Brazilian pituitary issue

Hormones
1

Hello,

Obs: I write this originally in Portuguese and translated very quickly, I apologize for orthographic and grammar errors.  

Could you help me with a pituitary problem? Is a lot of data.

Is my former wife,  she is a Brazilian, 40 years, works as a teacher.

About 5'4" and 98 kg. Actually I think is more water (swelling) than fat.

 

Symptoms:

- Sleep problem: She changes day/night periods, got better with Melanin but nowadays she wants to sleep all the day (sleepless and very tired). Yesterday a neurologist said that she had  narcolepsy and order some tests. In blood tests all were negative. She don´t want to have the liquor test (pain).

- Eye problems: The vision has worsened, even with glasses.

- Swelling: Mainly legs and feet. She drinks a lot of water. In some days sweats a lot (more common) and other days simply no sweats. Her sense of hot/cold climate don´t match with mine.

- She made the diabetes insipidus test. Was inconclusive...

- Memory problems: Some days she has problems with her short-term memories, acting dizzy.  

- Bone problems: She have a bunion problem and this is getting worse, in fact look likes her feet are growing. She thinks the problem is just the bunion, but for me her feet are enormous. She used to wear 7,5 but now she need to buy 8,5 or even 9 shoes!

Besides this she has back pain and went to a doctor who says the cause is an extra bone in the spine, he said that this is not unusual. The problem is she was in a car accident with a neck injury, when she was 18. And then no one saw this extra bone.

High GH?

- Metabolic syndrome:high fat mass, high triglycerides, metabolic syndrome and glucose intolerance. 

 Low GH?

 

- I never figured that, her GH production may have experienced high variations ??? She had a lot of tests, but, i don´t know why, never has been tested for GH. 

-Liver: Her liver is not ok, have a serious steatosis and the numbers are Ferritin 147, Gama GT 44, TGO 66 and TGP 102.

- She always have bad numbers in prolactin, the last was 40.5. The doctors said that was a depression medicine issue. She has clinical depression (but stopped the medicine an year ago, now uses Hypericum).

- The T4 levels are always close to the limit, yesterday the T4 free was 0.81. She uses levothyroxine sodium, 75mgc- She had yesterday a PCR test. 14.9 mg/L !!!- DEHIDROEPIANDROSTERONA, SULPHET   34.2 microg/dL

-All cancer marks were negative.

- She had tested for dozens of hormones and elements, if you want to know more I can send later.

Well, all point to Pituitary, right?

She had a RMI in 2013, they found a small cyst on the pituitary. All doctors said it is so small to damage the pituitary. But the symptoms were there. And nowadays all symptoms are worst. She repeated the RMI, the results are below.

The doctors say that is a so small cyst, only 3mm, and can´t damage the glandule. I am a engineer, for me a thing of 3 mm inside of a 10 mm mass is important. 30% is huge!  Or not?

I know that all the symptoms can be answered by two or three more common problems (almost all say is because she is fat – I ask, why she is fat; other say about diabetes and I say why is glucose intolerant?).

She has a small cyst in the pituitary; this is not a sufficient cause?

 Can you explain what she has?

Thank You,

 

Luciano Basso

 

 

RM SADDLE / pituitary

RESONANCE SADDLE TURKISH

 

Method:

 

Examination with FSE sequences in T1 in the coronal and sagittal planes, with 1.7 and 2.5 mm in width, after administration of intravenous paramagnetic contrast (gadolinium).

Study supplemented with cuts in T2, the ESF sequence in the plan coronal.

Held FLAIR sequence in the axial plane for further evaluation of brain.

 

Analysis:

 

Seal cavity shape and dimensions preserved.

Compatible with a small cyst in protein content, characterized by isosignal T1 and hypointense on T2 marked measuring about 0.3 cm, interposed between the anterior and posterior lobes of hypophysis.

Posterior lobe of topography and intensity of normal signal.

Pituitary stalk centered and preserved caliber.

Suprasellar cistern free.

Optic chiasm uncompressed signals.

Cavernous sinus and opaque with no apparent injury.

 

OPINION:

Findings consistent with small cyst pars intermedia, displaying high protein content.

 

There were characterized changes to the inspection of a 11/07/2013.

 

Note: Rare hyperintense foci on FLAIR white matter supratentorial, nonspecific. Small arachnoid cyst in the fossa left middle cranial. Dig the persistence of the septum pellucidum and vergae (anatomical variation).

2

Gee, I hope someone is able to help you and your wife.  It does not appear to me that the drs are doing the right tests nor interpreting results.

