Does anyone know of a good adrenals specialist on nhs ?

Hi guys, I recently told you about my daughter who has had what appear to be hypothyroid symptoms since puberty, repeat trips to gp proved useless so we saved up and visited Dr peatfield. He felt her problem was adrenals and this was what stopped her body accessing the thyroid hormone she made. We undertook the saliva cortisol test and her cortisol results were extremely high, two evening results of 53 and 61, (they should be low single figures in the evening ) took these results to gp who referred her to local hospital endo. Had visit, and he said she was fine because they had undertaken a urinary cortisol and this test was ok. I asked about the saliva test stating this was supposed to be more accurate and he simply said they prefer to go with urine ????? I would mind but my daughter has some of the classic cushings symptoms / signs so I am not prepared to gamble with her health. I have ordered another saliva kit, and should this come back high again, I am going to go back to the gp and ask to be referred to a cushings / cortisol specialist, not a diabetes Dr ! So angry, I knew we were on a losing battle when he said a comment about her TSH of 1.8 being fine, and this meant that her thyroid was fine as the tsh was the best test. Ha ha, her t4 was just above bottom of healthy range too. I then gave him a copy of her thyroid urine results that Dr peatfield also requested which showed her t4 being very low (below healthy range) and was brave enough to suggest something was perhaps stopping her accessing her thyroid hormone seeing as this test actually represented her daily usage levels. He said, they would undertake thyroid bloods again and would see her in three months. Bloody imbecile ! So angry, but going to take the saliva again and take it from there. So does anyone know of a knowledgeable endo with regard to adrenals on the nhs :(

Last edited by

19 Replies

oldestnewest
  • You ll be lucky to find any of them knowledgeable on the NHS! Lol

  • Hi Femme. Just in case you don't get any suggested contacts from the good people on here, it may take a bit of detective work. Here is a link to a patient leaflet and although it discusses insufficiency there are a number of links and possible contacts like the professor at the Birmingham hospital. Perhaps you could approach one of the contacts to ask who is the best expert to contact in the NHS. Sorry I can't be more helpful:

    endocrinology.org/policy/do...

  • That leaflet has a wonderful line about those of use who have to resort to self-medication or seeing someone like Dr P. It says - "Importantly, individuals who self-medicate in this way may delay detection of the real cause of their symptoms". Delay? It's only taken 37 years in my case. How much do you suppose I am "delaying" diagnosis by actually doing something to treat myself?

  • Sadly, I don't think there are many options except self help. The lack of specialist knowledge is quite staggering. You could spend even more lost years searching for someone that knows more than you so already!

  • Been out most of the day hence late reply, thanks for the info editfmrt, will have a look x

  • Forget about finding anyone on the NHS; there is no knowledge or expertise in this area. They only acknowledge Addison's Disease and not any of the adrenal stages before that.

  • Which is the odd thing. They acknowledge that thyroid function can vary. They acknowledge that kidney function can vary (I'm stage 3 failure right now, but possibly asymptomatic). Yet they refuse to acknowledge that adrenal function can vary. The big question is - why?

  • Thats awful, my worry is if it should be cushings, we need to find where the tumour is, so bloody frightening, but with her sky high cortisol, i can think of little less possibilities, I am hoping and praying next saliva test proves me wrong!

  • If you're concerned about that and a tumour I wonder if a private full body scan would be any help, though I don't know enough about those to know if they'd definitely show up such things but looking into that could be wise to find out if it could be helpful.

  • I have/had Cushings which took years to diagnose by which time I suffered three broken ankles. My last visit to my doctor, who I really got on well with, said 'pick up that box of [heavy ] books, that's how much extra weight you are carrying , that is why you feel so ill !!! I then saw an endo who diagnosed Cushings [having missed it on a previous visit 6 months before.] Have you googled Cushings ? Try to get a referral to St. Barts in London. It is a centre of excellence for Endocrinology. Ging

  • Thank you for this ging, its ridiculous isnt it. Ive read a lot about cushings and although i dont want her to have this, i want it diagnosing asap if she does! what happened next for you, did they do mri and locate cause, if so what happened next? Thank you for your help xx

  • Hi F. Who knows what the official position is, or what its basis is - but it seems (judging by my own experience and that of others here) like there's a signifcant proportion of endos that diss the saliva based adrenal stress test - and favour the 24 hr urine collection based test.

    Also that significantly and chronically raised (and perhaps reduced) cortisol levels (that are still below or above the thresholds for a diagnosis of Cushings and/or Addisons?) seem likely often not diagnosed.

    We discussed the scenario in the past few days in another thread. My personal impression is that they primarily are interested in diagnosing full blown and acute illness, and consider the sort of variations in cortisol level that may be shown up by the saliva test as not being medically significant - and as potentially misleading.

