - prescribed by a doctor, of course - if they need it.
Thank you so much. I just need to feel I have some options, because I do feel desperate. Do you think pregnenolone might help?
I feel as if I’m wobbling along a tightrope between unending pain and nausea and sleeping round the clock shivering under a pile of coats- my quality of life is non existent and hope seems to be vanishing xxxxxxxx
I don't think it did anything for me. But I didn't take it for very long. My doctor at that time prescribed pregnenolone, hydrocortisol and DHEA all at the same time! A bit of over-kill, I think! The DHEA just brought me out in acne, so I had to stop it.
Sounds to me as if you're under-medicated for you hypo. Do you have any blood test results to post?
dear grey, I know I am- I was doing really well with t3 and t4 at the top end of their respective ranges, but the horrible nhs endo wrote to my gp and told him that Levo should be reduced from 75 to 50 and then I should be ‘weaned off’ as I don’t actually need it at all. Hello hell. The nhs advocate I’m talking to says I can challenge this, because 75 was prescribed by a senior private one, but I know I’m not able to cope, I think because of secondary hypoadrenalism, so it’s one kind of hell or another x
Oh dear. And what did your GP say? Does he not have more sense than the endo? Honestly, these endos are a b menace! So, if you want to self-treat with something, do it with thyroid hormone! For one thing, it's easier to deal with.
I’m scared of steroids anyway- one interesting thing though-Dr P, who I know recommends low dosage of hc, thought I was deficient. I do think mainstream medicine prescribes over large doses. Maybe I should make I phone appointment and talk to him about it?
This particular endo is very passive aggressive, and I think he’s taken against me as a self diagnoser, but if I waited for them I’d be dead first.
My poor gp. I haven’t told him about this mess yet. I have an appointment on the 9th I think, but I’m not sure I’m up to it. He was cross with me anyway for persuading an SpR to give me 100 mls of hc to see if the pain would stop-but IT DID!
I can’t really expect him to believe me rather than dr snakeinthegrass, but he must remember how ill I was before I found Levo would fix it- I even asked him for a hug one day, I felt so bloody awful!
It’s a horrible thought that there could be a lot of people with central hypothyroidism who are never diagnosed, because if it’s the tsh that’s deficient and they won’t do any other tests then that is what happens.
But the would give you the benefit of the doubt and a trial of thyroxine-and presumably take your word for it if you said you were better- what use is a doctor who doesn’t believe the patient’s account of his/her symptoms?
I really don't know - I'm not that old! lol But, I am 73, and I'm pretty certain I've been hypo since I was about 8. And was never tested for thyroid until I was 55. And all that time, I was going to different doctors with classic hypo symptoms, and just told things like 'you have to learn to live with it', 'you should see a psychiatrist' and the classic 'eat less and exercise more'! No-one really believed me. And I didn't get any help at all, not even with the symptoms.
If it wasn’t for thyroid Uk, I would never have worked out what had happened to me either, and if it wasn’t for the internet I’d have gone to my grave not knowing- and I still apparently have to convince a ‘real’ one about the cortisol part. And we are probably lucky! I feel very sad for people who don’t make it this far.
If you can think of a way forward for me, I’ll love you even more than I do already!💫
What you need to do is convince your doctor to reinstate your levo at 75 mcg - if that's what you felt well on. You need to tell him how bad you've felt since that ignorant endo reduced your dose. It probably won't be easy, but you need to try.
Yes. I think I can do that by making a complaint-nhs advocate says an attempt by a second consultant to overrule the first would be appealable. But it’s such a horrible mess and I just want to be diagnosed and treated. I don’t like or respect the second one enough to want him as my doctor now, and there’s still all the stuff about them refusing to do tests etc- I would like to have no more dealings with them, but I think I probably need the hc to not feel sick etc on the Levo x
If you don't trust your doctors enough to treat you properly for hypo, you cannot take the risk of them knowing how to treat you with HC. As PaulineS says, it can shut your adrenals down for good if the doctor doesn't use it correctly. And, if you don't know much about it, it's not a good idea to self-treat with HC - you need constant testing. Not just of the cortisol, but - if my memory serves me well - of potassium, to make sure that doesn't go too low. HC causes terrible water-retention, and you would probably also need to take diuretics. It's really not just as simple as popping a pill.
So, do try and get your dose of levo right before thinking about anything else. I know it's a mess, and it's not easy. But, there is no easy way out, I'm afraid.
I carry an injection of HC with me all the time that I need to take in an emergency, it comes as a glass vial, a syringe & a needle, I have to draw it up & give it immediately to stop me going into an adrenal crisis as I don't make my own cortisol. It's a huge dose!
hi , i may undergo oopherectomy with bilateral adrenectomy for hormone problems - can you pls suggest a good surgeon in uk for adrenelctomy and hydrocortisone on a daily basis post surgery may cause eye pain ?-what happens to pregnenolone levels post bilateranl adrenectomy -is it undetectable ? it should be coz adrenals are the major scource of pregnenolone
Hydrocortisone only lasts in the body for between 4-6 hours so you have a very high peak an hour after you take it & then extreme lows, I guess this is okay if your adrenals are not really impaired as in adrenal insufficiency, either primary or secondary. If I only took it once a day & not throughout the day I would be dead in a couple of days!!
