So after some 20 years of jumping through the NHS hoops to get a diagnosis and being badly let down, then going private to find that I did have limes disease and anaemia that the doctors didn't pick up from my tests. CD 57 range is 130 to 300 my results were -11! That's another story!!
Last September I had a cortisol saliva test which came back with very low cortisol readings, I have Skype consultations with a doctor in America, who advises what tests to have and then reads and treats from my symptoms and test results. This lead to the diagnosis of adrenal insufficiency and treatment began with hydrocortisone. I have now had three cortisol saliva tests, and the results have always shown a low cortisol reading therefore the dose was adjusted to suit my symptoms and readings again.
This means that I have to source and fund my own hydrocortisone supply, which I have successfully done so. I use Pfizer cortef.
So having some other medical issues and the need for a chest x-ray, I registered with my local GP ( after not seeing a go for 9 years) and ask for an emergency injection of hydrocortisone, as the guidelines state that anybody who is steroid dependent ( that could be for a multitude of reasons) needs an emergency injection as a life-saving practice . My GP won't issue an emergency injection. I wrote to her stating nice guidelines and Addison support papers too. She contacted Endro as still waiting for an appointment . He said I could be taking sugar coated pills so can I take my meds into the surgery pharmacy for them to check they are hc tablets!
As if I would just buy any old meds. These are sealed and from a well known online supplier used by many people on here! I find it difficult to take this on board! I will go next week a let the pharmacy see and open a new bottle!
I also stated I was off to work travel and climb in remote north Wales hence the urgency for an injection pack... I was told that was my choice and I should cancel my trip!
The GP did say that NHS would be adopting the salvia tests as they are more accurate than the current blood tests used by the NHS.
Why oh why are there so many horror stories about poor treatment from medical service providers? This is why I went privately because of misdiagnosis and lack of treatment .
Let's see what happens next week after my sugar pills have been checked!
Have a great weekend
Written by
kellykell
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Your title made me laugh-sorry but I reckon most of us have to some degree but there is a vast range of bad treatment. I don't know much about your problem but the suggestions sound serious so please be careful and listen to advice.
i had a 7 year nightmare of ending up house bound after thyroid removed, during that time my gp said my thyroid still worked fine, even tho i didnt have one!! what an idiot. wish i had done my own research at the beginning and saved myself years of illness, pain and upset. will never trust drs again. xx
Yes its shameful tht these doc ruin our lives while the real healers get swept to the side by gp.s. i go to isabela wentz and Dr axe among others also robert Morse there are many. And using natural cures.
I also believe in prayer and that healing can take place when the body is given the right natural medicine and nutrients which im working on now in my own treatment.god bless you
Yes. They really do annoy me. I am 36 (on Monday) weeks pregnant and self medicate. Due to have another thyroid test next week. The last was 4 weeks ago. This is at my local hospital. So they can talk through my meds and get me to change dose again! What's the flaming point they don't even know the basics that it takes 6-8 weeks for any med changes to show in your bloods. I am due to have an elected c-section at 38 weeks so any dose change will not show until after the baby is born anyhow! It's been a nightmare since I told them I self medicate they have no idea what they are doing at all. Hope you get things sorted with your doctor. They really just have no idea what the heck they are doing half of the time.
i have great days, good days and bloomin awful days, im still not level but heading in right direction. Having been left untreated for so long, i doubt i will ever be really well again. It came as a real shock to me to know that even the endo's know very little. i am paid by nhs and universities to give talks on what happened to me to med students, so they understand the real impact on someones life if you are a lazy crap dr xx
Good for you for doing that as it's helping them understand a lot better. It's shocking the real life stories you hear of people having their thyroids removed and getting such dire treatment or lack of afterwards. I was undiagnosed for years and my gp refused to do a retest so even that had a major impact on my overall health as so many other things within the body are interlinked. I can only imagine how bad it was for you! My thyroid practically stopped working altogether but to have it removed and told it's working ok it's just pure negligence.
Its shocking the things ones reads and the treatment thats out there from gp.s and the costs involved. I have spent a fortune while ive had such a bad quality of life due to being in the dark im only now realusing how bad eltroxin has been for me while thinking it was helping me. Clearly not !.
