Sunday, March 31, 2019

Mobility scooter accident


This afternoon I was on my way to Raby Bay to walk a friend’s dogs after doing 7,500 steps earlier in the day. On the way, on the ‘Rainbow Serpent’ pathway from the Cleveland Library to the Raby Bay Harbour / Marina, I had a cyclist ram my scooter and cause 3cm worth of damage to the front of my mobility scooter where his wheel crashed into the plastic to the right of the left front wheel.
We collided twice and I got a small whiplash, thrown forward and then back, wrenching my back and neck and went into shock which lasted for hours.
I’m about to stress dose with some Cortisone as I feel adrenal crisis due to the physical and psychological shock I experienced. Google ‘Panhypopituitarism’ and shock and you’ll read how people with my disease can die from an adrenal crisis.
It wasn’t entirely his fault as the hedges block off the view of someone coming around the corner but he was going VERY fast and crashed his wheel in between my left wheel and the front of the scooter which has a black handle.
The plastic has shattered and you can see the usually hidden part of the front place handle through the cream plastic casing. I was severely shaken up with slight whiplash and I went into shock, hands and spine-tingling and felt nauseous.
The young man riding the bicycle seemed very remorseful and kept asking if I was ok but he was the one that was launched forward and hit the front of my scooter and almost smashed into my face ðŸ˜¯
I asked him to go to the hospital to get checked out. but he said he was fine.
I will take a photo of the damage to the scooter in the morning as it is already 7.23pm and my iPhone 6S Plus has a dodgy camera that has 90% of images look like my hands are shaking from side to side. Annoying because I love taking photos and it only stops when I hold a magnet near the camera lens. Weird, right? I found this solution on a google search.
But I digress, photo in the morning and I’ll be visiting the council and demanding they reduce the hight of the hedge before the next accident is fatal. The young man could have become a quadriplegic if he had fallen. Not good enough!
I’m aching from head to toe and still a little shaken. I’m about to get into the bath and then get into bed with my heated back and shoulder blanket and recover from a very eventful day. I am 1, 428 steps short of 10,000 but everyone said I should just head home and recover so I relented even though it annoyed me that I was so close. I will add it onto tomorrow’s 10,000 steps. Wish me luck!
Time to go self-care and hope I can get out of bed in the morning.
Night!
Vanessa

Monday, March 25, 2019

My journey with Panhypopituitarism and Congenital Talipes Equnovarus (Club Feet)

When I was a baby in my Mother’s uterus I did not receive enough Growth Hormone and as such parts of my body were under-developed. Thus included my pituitary gland (60% of a full-size pituitary gland measured from an MRI when I was at age 20) and some bones in my feet causing Congenital Talipes Equinovarus. Congenital (from birth) Talipes (Clubfeet) Equinovarus refers to the position the foot is in (see picture below). I had it in both feet, with my left foot having a weaker ankle. I had several operations correcting the talipes, firstly severing my tendons and re-attaching so that my feet would straighten out - it didn’t last and causes poor circulation and other problems. 

The last operation was to break the bones in my feet, chisel them, set them with a surgical staple and put me in plaster from my toes to my hips. I then had to learn how to walk again after the plasters came off. I am now able to walk up to 3.5km on uneven ground and although people that look closely can see my foot roll, most people don’t notice my mobility disability as I wear Colorado and Caterpillar boots to lock my heel. They are terrifically restrictive and uncomfortable but bearable.





So back to Panhypopituitarism:

What is PHP?

