Confused and anxious about diagnosis, can I really have a diagnosis of Addisons one minute and then not

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About 25. years ago I was diagnosed with Diabetes, Hashimotos and pernicious anaemia with ANA and the likelihood of developing Addisons. I was sent home with Hydrocortisone tablets to be used in case of an emergency and told to alert the doctors/surgeons should I need an operation, where I should have adrenaline as a precaution. I have had short synacthen tests annually while living in London and Oxfordshire. I have had two 'crisis' type episodes, one in my twenties and the other in my forties, where I became extremely weak, could not wake up much before noon, had no energy and felt totally disconnected, from all around me. These both lasted several weeks before I was back to normal and I have had nothing like them since. I am now living in Buckinghamshire and have had trouble getting my annual short synacthen test and hydrocortisone tablets from the GP. I was eventually sent for the test, which as usual, came back clear but they now say that I no longer have Addisons and don't need a prescription for hydrocortisone. I am not sure how to take this as it doesn't seem right?

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  • Posted

    **It looks you have Addison's. And also looks they do not want to treat you for it. Look, this is the story of my life. They diagnosed me with Addison's in a hospital in the country where I was living in 2015 and shortly after then they said I did not have it. Since then I have been managing on my own rather successfully. I used to have pneumonias, 3 in 4 years, when I caught a cold or the flu. No more pneumonias since I treat myself. I have to buy the HC with no prescription, online. Very expensive. I live in Australia and I approached the Addison's UK Association. I think that because I live down under (I am from Barcelona), they did not want to get involved with me. If you live in UK try them and see if they help you. There are illnesses they do not want to treat. Why? I do not know. My problem now is to get a referral to an endocrinologist specialized in pituitary problems to treat my pituitary microadenoma that was found by accident, and has grown a lot in the last 8 months. In Australia the GP doctors chucked it out of their premises if you insist on something... I hope I have helped you. I wish you the best of luck from freezing Victoria in Australia in later Spring. By the way how do you manage with your Hashimoto's?

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  • Posted

    I forgot to tell you that once you have Addison's is for life. It is an autoimmune condition and it is permanent. You also have Hashimoto's which I think it is also autoimmune is it not? Once a person has an autoimmune disease, she or he can develope other autoimmune conditions.

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    • Posted

      If and that's a big IF, you have Addison's then the issue is whether it is Primary or Secondary.

      I cannot speak for Primary, but Secondary is NOT always permanent.

      I had Secondary for 3 years and then my cortisol levels recovered.

      Best wishes to you.

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    • Posted

      Thank you.

      I'd like to know what are the tests to have to determine if Addison's disease is primary or secondary? I am sure that if doctors are willing to help, tests can be done. For example, when I had a MRI in the past, the doctor who ordered the MRI was a gastroenterologist. In the MRI report they mentioned 'adrenals 'no problems''; well not in those words of course. The adrenal glands were not mention when he ordered the test in question. None of the endocrinologists I have seen have been since 2015 when I was diagnosed, are remotely interested in investigating any further about my low cortisol levels shown in a saliva test in 2012. I thought then, that the GP who ordered the saliva tests for me and my husband as well was doing something which was done as a matter of course when people had very low blood pressure. We moved to another State, we never saw that doctor again... and to this day, we have never met a GP/endocrinologist wanting to read those saliva tests. After that, we have had only once the short Synacthen test. To me, it shows clearly that our levels of cortisol are out of whack, but the Professor who ordered the tests said that we did not have Addison's disease full stop. My husband does not have it. He has adrenal insufficiency. But I know, too well, after having had 3 pneumonias in 4 years + other symptoms+ Addison's crisis that I have the illness. The professor and some other endocrinologists who have all studied at the University, do not want to proceed. As far as they are concerned it is all in our mind. In 1965 when I was pregnant, my gynaecologist in Spain told me he had to treat my adrenal glands which were not working well. I was then 27 y.o. He told me that after I had the baby I had to find an endocrinologist to treat my adrenals. I am still looking for a specialist who believes it is not all in my mind! Sorry for the length of this comment. Thanks for wishing me luck.