Im.going back on cannabis oil. And ambratose. And hope to wean off Eltroxin.
Hi what's eltroxin? I take thiroyd natural dessicated thyroid pills. I am going into hospital on Sunday so I doubt anything I do now will make much difference. I have been supplementing. This is my 4th and last haha. My body is falling to bits now x
However, be careful and make NO ASSUMPTIONS about which product it is. There are at least three different formulations of levothyroxine sold under the name Eltroxin. (Actually, I think there are several more but am certain there are at least three.)
In the UK and Ireland, it is likely the Mercury Pharma product which is identical to their non-branded levothyroxine.
I have a dream (With apologies to Martin Luther King!) that one day in the future, doctors will all be fully educated in the intricate workings of our Endocrine system. That no one will have to suffer like we all have. That people will be safe to go to their GP and get diagnosed promptly and efficiently. That people will not have to resort to self-medication in total frustration! Like I said, it's a dream. Will it ever become reality? Oh, I do so hope it will.
If only hey, here's my take and experience with thyroid and adrenals, and more doctors are saying the same thing.
If you've got a thyroid problem, you've got an adrenal problem that preceeded it. This though is not said much but in my experience. If you've got an adrenal problem your amino acid deficient, adrenals thrive on them, also include vit c @1000mg and a B Complex supplements.
Since doing this I sleep a whole lot better deeper sleep, muscle pain about gone, anxiety vanished, sense of humor returned, no crashes yet, don't think there will be either.
Just gotta get better again ie fitter, not looking forward to all that pain 😑 but recovery is back to a couple of days, instead of on the settee for dayyyys.
Mentioned these things to try and help you, as it's helped me...
Hello kellykell,,,,you have gone through so much,,and spent so much on medications,,,I really hope the ones you have been buying are genuine,,if the news is the worst, then solicitors and suing could be on the horizon,,,gp's don't like being told what you say you need,,,and the patient knowing what is happening with their conditions and medications makes them unhappy,,,,I hope they come to understand your fully connected approach to your health and work with you as fast as they can,,,good luck to you,,,ttfn from karen.
So many Medics are arrogant l am afraid. lts taken me over 40 years, 7 GPs and a strop before christmas to get to see an Endo who is very young and very good - still doing tests, but l do have low Cortisol which doesnt show up in normal Thyroid tests, and they just arent bright enough to ask: why l am always on or below the lowest figure. (a friend with a badly autistic child skypes America for help, and is laughed at by local group)
Well weirdly enough I have been given steroid injections to mature my baby lungs as she is being born (today) at 38 weeks, never had them before. Currently wide awake in hospital!
I didn't even know steroid injections were cortisol! Was looking at side effects last night of the injection as they never really tell you the risks at all just told me they are needed to mature her lungs. Turns out there is a higher risk in ADHD to the child! So too much cortisol or too little really does have a major impact on health. I also have 2 autistic boys and they were very placid in the womb, moved but not very much so wondering if I have cortisol levels. This baby went really really active within hours of the first steroid injection. Fingers crossed it doesn't do anything adverse to this baby x
Cortisol is related to Hydrocortisone which often was dished out in ointments for skin troubles. l am learning but there are other steroids in the body too like Testosterone and Progesterone and Peptides, l believe. Hope all goes well today
Take an amino acid blend, Inc vitamin C and a B Complex as cofactor nutrients. Can get the amino acid blend off of Amazon usually advertised as a growth hormone supplement. It's possible that your GH is low, as both growth hormone and adrenal health need and thrive on amino acids plus cofactors..
Follow up....took my Cortef in to be checked! Dr wrote a nice letter saying she could not give a script for an emergency injection even though guide lines state anyone taking steroids requires this emergency injection! So on a long waiting list for Endro now!
Never mind as I have had bought for me said emergency injection from abroad (yes licensed by a well known pharmaceutical company) so I am covered for any emergency situation where mobile coverage is non existent or for the just in case moment! One up to the so called little person! Not to be beaten!
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What should be my next step?
Cortisol test
Cortisol saliva results
Has anyone had experience of using 1% hydrocortisone cream for treating low cortisol?
Access to 24 hr cortisol testing