“Panhypopituitarism is a condition of inadequate or absent production of the anterior pituitary hormones. It is frequently the result of other problems that affect the pituitary gland and either reduce or destroy its function or interfere with hypothalamic secretion of the varying pituitary-releasing hormones. Panhypopituitarism can be the end result of various clinical scenarios. The signs and symptoms are diverse. Manifestations that suggest congenital anterior hypopituitarism include micropenis, midline defects, optic atrophy, hypoglycemia, and poor growth.” (Medscape article on Panhypopituitarism)
“The pituitary gland is called the master endocrine gland of the body because it controls the function of other endocrine organs. The anterior pituitary produces the hormones thyrotropin (thyroid-stimulating hormone [TSH]), corticotropin (adrenocorticotropic hormone [ACTH]), luteinizing hormone (LH), follicle-stimulating hormone (FSH), growth hormone (GH), and prolactin (PRL). The anterior pituitary is controlled by specific hypothalamic-releasing hormones. The posterior pituitary produces vasopressin (antidiuretic hormone [ADH]) and oxytocin.” (Medscape article on Panhypopituitarism)
I was born with a pituitary gland that was only 60% developed and an absent pituitary stalk. My pituitary cannot communicate with the hypothalamus effectively without the pituitary stalk. As a result of this, my body does not produce sufficient cortisone, known as the ‘stress hormone’. My doctor explained it to me in simple terms to a scared 13-year-old.
“When people get sick, their cortisone level rises and they get better. When you get sick, your cortisone level plummets and you need to take tablets or have an injection of Cortisone or you will get very ill. Sometimes when you get sick you should take extra or double your dose. If you are ill and unable to keep your tablets down then you will need to go to the hospital and have an injection of 100mg of Cortisone (4 times my morning dose). If you get physically, mentally or spiritually stressed, this can affect the level of cortisone in your body. Sometimes it can make it go very high and then crash, leaving you with cortisone withdrawal and since cortisone is a steroid, this can cause ‘roid rage’ mood changes, neck and head pain and other physiological changes. Keep dehydrated or you will most probably have an Addisonian Crisis.” Dr Slobodnuik, Endocrinologist from Wollongong NSW Australia
When I was 18 I started drinking alcohol and waking up with the most severe hangovers and also effects of dehydration on someone with Addisons Disease. It really knocks me around, especially if the alcohol is wine or has Sulphur dioxide in it. I have only vomited three times in my life from alcohol - the first time for mixing the wrong types of alcohol in the one night; the second for having a few drinks of sparkling wine and then a lot of greasy food when celebrating graduating for a Bachelor of Education degree, and the third from overindulging at a party. Each time I felt absolutely horrid and promised myself I would limit myself on alcohol, only having one or two and no more. It has been programmed into me that I should do everything I can to avoid vomiting. I only do it once a year at most - as vomiting and not being able to keep my Cortisone down means hospitalisation. Not fun at all.
My initial diagnosis at age 13 was Addisons Disease (secondary). Basically it means I have Adrenal insufficiency and can go into an Addisonian Crisis if I don’t look after myself.
"Adrenal insufficiency implies that the adrenal glands are incapable of producing sufficient hormones, either in the basal (unstressed) state, representing severe adrenal insufficiency; or under conditions of stress such as infection or trauma, indicative of milder degrees of adrenal insufficiency. So, there are differing degrees of effect. The term does not imply a cause for the adrenal insufficiency, which may be Addison's disease, or derive from a regulatory dysfunction like a pituitary problem, where the adrenal glands are no longer properly regulated by the pituitary ACTH.” (Australian Addisons Disease Association Medical FAQ)

My pituitary was undeveloped, so I have secondary Addison's Disease and not primary Addison's Disease which can be auto-immune related.

Someone in the Australian Addisons Disease Association Membership asked a question about drinking:

Question: For some of the less disciplined among us, we were wondering about alcohol. For some of those that have a problem limiting their consumption. Is there a rough guideline you should stick to, so you don’t crash?
Answer: The first thing is, if you are drinking enough to make yourself sick and want to vomit, it doesn’t matter if you have Addison’s disease or not, you are damaging your brain. I strongly advise anyone whether they have Addison’s disease or not, not to drink so much that they physically get sick, because they are doing themselves permanent brain damage, small amounts each time. If you have reasonable amounts of drinks at night you have disturbed sleep. You don’t get the level of sleep to make your ACTH. So if you don’t have Addison’s disease you wake up with not as much Cortisol in your blood the next morning as you would otherwise have had. So a person with a hangover really has the same effect as having Addison’s. You lot have the advantage because when you do wake up you can take your tablets and your Cortisol level will go up to normal, so you would partially correct some of the side effects of a hangover just by taking your morning dose of cortisone. But there is still a problem in the morning. You crash!
Someone with normal kidneys and normal adrenal glands adjusts blood volume / blood pressure, very quickly and very easily. You can’t. You have to rely on certain medication so you are not changing it (blood volume) as quickly. Sure you have all the other systems but you are lacking some of the control systems. One of the things alcohol does is dehydrate you. It dehydrates you because you end up passing a lot more water because of the alcohol. So one of the problems you would have which would exacerbate, make things worse, is that your blood volume would be way down. So that one of the more important things to do is to drink a lot of fluid. Replace your water and salt as well as the cortisone.
I have not really seen any research or any investigation on alcohol and the problem you mentioned but on first principles, I would argue very strongly, one of the first things to do in Addison’s disease is to keep your blood volume up. You should always be hydrating in anticipation. I think you are probably talking about dehydration the next morning is a major problem.
As you can see, there are good reasons for me to not drink alcohol. 