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    • Posted

      1. You must find an endocrinologist who is interested in his work. That means, NOT one who focuses on diabetes, which most do;
      2. Secondary means it is a result of something "bad" happening. In my case, pituitary surgery that did not go to plan and left me with cortisol problems for 3 yrs;
      3. Primary means the adrenal glands are not functioning correctly. Some meds can also cause primary addison's disease
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    • Posted

      Also:

      a) Adrenal insufficiency=Secondary Addison's;

      b) When doctors talk of Addison's they most often mean Primary;

      c) If you believe you have insufficiency then you must be alert to the chance of an adrenal crisis and be prepared with corticosteroids on your person at all times;

      d) If you end up needing medical treatment, you MUST alert medical staff to your condition and normally they will prescribe more corticosteroids for you in the days post surgery;

      e) If you have symptoms and feel unwell then the docs you saw saying "it's in your mind" are clowns and it's time you left their circus and made a bee line to a teaching hospital which should have a decent endo on staff.

      Good luck.

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    • Posted

      I totally agree that finding an endocrinologists specialized in pituitary and hypothalamus problems is the beginning. In 1965, I was treated for my adrenal glands by my then gynecologist. (I was pregnant and my life was in danger). He recommended me to find an endocrinologist because my adrenal glands did not work well. I was young and had problems galore, so I think I did not try very hard to find an endocrinologist. I always felt tired, low blood pressure, etc. Finally in 2015 when I was 78 I had the adrenal crisis. I have been on hydrocortisone since then. It is impossible here in Australia to be taken seriously when it comes to endocrine problems.

      I had an MRI in 2017 to check my brain (I cannot remember who recommended and what for, to have it). What was found was a pituitary micro adenoma which is now growing fast. I am terrified. I know now that my hypothyroidism is secondary of course.

      On the 30th October, I was dismissed by my GP because I insisted on having a referral for an endocrinologist in Melbourne specialized in pituitary problems. I am medicating myself for my hypothyroidism for the last few months. I live 100 +km away from Melbourne in Ballarat a city with more than 100,000 people. Doctors want patients to stay and be treated by local doctors in Ballarat and do not want to give referrals for people to be treated in Melbourne. Plus I am 82 now. 'over 80' they say (meaning what???) I have read that pituitary surgery is dangerous, but I read also that micro adenomas can be treated with medication and radiotherapy. I managed to get another GP after 3 weeks the old one had dismissed me, he gave me a referral for the doctor in Melbourne but they are not contacting me... My husband has left a few messages asking them what is the waiting time, but they do not contact him.

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    • Posted

      This is beginning to wander off down a side alley as I really don't believe that it is relevant to Pru2dx. However, in case someone else is reading, pituitary surgery is not particularly dangerous nowadays unless the adenoma is at the hypothalmus stalk (v rare).

      First, although your pituitary is in your skull, it is not in your brain. A pituitary adenoma (tumour) is NOT a brain tumour. The nice (!) thing about it is that it tends to grow into the sinus cavity, giving the neurosurgeon loads of elbow room to get at it.

      Second, the surgeons don't take the top of your skull off like a boiled egg any more. They have very precise micro-instruments and miniature microscopes which they push into the sinus cavity through a little hole at the top/back of your nose. That's what I had and mine was a macroadenoma (35mm diameter). I had no discomfort let alone pain.

      Radiotherapy is done by focusing a bunch of X rays (gamma rays? something sciency anyway) from every direction to create a hot-spot on the tumour. {Same idea as using a magnifying glass and sunshine to burn the neck of your schoolmate in front 😃 } But these rays don't go round corners which means that they have to go through your brain to get there. On average, it is safe...

      One man's medication is another man's chemotherapy.


      Someone above mentioned endocrinologists only knowing about Diabetes Melitus. Not true but yes the get very bored with the number of patients presenting with DM due to sloppy lifestyle. They really REALLY want to see unusual cases. Yes, pituitary disease is very rarely seen by your GP/PCP but it is not that unusual for an endo. Most of the regulars on here are the exceptions; the others say thank you and goodbye.

