Addison Crisis – off we go!

Addison Crisis – off we go!

The sub title to this post should read “and the complete incompetence of the Danish health system” but since l am a really nice person and do not like to get people angry or agitated l will refrain and just tell you what happened.

l have been waiting for a SPECT scan for the longest.
You might wonder why on earth l havent had one done yet and that will bring me back to the missing sub-title.

I Denmark we have all medical care included in out taxes.
Which is great.
It means however that One cant just get whatever tests done you want done, and there is no option to pay for having them done.
It is 100% down to the specialists to decide what test they want you to have.

When you have hit your head they will give you CT and MRI scans to determine if you have bleedings or tumors.
If you dont, well then you are fine!
Its just a matter of time.
You will heal.
It will all get better.
You just have to be patient (pun intented)

If however (as in my case) you do not get better but everything actually escalates and get worse, they might give you another CT or MRI to establish if a bleeding or a tumor has occurred since they last checked.

If it hasn´t or if longer than 6 months has passed and you are still getting worse then your condition is deemed psycosomatic.

Yes! TBI is not acknowledge in Denmark to be anything but psychosomatic!

l can get all the psykological therapy sessions l want.
I can however not get a SPECT scan that would determine if l have areas in my brain that is lacking oxygen and therefore causing my rapid deterioration.

How do l know?

Well, l became more and more aware that there was someting horrible wrong.

(And please keep in mind; l have no recollection of whatever happened last week so becoming aware is a very difficult situation since l have nothing to compare to.)

Anyway – l became aware that something was wrong. Something that highly resembled 2nd Addisons disease and hypothyroidism.

At that point l had been treated for migraines with Sumatriptan for 4 years. They did not help! and after my relapse in ´16 where l spent 1,5 year with “migraine” in quiet darkness at my dads summerhouse, you know; out in the woods, with no neighbours, no internet, no phonesignal, no radio, no tv, in complete isolation so there would be no disturbances and still had 260 days with “migraine” in 2016 we knew there were something really wrong!

It was horrible!

l couldnt walk because my balance was off. I was bruised up and down my body not remembering why or what had happened and only assuming that l must have fallen.

l couldnt eat due to nausea and when l did l was vomiting.

l was incontinent, and not the “uh didnt make it” kind of incontinence but the “sitting here in the chair and peeing myself” kind of incontinence.

l had seizures several times a week. I was fully conscious, the entire body shaking and just lying there not being able to do anything but controle my breathing.

and l was in so much pain.
My head, my stomach, my intestines, my muscles, my joints… so much pain…

and at no point did anyone think of Addisons.
I got TBI so therefore it must be psychosomatic!

When Lincoln finally insisted on me having my endocrine system testet it got denied.
There was no foundation in making any hypopituitary testing since l didnt have any bleeding or tumors.

So Lincoln started a GoFundMe to get me to Austria where l could have all tests done + being treated for TBI.

He raised enough money for us to go there, me having the relevant tests done and receiving one treatment.

Of course all my markers were off.

I clearly had hypopituitarism, 2nd Addisons and hypothyroidsm.

When l came back l went to my GP that had refused the testing in the first place, he looked at the results and said “we better send you to an endocrinologist that can test you for hypopituitarism, 2nd Addisons and hypothyroidsm” EVEN THOUGH the tests in his hand clearly stated that l had all of the above.

Now you might think we are getting to the point of me having the darn SPECT scan?

Well no!

You see, a SPECT scan is to check neurological issues.
The endocrinologists only look at hormonal issues.

So for the last year l have been trying to get a SPECT scan but being told that we need to sort out the endo-issues first.

They have now several times made the tests l had made in Austria and have now concluded that l have 2nd Addisons and hypothyroidsm.
Not hypopituritism.
All the hormones that are displaying a hypopiturism are low: FSH, LH, testosterone, oestrogen, DHEA, pregnenolone all of them almost non existing.. so why dont they think l have hypopiturism?
Well because the CT scan from 2016 clearly shows l dont have a tumor or a bleeding!

Yes! l kid you not!

A SPECT scan would once and for all determine what areas of my brain are lacking oxygen and that l have hypopituritism.

So all this gets me to this Monday.
Me at my GPs office. He is preparing me for the SPECT scan. The plan is that he will send me to the hospital on Wednesday to get it.

My GP tells me that l have to stop taking my hydrocortisone 48 hours before the scan because they suspect l have brain swelling and the HC reduces the swelling so to get the best picture of what is going on l should stop taking my HC.

l ask him if he is sure since l know exactly how it is to be me every single morning when l wake up after 9 hours without HC. But he is sure. I need 48 hours off HC to have a proper SPECT scan.

24 hours later l am picked up by the ambulance, taken to hospital, getting HC i.v. and the scan is postponed until October!

“Why!?” – you might ask
“How can they bump you down the waiting list when you had a slot for a SPECT?”

Well, its because l was in the hospital for an endocrinological issue – Addisons.
The SPECT scan is a neurological issue.
Different department.

Isnt it crazy that l am at this point almost bummed about not having a brain tumor?

Anyway… my plan is now to:

1. win the lottery
2. go to England
3. get an appointment with a neurologist
4. get a referral to a SPECT scan
5. have the SPECT scan
6. have final consultation with the English neurologist that will suggest treatment plan
7. go back to Denmark
8. have a consultation with a danish neurologist
9. show him the SPECT scan result and the treatment plan from the English neurologist
10. have him refer me to a SPECT scan here in Denmark so
11. my condition finally can get acknowledged and l can start treatment….

oh yeah… and

12. world peace.

Thats all l want…