So what exactly is the pituitary gland responsible for?


Image from http://emedicine.medscape.com/article/923789-overview


CORTISOL - THE STRESS HORMONE

Understanding the natural stress response

“When you encounter a perceived threat — a large dog barks at you during your morning walk, for instance — your hypothalamus, a tiny region at the base of your brain, sets off an alarm system in your body. Through a combination of nerve and hormonal signals, this system prompts your adrenal glands, located atop your kidneys, to release a surge of hormones, including adrenaline and cortisol.
Adrenaline increases your heart rate, elevates your blood pressure and boosts energy supplies. Cortisol, the primary stress hormone, increases sugars (glucose) in the bloodstream, enhances your brain's use of glucose and increases the availability of substances that repair tissues.
Cortisol also curbs functions that would be nonessential or detrimental in a fight-or-flight situation. It alters immune system responses and suppresses the digestive system, the reproductive system and growth processes. This complex natural alarm system also communicates with regions of your brain that control mood, motivation and fear.”
(Mayo Clinic article on Stress and Cortisone)
Due to my disease, panhypopituitarism, I respond to stress more acutely and feel the effects of stress on my body as if it has gone into shock..
“Psychological or emotional stress can precipitate an Addison’s crisis with the same effectiveness as physical stress or illness, and most endocrinologists recommend the same increase in cortisone or steroid dose during psychological stress and emotional upsets as they do during physical stress or physical illness.” (Australian Addisons Disease Association)

Lower Back pain and Osteoperosis


“Lower back pain in a person with Addison's Disease... one must bear in mind that there is an increased prevalence of osteoporosis in Addison's Disease which may require specific treatment. In this case, specific treatment may be needed and the cause of pain may be a fracture.” (Australian Addisons Disease Association)
I have pain in my lumbar if I do housework such as vacuuming or sweeping. I have difficulty bending over and picking things up. When I sit at the computer for too long I get tingling up and down my spine and have to go and have a bath and pain killers for relief.

What are some of the symptoms adults with a pituitary disorder experience?


Headaches
Vision problems
Unexplained weight gain
Loss of libido
Feeling dizzy and nauseous
Pale complexion
Muscle wasting
Coarsening of facial features
Enlarged hands and feet
Excessive sweating and oily skin
Moon face (with reddened skin on face)
Carpal Tunnel Syndrome

Helpful Links on PHP

Thursday, March 21, 2019

What is Panhypopituitarism?


The title of an eBook I am working on. I will share it soon. 

A group of people living with PHP are sharing their stories to raise awareness of this rare condition which can be life-threatening.

What is Panhypopituitarism?

"Panhypopituitarism is a condition of inadequate or absent production of the anterior pituitary hormones. It is frequently the result of other problems that affect the pituitary gland and either reduce or destroy its function or interfere with hypothalamic secretion of the varying pituitary-releasing hormones."
"The pituitary gland is called the master endocrine gland of the body because it controls the function of other endocrine organs. The anterior pituitary produces the hormones thyrotropin (thyroid-stimulating hormone [TSH]), corticotropin (adrenocorticotropic hormone [ACTH]), luteinizing hormone (LH), follicle-stimulating hormone (FSH), growth hormone (GH), and prolactin (PRL). The anterior pituitary is controlled by specific hypothalamic-releasing hormones. The posterior pituitary produces vasopressin (antidiuretic hormone [ADH]) and oxytocin."

Wednesday, March 20, 2019

Panhypopituitarsm 101: The Basics of Panhypopituitarism by Amerman





My favourite advocate for Panhypopituitarism is Sunny Ammerman. Her videos and blog articles are insightful, educational and very easy to read. Please visit the links below to learn more about her journey with Panhypopituitarism

Watch videos by Sunny on YouTube

Read articles by Sunny on her blog, Insomnia Doodles

Wednesday, March 6, 2019

Diabetes scare


Recently I was admitted to hospital as my Blood Sugar Level (BSL) was over 30 mmol (576 mg/DL). I've had high levels (over 18-25) recently due to bad food habits. Now I'm on Bydureon injections once a week to lower my BSL. It's now down to 14-18. I often forget to test myself before a meal OR I snack too much and it gives a high reading. I need to get it down to 6-9 mmol (109-152 mg/DL)
Does anyone with Panhypopituitarism have diabetes? Do you have a problem regulating your BSL? Anyone have any advice? Other than to cut out foods that spike BSL. I'm already working on that