I think I would be ok on a low dose- I had one incident after surgery (hysterectomy) which I now think was probably insufficiency but otherwise it is just the increased demand from taking taking the thyroxine that is making me feel sick. I know secondary hypoadrenalism is often missed by acth even if they would do it-it’s a mess!
Yes, you would, because your adrenals aren't working. But, if you're just taking it for adrenal fatigue, the idea is to take it once or twice in the morning, when you have most need of cortisol, and the adrenals are working their hardest, but then leave them to it for the rest of the day. That way they don't shut down completely. But many doctors that prescribe it don't understand that it will shut your adrenals down if you take it throughout the day. Not sure I'm making myself clear here.
I think Dr P knows the truth of this. I really didn’t forsee how badly the mainstream would let me down, although I should have done. I hope he’s well. Seeing him again was one of my ideas. I agree-people with lesser degrees of adrenal reserve, like me, must often be over treated by mainstream medicine, leading to unnecessary secondary adrenal shutdown, so maybe I shouldn’t be to upset about being denied it x
He already made suggestions along those lines when I saw him a couple of years ago- why am I breaking my neck to get nhs iatrogenic secondary hypoadrenalism and crumbly bones!
He is well although about to have an operation and I’ve made an appointment to speak to him on Friday. Presumably I will always have to take a bit of hc, but I know what he thinks about a small quantity necessary for biological replacement, which shouldn’t produce the scary side effects.
A talk with sensible friends is the way to see the light. Xxxxx and thanks so much to both
I think mine are fine- the problem would be failure of my damaged pituitary to secrete enough acth to ensure enough adrenal reserve to cope with speeded-up metabolism from the Levo. But the alternative is unrelieved hypo, which is just torment. Hence the balancing act. My poor pituitary won’t grow back. But I guess that side effects from the high doses of hc prescribed by orthodox medicine are not really anything to wish for, and thank goodness for Dr P xxx
The nhs endo refused to do provocative tests- cortisol is in the range where insufficiency ‘cannot be excluded’ without dynamic testing. Growth hormone low, luteinizing hormone low, and tsh low. Gonadotropin can’t tell because of hrt and prolactin is artificially raised by stuff I take for the nausea, metaclopramide. Dhea very low x
Won’t even do acth test (although apparently this is misleading in secondary, and you need something called overnight metapyrone to avoid false negatives x
They are, and i think he’s let me down abysmally and missed my diagnosis. I believe in the nhs and that it should be better than that, so I think I’ll have to complain so that other people get better treatment. I will keep everyone posted! Xxxx
What made you suspect the adenoma was there? I know that one reason to offer an mri, which I was refused, is that some of the symptoms can be similar x
I first went to my ENT dr saying that my taste & smell was compromised, I had an MRI & a pituitary adenoma was found, it went on from there. They don't offer MRI's usually before they have chemical evidence of hormone failure or excessive hormone secretion. If you are still very unwell an MRI might show what the problem is.
Yes- the private consultant prescribed thyroxine pending a private mri, but the nhs has refused it and I can’t afford to pay. If I did stop taking it I would be as ill as I was two years ago. I’ll have to make a complaint. Thanks! X
hi , i may undergo oopherectomy with bilateral adrenectomy for hormone problems - can you pls suggest a good surgeon in uk for adrenelctomy and hydrocortisone on a daily basis post surgery may cause eye pain ?-what happens to pregnenolone levels post bilateranl adrenectomy -is it undetectable ? it should be coz adrenals are the major scource of pregnenolone
I'm interested into why you are having bilateral adrenalectomy? I've only ever heard of it being done when a person has persistent Cushing's disease where the only way to stop the ACTH production when pituitary surgery has failed is to remove the adrenal glands. It means that you then become steroid dependent & need replacement steroids. I'm on Hydrocortisone as my adrenal glands don't work following pituitary surgery, I've never heard that it causes eye pain. I've no idea about pregnenolone. The adrenal cortex produces three hormones: Mineralocorticoids: the most important of which is aldosterone. Glucocorticoids: predominantly cortisol. Adrenal androgens: male sex hormones mainly dehydroepiandrosterone (DHEA) and testosterone.
hi pauline = thanks for the reply - i suffer from endometriosis related pelvic pain - DR Andrew cook gave me pine bark extract 5 years back - i took it for a month and had massive migraines - all the hormones in the pituitary fsh , lh acth adrenal androgens are elevated -post menopause due to increased pERIPherial aromatisation i come under increased risk of breast cancer - i;m 44 years old now- i;d be happy if you could suggest adrenal expert in UK or in us
Yes without the adrenal glands you won't make them so they will have to be replaced. Not all Endo's will give DHEA, I'm lucky in that my Endo does, however you can buy it online. Are you under an Endo? You will need to be post adrenal op. Where about in the UK are you? Send me a pm & I'll see who I can find. x
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