Addisons vs. Secondary Adrenal Insufficiency

[Dee]

I could not agree with you more. It appears that the majority of training the medical profession receives is “on the job” training. The rarity of our medical conditions dictates that they receive very little and infrequent training in our conditions.

The words “I don’t know, but I will do some research and find out for you because it’s my job which I am handsomely rewarded for” are translated by the time they qualify to “I have read the first three paragraphs and if the person in front of my desk whose life is being so adversely affected thinks I am going to waste my time by keeping myself informed and up to date, they don’t have a clue about the person in the waiting room who has a nice straightforward illness and they will cover the cost of refuelling my merc.

Hi Paul, First of all, thank you for your support and understanding. My impression is that once someone's case gets a little too complicated, they (not that all doctors are the same, mind you) like to sweep it under the rug (especially since, like you said, they do not keep up to date with research). I was surprised that when my doctor first saw the below range ACTH, he seemed really concerned, and thought I *should* see an endo and have the MRI, etc. But, once he got the letter back from the endocrinologist, which basically wrote me off as having nothing wrong with me (pituitary-related), my regular doctor seemed to eagerly and readily accept this opinion. Like it's 'case closed'.

I'm also surprised that I've had a good relationship with my doctor for many years. As long as I didn't bring anything more complex to him than my regular exams, or something like a sore toe. BUT, get into these hormonal problems that have finally hit the fan after years of my body hinting (more like screaming) that there is something *really* wrong, and I'm persona non grata.

A Rheumatologist is indeed the discipline responsible for auto-immune disorders. By that, I don’t mean they cause the condition! , Generally speaking, it would be one person at the centre of the hub that would refer youyou're to different consultants, for example, in your case, it would be your doctor that would refer you to an endocrinologist. When your doctor can anticipate that “the endo will have the same opinion as him” just about sums it up. Blinkers on, apathy set to high, watch each others’ backs and make sure that this OAP (Over Anxious Patient) either carries health insurance (add 50% to the bill) or is covered by a medical card. (Talk down to them and treat them like a second class citizen, after all, I won’t be seeing them on the golf course)

Ugh. I'm beginning to see that this is how it seems to work. OK - so, if I do see the rheumatologist, then, I will at least ask if they know of an endocrinologist that is knowledgeable. And then I can get my doctor to refer me. (This is in a perfect world, of course. )

Ah! The holy grail. I think you are confusing difficult with next to impossible. There are plenty of pertinently knowledgeable people out there. Unfortunately, they are mostly patients. Now, if we could get a few more doctors with the same knowledge, we would not be getting over 100 postings a week. For that one sentence out of your doctor’s mouth, my final step would be to change to a different doctor. Chances are, I would see him there in the waiting room. Perhaps I read your post incorrectly, but he comes across as a self opinionated uncaring idiopathic clown.

lol (not that it's ha-ha funny (well it is, kind of) - but I do agree with you that the patients are more knowledgeable than many of the doctors. Probably because we have more at stake than they do - like we feel like ****, and they don't.) The problem is there is a doctor shortage where I live. And, he has been an advocate for me up until this point - ie. he will prescribe desiccated thyroid hormone, whereas some doctors won't, so this is a biggie for me. It's just this little problem of my malfunctioning endocrine system that has been a (really big) road block. I do like him actually; but I'm so disappointed in most of what's gone down in the last year. I actually feel that if I could find a specialist to confirm that I do have something serious going on, that he would accept that opinion. I think, that is.

You are without a shadow of a doubt worrying unnecessarily. While there is no recognised link between auto-immune disorders and pituitary tumours, unfortunately, your body hasn’t read the medical journals and as more than half the members here will tell you, apart from having a pituitary tumour, they have also either been diagnosed with an auto-immune disorder, or have many of the symptoms of auto-immune disorders. It is not necessarily follow that your thyroid is going to shrivel up and die. There are many causes of hypothyroidism, for example, a pituitary tumour which can affect the thyroid in a few differant ways. I was diagnosed with lupus in 2001. I was diagnosed with a pituitary tumour in 2006. I was put on thyroxin in 2008. My low thyroid function is caused by the tumour, not lupus.