Friday, March 1, 2019

Overview of the Pituitary by the Australian Pituitary Foundation







(Source: Australian Pituitary Foundation )


Dr. Saima Amer, Endocrinologist Department of Diabetes & Endocrinology, Gold Coast Hospital

CONTENTS:
Feed Back Loops
Pituitary Hormones
Anterior Pituitary Hormones
Posterior Pituitary Hormones
Are there other Endocrine glands in the body?
How would I know if my pituitary gland was not functioning correctly?

The pituitary gland is the “master gland” of the body. It controls the functioning of most of the other endocrine organs of the body called “glands”. Glands are organs that produce hormones.

Hormones are chemical messengers that travel in the blood stream to reach their specific target organs, which are affected by the action of the hormone.This sounds funny. How is it that the hormones only act on certain organs/tissues when in fact, through the blood stream, they can reach every tissue of the body? To understand this, consider the analogy of a lock and key.The key would open only the lock it has been designed for. Hormones work on their target tissues or cells in the same way. They attach to receptors on the surface of the cells, and bring about a series of changes in the target cell.



The pituitary gland sits very securely in a bony pocket of the skull called the “sella turcica”. The gland is about the size of a pea. It is actually comprised of two parts. The anterior pituitary is the front part, and the posterior pituitary is the hind part of the pituitary gland. The posterior pituitary is an actual extension of neurons from the under-surface of the brain called the hypothalamus.

The function of the pituitary gland is controlled by two types of influences; mainly by the lower part of the brain called the “hypothalamus”, and via a “feed-back loop” by the hormones made by other glands of the body.




Feed Back Loops:

A feedback loop is also an interesting and important concept to understand in order to facilitate the understanding of endocrine systems. This can be best demonstrated by the example of thyroid hormones (T3 and T4) and their relationship with the pituitary hormone (TSH) which stimulates the production of thyroid hormones.

The hypothalamus, which is the lower part of the brain, produces a hormonecalled TRH (Thyrotrophin Releasing Hormone). TRH stimulates the pituitarygland to make TSH (Thyroid Stimulating Hormone) which, as its name suggests, stimulates the thyroid gland to make Thyroxine (T4). When the levels of T4 and also T3 (an active form of T4) exceed a certain limit, T4 and T3 have an inhibitory (negative) effect on both the hypothalamus as well as the pituitary gland, so that they reduce the production of TRH and TSH. This is in turn results in reduced production of T4 and T3 by the thyroid gland. When the levels of T4 and T3 drop below a certain limit, the negative effect on the hypothalamus and the pituitary goes away, resulting in increased production of both of these hormones, which then increase T4 and T3 production. This loop is orchestrated to maintain normal levels of thyroid hormones in normal individuals. Any increases or decreases are designed to meet the demands of the body at certain times. Most of us would be glad to know we don’t have to consciously think about it on a day-to- day, and hour-to- hour basis.
Pituitary Hormones:

The hormones secreted by the pituitary are generally studied best by dividing them up between those secreted by the anterior pituitary and the posterior pituitary.

Also, to understand these hormones better, we need to understand what the target glands do in response to pituitary hormones. Generally there is a cascade of hormones that is secreted. Hormones secreted by the hypothalamus control the pituitary hormones, and the pituitary hormones in turn control hormones secreted by other glands of the body. Those hormones in turn go and act on different cells and tissues of the body and cause a stream of reactions or actions that lead to some changes in the body function, be it growth, heart rate, glucose levels in blood, secretion of milk for the baby, or contraction of the uterus during labour.

