18 Months ago whilst pregnant with my 3rd child I felt really unwell, was sweating from my hands and around my mouth. My
midwife carried out routine bloods which all come back normal and put this down to my pregnancy. 2 days after my child was
born (by elective c - section) I had a 'funny turn' - felt strange sensation through my body, dizzy and weak and
the sweating came back. I was told this would be my hormones after the delivery.
Four months later I experienced another funny turn along with chest pain and a racing heart. I was admitted into hospital
and cardiac tests were carried out along with routine bloods, all these came back normal. When discharged I felt really
weak, clammy and faint - nearly collapsed at the entrance. I recovered from this but never really felt 'well'. I
found I was feeling quite anxious, tired,and didn't respond well to stress. I put this down to having 3 young children.
Three months ago I began experiencing palpatations - which made nearly pass out accompanied by loose bowel motions and what I
can only describe as a horrible strong rush downwards through my body. I was told I was experiencing etopic heartbeats and
they were nothing to worry about.
Then 8 weeks ago I was in work (i'm a Plebotomist) and I felt really unwell. I collected my daughter from school and
went shopping with her. I ended up Being taken by ambulance to hospital......I was tachycardic and felt like I was going to
collapse. Since that day I have not been well.
I was in hospital for 7 weeks and then a further 2 days. Whilst there I became really unwell, nauseas, tachycardic, raised
blood pressure and pulse on standing, really weak and shaky feeeling, eyes seeming sensitive to my surroundings, clammy hands
and feet, had chest pain and palpatations, had hypoglycemic attacks, blue finger and toe nails, and my T waves have inverted.
B12 borderline deficient ( i had injection a week before I became ill), low folic acid and low iron stores (not hb). They
carried out many many tests including endocrine tests, they were sure I had a condition related to my adrenal glands - mainly
addisons. But all tests came back normal!! They found out I had coeliac disease and put this down as the culprit, then as I
never really improved changing my diet they backtracked. I have lost approx 20 ponds in weight, whether this is due to being
unwell or caused by what ever is wrong I am unsure - maybe its the diet!! I was transfered to a cardiac ward for tests. I
had an echo a stress echo, a treadmill test and a tilt table test. The consultant said my heart was strong but something was
upsetting it but he didn't know what. The only test that came back with any abnormal reading was the tilt test. My
heart beat rose from 90 to 140, I was tilted for 30 minutes. (I was really weak and unwell at the time of this test and had
no strength to stand so I am unsure if this effected these results.) They then diagnosed me with Postural Orthostatic
Tachycardia Syndrome. A week later I was told that I did not have POTS my bodys reaction was normal in the unwell.
I then pushed for a MRI scan of my adrenal glands. This showed a growth measuring 1 cm. I was then told that they had found
what was wrong and they can now help me. But the endocrine doctor came and said this was not functioning so it was not
causing my illness. He said they had done 4 24 hr urine collections when I was admitted and these were within normal ranges,
they had also had done cortisol and hormone bloodwork. They carried out a serum cortisol test using dexamesthone (unsure of
spelling!!) as a suppression - this showed low cortisol which they said was normal when using this suppresion drug. They are
going to re-scan in several months. At this point I was extremely upset, unwell and disheartened. I was told they may never
get to the bottom of my illness!!!
They started me on Fludrocortisone 100mcg and bisoprolol 2.5mg, and sent me home. I do not feel as weak and unwell at the
moment and am unsure whether this is through the steroid or my body trying to help itself as I was feeling a little stronger
before starting the meds. My home GP took me off the Bisoprololas the chest pains and palpatations I was having were
increasing.
Several days ago I had another funny turn which left me weak internally shaky. Then 2 days later I was re-admitted into
hospital as my heart was beating irregular and erratic. It was jumping from 60bpm to 100bpm and up and down. This happened
again through the night and woke me from my sleep, my hands and face were sweating. By the time I got to see my consultant
this had calmed down. They then put me on a recording monitor but as this did not happen again they did not catch it. They
again said they don't know whats wrong and I will have to live with it. I asked them about the growth, they said they
think thats fine. I asked them about POTS they said they don't know if I have this or not. So I asked if they would do
more tests to try and confirm this and their reply was they do not need to at this point!!! I feel they are missing something
or do not really know what to do!!! One doctor increased the Fludrocortisone. Another decreased it again. Then they
prescibed Ivabadine - then another doctor said no I was not to have it!! I am about to despair. I have been told that they
are going to follow me up but I feel like they have given up on me. I am now trying to be my own advocate.
I am no longer tachycardic on standing and am thinking maybe this symptom was increased due to being in bed for many weeks.
So I am not convinced on the POTS theory, also my symptoms are triggered supine as well as standing, I just don't seem
to fit. I have looked into Pheochromocytoma which my symptoms indicate (apart from the fact that my bp is not raised) - but
my consultant says he would have picked this up through urine tests for metaphrines. I have spoken to people with this
tumour and they to had a hard journey getting correctly diagnosed.
Truth is i haven't a clue whats wrong with me except that I am a single parent with a 1yr old a 2 yr old and a 7yr old
so desperately need to be diagnosed and hopefully get well.
My past medical history includes tonsillectomy and adenoid removal - 1990. 2 x surgery for cholesteatoma - 1993. 3 x c -
section - 2002, 2006, 2008. Previous aneamia. Hepb vaccine april this year. I am a 30 year old female. Other than this I
have been well.