I can only speak from experience.  I experienced constant terrible head and face sweats for 6 years before someone thought it would be a good idea to refer me to an endocrinologist.  Tests were done on ALL endrocrine hormones.  Prolactin and Growth Hormone were high.  After further tests, the Growth Hormone was deemed to be just borderline (high), but prolactin was too high.  After an MRI, I too, was found to have what they referred to as microadenoma (small tumour) on my pituitary gland.  The excess prolactin was indirectly making my oestrogen ineffective causing severe menopause symptoms (hence the head sweats).

I can't quote tumour size from memory.  But "micro" explains it, and it had an enormous affect on my health.

I have haemochromatosis which can, among other organs, affect the pituitary gland.  Ask for Iron Studies, then a genetic test to help eliminate this.  I attended a conference on hereditary haemochromatosis where a speaker from Portugal talked about the high incidence of HH that has been uncovered in Portugal.

Because I was also found to have severe arrythmia, I was given first beta blockers which sent my brain into a fog to the point of dementia (bad for those with haemochromatosis, it dilates the blood vessels and lets the iron into the brain), then calcium channel blockers which made my prolactin rocket to >4000.  Gross stupidity in action.

I believe low Growth Hormone causes obesity.  There is Paget's Disease in my family which causes extra bone growth.

Whenever I try to reduce the medication for prolactinoma, I get menopausal symptoms.  I am sensitive to temperatures too - I can be too hot when it is cold, and shivering violently when it is hot.  The hypothalamus is responsible for controlling or balancing our internal thermometer so I believe my hypothalamus has been damaged too.

Fatigue is also a major factor in my life, but supposedly from having haemochromatosis even though I have been de-ironed.

I hope some of my experience can help you find the answers.  Ask for copies of all tests (which sounds like you do), ask for 2nd opinions and be assertive.

Good luck

3

Luciano,  I just read the following:  I think it is very relevant to your wife's situation.

"What could go wrong with my hypothalamus?

Hypothalamic function can be affected by head trauma, brain tumours, infection, surgery, radiation and malnutrition.  It can lead to disorders of energy balance and thermoregulation, disorganised body rhythms, (insomnia) and symptoms of pituitary deficiency due to loss of hypothalamic control.  Pituitary deficiency (hypopituitarism) ultimately causes a deficiency of hormones produced by the gonads, adrenal cortex and thyroid gland as well as loss of growth hormone.

Lack of anti-diuretic hormone production by the hypothalamus causes diabetes insipidus.  In this condition the kidneys are unable to reabsorb water which leads to excessive production of dilute urine and very large amounts of drinking."

 

4

hi

just a few suggestions to discuss with your doctor.

first of all, if there is a problem with very high growth hormone due to a pituitary tumour then the more reliable blood test is IGF-1. this is becasue IGF-1 is made by GH and its levels are almost stable throughout the day. But GH blood values change throughout the day therefore sometimes can be high and sometimes can be low.

how are your wife's hands? can she still wear the rings that she used to wear a couple of years ago? if not then another reason to consider high GH.

your doctor's point of view seems to be that a small cyst might not cause a problem but the big hormone producing tumours start small and it is better to catch them when they are small instead of waiting for them to grow.

is there a portuguese pituitary foundation that produces information which cuold help? other wise, try the pituitary foundation, based here in the UK. they have a website which has some useful documentation including a booklet aimed at doctors, which might be of help to you.

good luck with finding a solution for this.

the problem is that pituitary problems are so rare that many doctors have no experience of dealing with them.

5

Hi

I myself have 2 microedonoma. Both r of micro size and currently on medication to shrink it. My tumors are functioning tumor which secrete or produce excess harmones.so even if its small not damaging surrounding area but was producing excess Harmone prolactine and gh. Their excess qty create difficulties and require treatment.

If it is non functioning tumor than no treatment is initiated unless it shows any symptoms. Non functioning tumor problem is only due to its location if its near optic nerve or other sensitive area then doctors take it serious otherwise not.

Ur wife case seemed to be of a functioning tumor secreting gh harmone. Excess Growth harmone (GH) causes symptoms highlighted by u. Enlarged hands, feets, bones, muscles, resulting increased shoe size, ring size etc. Which means tumor is secreting/ producing harmone, its active. So it should be better treated on time. Disease of getting enlarged bones and organs due to excess production of gh is called Acremgaly. In such case size of tumor doesnt matter. And first line of treatment in such case is always surgery and then second is medication. Treatment may vary case to case.

You better consult a good endocronologist or endo-neuro. Take 2 opinions at least. And its treatable so no need to take any sort of tension.

Sorry for the grammer. I hope ull manage to understand.

With Best wishes

Reema