The anterior pituitary makes the following hormones:
GH (Growth Hormone)
TSH (Thyroid Stimulating Hormone)
ACTH (Adrenocorticotrophic Hormone)
FSH (Follicle Stimulating Hormone)
LH (Luteinizing Hormone)
Prolactin

The posterior pituitary makes the following hormones:
Anti-Diuretic hormone (ADH, also called Vasopressin)
Oxytocin
Anterior Pituitary Hormones:
Growth Hormone

Growth hormone is secreted by pituitary cells called Somatotrophs. It is a peptide hormone. The secretion of growth hormone, like a few others is pulsatile and follows a circadian or day-night rhythm. GH levels are highest at night-time when we are asleep, and relatively lower during the day. GH secretion varies at different stages of life. Adolescents have the highest levels, followed by children,and then adults. As we age the GH levels fall off and there has been much interest in GH as an anti-aging hormone, but so far there has been no proof that it can reverse or stop the clock. GH is ketogenic, i.e. it stimulates the formation of free fatty acids, which can be used by the body as a fuel when it is deprived of glucose as a source of energy.
As the name indicates, the main function of growth hormone in children and adolescents is regulation of growth. GH does this by recruiting other hormones;mainly IGF-1 (Insulin-like Growth Factor-1) which is secreted by the liver inresponse to GH. There are many others in the family, but IGF-1 is by far the most important.
Thyroid Stimulating Hormone





Human TSH is a glycoprotein. It stimulates the thyroid gland to produce thyroxine, which is a hormone that has wide spread implications for metabolism in the body. Absence of thyroxine is incompatible with life. Patients with pituitary problems, who lose the function of TSH, have to have thyroxine replacement life-long. Thyroid hormone or thyroxine increases mental alertness,heart rate, motion of the gastrointestinal tract, breathing drive, as well as brain development and skeletal maturation in the foetus.




ACTH (Adreno Corticotrophic Hormone)

ACTH is secreted by pituitary cells called corticotrophs. The hormone stimulates the adrenal glands to make cortisol, which is the natural steroid our bodies make. The adrenal glands are two small glands, one on top of each of our kidneys. They make other hormones in addition to cortisol, but for the purposes of this article we will not discuss those hormones as they are not under the control of the pituitary gland. Cortisol is essential for survival; absence of cortisol is incompatible with life.


One of the interesting, as well as very important aspects of steroid secretion is that steroids are secreted by theadrenal glands in the form of pulses, in a circadian rhythm. The maximum secretion of steroids happens around the early hours of the morning and reachesa peak generally when we wake up.Afterwards the levels of steroids slowly come down during the day as the sun goes down. Changes in ACTH secretion through the day govern this day-night cycle of steroid secretion.

Note that patients who take steroids due to pituitary or other diseases have theirmaximum dose first thing in the morning, and progressively lesser doses during the day. This is because we are trying to mimic the natural cycle.

Steroids maintain normal blood pressure, increase protein and fat metabolism,and increase blood glucose levels. Externally administered steroids can make diabetes worse. They generally suppress the immune system. They can stop the bone-building cells, resulting in osteoporosis, a condition resulting in weak bones and susceptibility to fractures due to a low level of trauma. Steroids have effects on mood, and play important roles in growth and development. Different factors can have an impact on the amount of steroids the body needs or secretes.Stress, both physical and emotional, results in increased steroid levels. Infection,inflammation and low blood glucose levels can all increase the steroid production by the body, provided all the feedback circuits are working normally. In patients with a deficiency of ACTH, the ability to increase steroid production is absent,therefore patients are asked to increase the dose of their steroids when they are ill or have elective surgery etc.




FSH (Follicle Stimulating Hormone) and LH (Luteinizing Hormone)

These two hormones are best described together as they have actions very closely related. These are stimulated by a hypothalamic hormone called GnRH(Gonadotrophin Releasing Hormone). These control the ovarian function,formation of follicles and hence eggs (ova), and maintenance of the female reproductive cycle in females. They stimulate formation of testosterone and sperm production in males. In females FSH stimulates the development of the follicles in a cyclical manner. The follicle then produces oestrogen. In men FSH stimulates the production of sperm. LH is responsible for causing ovulation in females, and in men production of testosterone.
Prolactin

It is secreted by the pituitary cells called lactotrophs, and causes milk secretion from the breast after oestrogen and progesterone priming during pregnancy. Prolactin also inhibits the secretion of gonadotrophins (the hormone responsible for pituitary secretion of FSH and LH). Therefore some patients with prolactin-secreting tumours can present with irregular cycles, or infertility, or low testosterone levels. Its secretion is increased by exercise, surgical and psychological stresses, and stimulation of the nipple. Secretion is increased during pregnancy, reaching a peak at the time of child birth. Interestingly prolactin is under an inhibitory control, i.e. dopamine. This factor secreted by the hypothalamus inhibits the secretion of prolactin. Hence, if due to a tumour the pituitary stalk is compressed, prolactin levels rise as thinhibitory signal is removed.
Posterior Pituitary Hormones:
Vasopressin (Anti-Diuretic Hormone, ADH)

ADH is secreted in response to high serum osmolality (Na) or low bloodpressure. It works on the kidneys to conserve water, hence restoring osmolality.It also works on the blood vessels to increase blood pressure.
Oxytocin

It is released during labour and increases uterine contractions at the time ofdelivery. It also causes the ejection of milk from the breast by causing contraction of the myo-epithelial cells. It is the hormone that is used in the form of a drip to induce labour in women who do not enter into labour naturally, and is commonly known as a “Syntocinon” drip.