    Personal experience suggests this (given its tendency to progress on into chronic fatigue and hypothyroidism) is untrue - but that gaining a good understanding of what's going on may require repeat and/or other tests, and a more holistic view. The saliva test also shows up seemingly significant variations during the day which the 24 hr urine test cannot detect.

    Chronic stress and periodically/chronically raised or lowered cortisol seem meanwhile to be a very significant threat to health.

    The scenario on cortisol could be much like that which applies in the case of the de-facto use by the system of the stock T4/TSH blood tests not just to diagnose but also to rule out hypothyroidism. ('your thyroid is normal')

    i.e. that it suits the system to apply extremely wide reference ranges, and to allow itself to be led by the test result in isolation rather than by assessment of symptoms - but that these leave undiagnosed very large numbers of actually significantly ill people...

    ian

  • Hi Vajra, I hear what you are saying, and the crazy thing is that from all i have read, saliva testing is by far more accurate than urine, but then im sure they know this which makes it all the worse. With regard to my 16 year old daughter, her evening levels of cortisol were massively high, no grey areas and certainly high enough for cushings diagnosis, for example, the tea time test had a range of 3.0 -7.0 her result was 54.5, bed time test range was 1.0-3.0 her result was 61.8 , so this is why i am taking no chances, still praying this was a fluke, but going to do another saliva to be sure, so if the next test comes out the same, i will be back at gp's office asking for a referral to a specialist centre as opposed to a bl**dy diabetes clinic. I also mentioned her thyroid hormone urine test, and that it was way below range, only to be told the best thyroid test was the tsh, and hers was fine, so no worries there the! As if! Makes my blood boil x

  • I'm sorry to hear of all this Femme, but realistically can't help much with specifics. At least it seems you are well past the first major barrier when dealing with medicine - you've figured that the man behind the curtain is not necessarily what he appears to be.

    My impression is that the system chooses for bureaucratic/operational/commercial reasons or whetever to ignore the more moderate or early stage hormonal imbalances - scenarios where in the case of the adrenals its hard to distinguish between the effects of life events/chronic stress and what they regard as disease per se.

    It's nevertheless always a case of doing what we can to draw on whatever resources may be available if it makes sense - and if necessary moving on elsewhere.

    I guess if your daughter is reading high enough for Cushings then there could well be issues in play requiring the involvement of traditional medicine. In the more moderate scenario it seems like it may often be as useful to work with a good naturopath or the like - that they are more likely to be prepared to put the time in that's required by the sort of holistic treatments that can help there.

    I ran into problems with very high blood pressure in the run up to 2005, and was actually diagnosed as likely having a pheochromotcyctoma (a hormone producing adrenal tumour) by the 24 hr urine test.

    They stepped back from this diagnosis when my adrenal hoprmone levels dropped, but never offered any view as to why they had been so high.

    I had Cushings type symptoms for a while, and at times feared the worst. The piece on this pathology web page was particularly useful if a bit sobering (about 1/2 way down) - it lists in very concise and understandable form the possible causes of Cushings: pathguy.com/lectures/adr-th...

    Good luck with it all...

    ian

  • Hey Ian, thank you for the link, will have a read, will take on board what you say, trying to keep an open mind, but just focused on making sureb they are dealing with this all properly and not a good start son far! Will keep plugging away until I get some answers for her, like a dog with a bone now lol. Ignorance may have been bliss but that wont fix our problems ... Dangerous thing 'knowledge' the more we learn, the more unsettling it becomes with regard to knowing when someone you held in high esteem and trusted a.k.a a doctor for example, tries to fob you off or give you bogus info! Jadedto say the least! Thank you for responding too xx

  • No need to reply again F, but I'd say hang in there and trust in your judgement and knowing.

    It's been a long road, but I've come to view it as a life path/teaching and learning deal - bearing in mind that very often our task is to get past seeing only conventionally 'pleasant' outcomes as desirable or acceptable, and to drop the conditioning that leads to unrealistic expectations - and to most of society viewing medicine through a lens that doesn't bear much relationship to reality.

    There does seem to be a natural 'flow' to life and to this stuff - which means that if we can walk between the raindrops - that's connect with/see/stay light/open to/see/accept/work with the reality that's in front of us to with good grace maximise outcomes instead of trying to force our will on it - seems to deliver a very good feeling. Even through considerable adversity.

    I think we're required only to take responsibility for ourselves and for our interaction with those we come in contact with - that there's no simplistic right or wrong outcome, and that if we can muster the courage needed to face this reality with compassion and wisdom that it often shakes out pretty well....

    ian

  • As soon as I was diagnosed I was admitted to St. Barts in London where I was cared for superbly. It took a long time and an operation on my pituitary and two years on and with the addition of T3 I am feeling so much better. Ging

  • that gives me a bit more confidence then, thank you, and more importantly, i am pleased you are on the road to better health! x

  • Thank you for your kind thoughts and GOOD LUCK ! Ging x

You may also like...