While every patient is different, some organs are more susceptible to friendly fire than others. Out of 100 patients with lupus (an auto-immune disorder), 98 of them will have elevated protein in their urine due to damage caused by their immune systems. Likewise, 87 of them will have rheumatoid arthritis to some extent. The lining around the heart and the adrenal glands enjoy places in the top 10. SIA (a form of anaphylaxis) is one a large percentage of us enjoy. In many years of research, I have yet to come across someone with an auto-immune disorder whose thyroid gland us compromised without the presence of a pituitary tumour. As luck would have it, I am now heavily involved with The Irish Lupus Support Group and will be putting a forum similar to this one live over the next few days. The web site (http://www.lupus.ie) will also be upgraded and will contain a lot more information than it currently does. The address of the forum will be http://www.lupus.ie/forum . The site is aimed at all immune disorders and is not confined to lupus. I will keep you updated as each phase goes live. The forum will be managed in a very similar way to Pituitary Chat.

Your pituitary gland is not going to shrivel up and die. Your tumour on the other hand might. One surgical option which is not as much in fashion as it used to be is total removal of the pituitary gland. While this is not ideal, you know exactly where you stand as regards HRT and there are many people walking around leading normal lives with normal life expectancies that have had their pituitary glands removed.

A pituitary gland is a bit like a husband. Most of the time, you are unaware of its presence. When it gets sick, it gets very ill (man-flu syndrome) and causes you a lot of problems. It can give you terrible headaches – especially when it is enlarged (not tonight dear syndrome). While it does come in handy, it is possible to live without it. Replacements for the work it does is easy enough to come by. While the replacement is not exactly the same as the original, the job gets done in the end but comes with some unwanted side effects.

Every patient who has been diagnosed can tell you in detail about when they were told. With the word “TUMOUR” ringing in their ears and the thoughts of “BRAIN CANCER” echoing around in their minds, it is worth remembering that a pituitary tumour is not a brain tumour, nor is it cancerous and will not metastasise. Your pituitary is a gland, not brain tissue. It just happens to be in a silly place.

So Dee, please don’t worry about what you don’t need to worry about. It is worth remembering that most of us members are members because we are having problems with the control of the medical condition. People with pituitary tumours that are being properly managed are far less likely to bother searching the internet in order to find a solution to their problems. No news is often good news and people don't publish no news. There are no significant problems to sort out. I fully understand the scary, lonely, confusing and frustrating place you are at right now, While I was actually relieved to be told I had a brain tumour, the weeks and months that followed still leave me feeling nauseated just thinking about the emotional trauma I suffered at that time. I buried myself in research to take my mind off what was on my mind (or at least under it.) I can honestly say that I know how you feel.

My thoughts, prayers and best wishes are with you. Please keep in touch.

Sincerely,

Paul

I have Hashimoto's (I have thyroid antibodies), so my thyroid gland is under attack. I get a lot of sore throats. I could have an ultrasound, but (lol) my doctor doesn't feel it's necessary. He did say it's probably just shrivelled up; but I would like to know I suppose. I don't know, for certain whether I do have a pituitary tumor, either. It's very reassuring to know that some people do ok without their pituitary gland, though - but you're right, worrying about something that hasn't happened isn't very helpful to me. But, it is sort of habit with me - must be the low ACTH. Thanks again Paul.