Are there other Endocrine glands in the body?

Yes. Other glands in the body include the four parathyroid glands for calcium production, the pancreas gland for insulin production, and the central parts of the adrenal glands which produce adrenalin and nor adrenaline. These glands do not need the pituitary gland to give them messages to make their hormones, they are dependant on other chemical or neurological control, but they are partof the endocrine system.
How would I know if my pituitary gland was not functioning correctly?

Pituitary gland hormones, through their target glands and hormones secreted from the target glands, control a wide range of body functions. Most of these are essential for normal growth, metabolism and reproduction. Deficiency or excess of these hormones can therefore lead to a wide range of problems.

There are a variety of things which may happen. Usually more than one physical sign or sympton (feeling) may be found.In children and adolescents, linear growth and puberty are dependant on hormal signals from the hypothalamus and pituitary gland, and therefore problems in this hormal axis may become manifest as problems in linear growth and acquisition of puberty.

In women of reproductive age, problems with monthly cycles, and fertility can be the first sign of pituitary problems. A wide variety of symptoms including but not limited to weight and appetite changes, and changes in skin, vision, mood, general well being can be due to pituitary problems. These signs and symptoms may occur because of the target organs not working effectively and not be the fault of the pituitary gland itself.

The expression “we are slaves to our hormones” is one that people with an imbalance of the endocrine system can relate to very well. Your GP would generally look at more common problems first before considering any pituitary problem as the underlying reason. Your endocrinologist (hormone specialist), after careful questioning of your symptoms, and a check for subtle body changes, may request special tests to diagnose if you have a problem with any part of your endocrine system.

Illustrations © Kathryn Skelsey (HealthArt Illustration)
Reviewed: March 2013

Rare Disease Day #panhypopituitarism


I have a rare disease. It is called CPHP (Congenital Panhypopituitarism ) and in my case was caused by an underdeveloped Pituitary Gland and PSIS (Pituitary Stalk Interruption Syndrome) due to low levels of Growth Hormone in the womb.
I take Cortisone/ Prednisone plus Throxine since I was diagnosed age 13. It has a huge impact on my health as my pituitary doesn’t work properly so I don’t produce Cortisone , male and female hormones or growth hormone. I reached 154cm after three (3) years on Growth Hormone injections- aged 16-19 years
. I didn’t develop naturally and went on HRT (Hormone replacement therapy ) aged 20 when I stopped growing. Until then I had a pre-pubescent body. I was told it was very unlikely that I would fall pregnant and carry a child to term. I went off HRT aged 24 when on my honeymoon since the Endocrinologist said my body might kick in and start producing male and female hormones. It didn’t and I went through change of life / menopause - which was devastating.
Cortisone is an immunosuppressive which means I have to be vigilant when it comes to staving off colds and flu plus I heal slower than most people plus infections last longer. I have to be careful not to become dehydrated or lower electrolyte levels or I can fall in a heap.
When I was first diagnosed at age 13 the words Addison’s Disease (secondary) were added next to my name and I knew my life would never be the same. My Endocrinologist Dr Ray Slobodnuik (deceased) told me to research Endocrinology and arm myself with knowledge on how to keep myself well and know when to stress dose or go to hospital.
Before I was diagnosed I had severe pain I the abdomen and was scheduled for an appendectomy as we thought I had appendicitis. The put me on the drip (saline infusion) and after a while, the pain went away. They were insistent that I was just afraid of the operation but thankfully mum believed me and the operation was called off. I was in adrenal crisis and I could have died if operated on.
When I was diagnosed aged 13 they did a bone age scan which showed my bone age was 3 years below my chronological age. This explains why I was always 2-3 years shorter than my peers.
It’s been an interesting 47 years and I wouldn’t be alive today if not for my mothers fierce material instinct and taking me to many doctors before someone referred me to an Endocrinologist in 1984.