I received a letter this morning from an nhs endo my gp had referred my cortisol results to. Essentially the letter said that although my cortisol is low, it’s still within ref ranges and therefor no action at this time. It also rattled on at length about my low DHEA and a Cochrane review from 2015 which stated that replacing DHEA was negligible in increasing my hormone levels to optimal, and that my low level is a ‘normal state of affairs’ for my age.
I spoke with a private endo last week and am waiting to hear back from her regarding next steps after a fresh round of blood tests my gp ordered, I haven’t seen the results of these but gp receptionist says they’re all ‘satisfactory’. I’ve asked for a copy to be posted to me as I can’t collect them. Is there anything else I can do? I’m still extremely tired and weak. Are all 58 year old women just meant to put up with this qol because they’re no longer breeders and viewed as past their sell by date? Any recommendations on how to proceed would be welcome.
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Jamima
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Do you know if the Endo you were referred to has experience with pituitary/adrenal issues as many of them don't. You can ask for a 2nd opinion, it's your right to do so.
I’m afraid I don’t know Pauline. I’m so tired of all this, I’ve just no fight left in me, I’m rapidly becoming very depressed and have no desire to do anything, speak to anyone. I’m just going back on hrt in the hope that it might help. I just can’t continue like this, everyone telling me I’m fine when I’m anything but.
I say fairly frequently that at my advancing age, I do now want to have the blood test and other results for a 73 year old, I want the blood test results of Usain Bolt!
Why should the medications given for any health problem be reduced simply because the "average" for that age group is lower than a younger age group?
Hello puffy face. Yes, the endo seemed good, she listened well and said she’d intercept the blood results as she has access to the nhs portal. I sent her secretary a couple of emails saying I’d had the tests and that they were now available, heard nothing, sent another email yesterday asking if she’d received my info. She replied saying she had and that endo is on holiday this week. It just seems like a fight and I’m now wondering if stopping hrt has exacerbated my low results. I’m feeling beaten. I’ll wait to hear from endo when she’s back.
I definitely think that our hormones...we’ll certainly mine at 51...make all symptoms worse. Stay strong...you will get help...we just have to fight for it! X
It also rattled on at length about my low DHEA and a Cochrane review from 2015 which stated that replacing DHEA was negligible in increasing my hormone levels to optimal, and that my low level is a ‘normal state of affairs’ for my age.
So the NHS suffers from institutional ageism? That isn't a surprise.
There should be reference ranges for people of all ages. I accept that someone of 20 is likely to have different results for all sorts of tests from someone of 60 or 70 or 80 but for a doctor to say that low levels are irrelevant and the reference ranges don't apply to a patient because of their age is appalling medicine.
I don't know if you are aware but in the UK DHEA is a controlled drug. It was classified as an anabolic steroid a few years ago and hence became a controlled drug. Whether this classification is accurate I don't have the biochemical or chemistry knowledge to know. I do know, however, that DHEA is an over-the-counter supplement in the USA, which suggests to me that the UK designation as a controlled drug is nuts.
Whether this classification of DHEA is one of the reasons your doctor is reluctant to pay any attention to your below-range level, I really don't know.
The endocrine bible describes the reasons for using a particular test, preparation, timings, any warnings, how to interpret the results etc. For adrenal issues the one you are most likely to get done is the Short Synacthen Test which is described on pages 68 - 70. Note that it refers to ACTH being tested - endos don't often do this although they really should.
There are various types of adrenal insufficiency - endos often just test for primary and ignore the other two, leaving patients suffering. To diagnose the others they would need to test ACTH, and no doubt a few other things :
Thank you humanbean. Yes, I must say I really felt that response was related to a ‘well, she’s past it, we’ve got younger people to care for’ attitude. Interestingly, the nhs endo is a colleague of my private endo so I’ve sent the letter to private endo for comment. Thank you also for the links, I will read them, but it’s exhausting trying to fit pieces together when you’re not a medic! I really hope my private endo can shed some light or I’m up that famous creek for ideas on how to move forward.
I really feel for you because I was on this wheel for nearly a couple of years. I had a number of SST, all of which were low but the Endos just kept messing me about and when I got angry and pointed out that I couldn't even get out of bed, they just kept saying 'you are not ill enough!!!!', I was advised to go out and collapse and call an ambulance as they would then judge that I was ill enough!!!! In the end I found an Endo that specialises in pituitary problems and within minutes of talking to him on the phone during lockdown, he was giving me hydrocortisone and a diagnosis of Adrenal Insufficiency. I feel so much better now and my thyroid treatment (T3) is now working better.
Thank you Heather. I’m waiting for private endo to get back to me as gp and nhs endo are stumped. If I get no further with private endo, I’ll have to self medicate as this isn’t a life. Glad you got it sorted.
I read on Dr Sarah Myhill’s site that taking 50mcg Pregnenolone would most likely help to raise DHEA and thus improve cortisol levels as well. My DHEA on a recent Regenerus test came back <10 So I’ve ordered some Pregnenolone 50mcg and I’m going to give it a go as my GP was totally uninterested in helping me
Well, Sarah Myhill suggested 50 mcg was a good level to take so I just googled Preg and looked for that, then when I found 50mcg, I looked at the fillers as I’m sensitive to so many. I settled on Swanson. As I only ordered them yesterday I’ve no idea how they’ll be. The reviews were all good, so time will tell. I’m just going to go for it as my DHEA was non existent and no interest from my GP
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