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    • Posted

      I am always very interested in what you have to say because you are very knowledgeable. Living in Australia things have a different perspective though. The neurosurgeon who operated my meningioma in 2007 sent me a few weeks ago to be checked for peripheral neuropathy as if I had been complaining from pins and needdles in my fingers... just to get rid of me and avoid discussing the alarming rate in which my microadenoma has grown the last 8 months. I do not have headaches or feel any problems but if I lose my peripheral vision, I'll more blind than I am now with my ARMD. In UK there are about 60 million people, here in Australia there are 25 million. In the health ranking of the WHO we are number 32, USA is number 35 and I forgot where UK is. My husband from London thinks UK is doing better than that. I am 82 years old in very good condition thanks to a good lifestyle. In spite of my Addison's disease an hypothyroidism. When people are over 80 it is not easy to find doctors who want to treat them. Refusing referrals, delaying tests etc.

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    • Posted

      You cover a lot of issues in your email.

      Let me address one at this time.

      Your comment on treating microadenomas is not correct.

      Treatment depends not on size, macro or micro, but on whether it is a functioing or non functioning tumor. In particular a functioning tumor that is a prolactinoma can be treated with medicine.

      If you were in Sydney, where I am I would recommend a very good endo.

      if the tumor is growing it must be treated.

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    • Posted

      That was me who mentioned diabetes, but not only melitus.

      Good endos DO want interesting cases, but I found most are happy with bread and butter patients who are simple and don't involved too much thinking on the specialist's part.

      At least that's my experience.

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    • Posted

      I agree with you. Most of the endocrinologists are only interested in patients suffering from diabetes mellitus or diabetes I think it is called type2? If you to them with other issues like hypothyroidism most of them know less than me about medication for it in spite of having studied at the university, not me. I am only a secretary by trade...I have seen lots of endicrinologists since 2015. No help from them.

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    • Posted

      Yes, I forgot about prolactinoma. I should not have dismissed drug treatments: there seem to be some very effective ones and in general they are rather less risky than surgery.

      Pituitary tumours are very rarely malign, so surgery is not always a must. But if they grow unchecked they can cause blindness by damaging the optic nerves. So it has to be a judgement call on risk/reward.

      I've had three endos and have no complaints with any of them - the contrary in fact. But then again, my diagnosis was pretty straightforward and unambiguous (when eventually I persuaded my GPs to let me see one - you don't need to be in the Outback to encounter that difficulty but to be fair, since mine is non-functioning, they weren't getting any clues to put me before any other typical whingeing pom 😃 )

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    • Posted

      This is my concern: the microadenoma is growing and nothing is done. Two years ago, my then GP tested my prolactin levels. They were low. My then endocrinologist was furious that my GP had given me the test... I live too far to travel to Sydney. And it is impossible to have an endocrinologist so far away. I got a referral a month ago for an endocrinologist in Melbourne. The wording of the referral is very strange by the way. The endocrinologist is not contacting me to give me an appointment. In the meantime, I have an appointment to go to a hospital in Melbourne to see an endocrinologist there. But it al depends if he/she is 'pituitary knowledgeable' or just interested in people with diabetes.

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    • Posted

      Sorry but your comment about the pituitary tumor**

      very rarely malign, so surgery is not always a must.***

      is not right.

      Being benign or malignant MAY have the same result: major quality of life problems IF the tumor is growing and remains untreated. If the tumor is growing, as it grows (over months or years we don't know) it will collide in time with other structures in the area and cause damage. That is what is called causing a MASS EFFECT.

      It is best to remove when it is not touching any other structure, otherwise the question on removal is "how much will be left inside the patient because we cannot remove every bit of an invasive tumor".

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    • Posted

      If you were in Sydney or traveling to Sydney, I could recommend an excellent endo who knows the pituitary gland. He is located at St George Hospital (both private and public wings).

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    • Posted

      Could you please give me the doctor's name? I am in that area and have just recieved my cortisol result of 108 nmol/L (range 138-650) taken at 8:40am. I'm waiting to hear back from my Dr but assume I'll need to see an endocrinologist.

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