Dee

[Paul Clarke]

Hi Dee,

You are very welcome. There have been a few developments since my original posting. The web site and forum which I advertised as lupus.ie/forum will now be set up along exactly the same lines as Pit Chat. There is currently a forum at this address: http://www.irishlupussupportgroup.com/forum however, I have just registered another domain which is www.LupusAndAuto-ImmuneSupport.com. All the same rules that apply here on Pit Chat will apply to Lupus and Auto-Immune Support ensuring that all revenue raised goes to where the members decide (I don't see many voting for sticky buns, posh lunches and expensive restaurants over awareness campaigns, 24 hour live web support and medical equipment) and for its lifetime, it cannot be taken over by a chosen few who deny the members a voice and vote. Corruption will only be possible if the majority of members vote for it. Everything is set up, in place and ready to go. The only outstanding issue is now to make it a legal entity. Once it is a legal entity, I can then accept revenue and do fund raisers. I have a major fund raiser arranged which is a long story (too long) but involves a 26 day cycling tour of Ireland amongst many other things. It is designed to raise awareness and funds. Previous experience tells me that we can safely expect to raise tens of thousands. I have the backing of local and national press including TV where they will be following the tour. We have the backing of a police escort and despite the fact that it has yet to be advertised, we have had requests for over 300 sponsorship cards. By the time the tour finishes, people will be so sick of hearing about pituitary problems and auto-immune disorders that I am hoping they will pay us just to go away. The support I have received to date has been tremendous. All that now stands in the way is the fact that I need three people to be called "Chairperson", "Treasurer" and "Secretary" and to open a bank account under the name "Lupus and Auto-Immune Support". There are a few more similar charities in the pipeline for MS, ME and Frederick's Ataxia. While each charity will be independent, they will all come under an umbrella for rare illnesses which I personally believe to be related.

Related or not, the problems associated with these medical conditions are frighteningly similar. There is also power in numbers. Lupus is about 200 times more common than pituitary tumours and for every patient that has been diagnosed with lupus, there is another one that has been diagnosed with an auto-immune disorder. Three separate polls on this and other fora showed that there did not exist amongst those that voted a single person with a pit tumour that had not been diagnosed with lupus (about 25%), an auto-immune disorder (about 25%) or had at least three symptoms of auto-immune problems. The polls were far from scientific even though they were repeatable however, it is now officially recognised amongst the medical profession that there is a definite link between auto-immune problems and pituitary tumours. This is a huge leap foreword and opens the door to a lot of research.

Another advantage of having the charities under one umbrella is the sharing of resources. If I was in the prime of my health, we would be there now, unfortunately, being very ill for long periods takes up an incredible amount of time.

One of the reasons for the success of Pit Chat is the fact that it is run by members for members. Unfortunately, that means it is run by people who are sick. The usual set up is some manager telling the members what they can and cannot do. With Pit Chat, the members tell the manager what to do. The job of “Treasurer” and “Secretary” is to sit on the “Manager” (I prefer the term facilitator”) and report back to the members on the manager’s performance. An annual vote decides who the manager will be. Pit Chat is soon due for the annual vote. I am hoping to get as many members as possible to put their names foreword. If and when I am voted out, I will still be on hand to offer support to whoever is in control. Any major decisions are made by the members through the poll facility.

Pit Chat has achieved its first phase very well with about 125 people using the site every day. There are many people that benefit from the site but are not registered. Some people are afraid to register in case it leads to unwanted spam in their email. We have about 200 registered members and the number of people that use the site more than once in 10 days currently stands at about 800. With lupus being about 200 times more prevalent than pituitary tumours, well, you can do the math for yourself. Pit Chat as an entity has already had a few notable successes. Lupus & Auto-Immune Support gives me a lot more latitude and I will be donating a limited company which will mean that I can employ someone to concentrate on raising revenue from corporations, cover the on-line support and a million and one other things which are competing with my time that I need for the Pit Chat web site.

We are getting there, just frustratingly slowly. I am seeing the top guy in Ireland next week and while I am not expecting an instant cure, I do expect to be treated medically which for me will be a bonus. I currently can function for only 2 to 3 hours a day on a good day. With treatment, I am crossing my fingers in the hope that the severe chronic fatigue I have will be largely improved.

Anyhow, my brief update has once again turned into one of my epics which I have been told off for

If you have any questions, please feel free to ask.

Best of luck,

Paul