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khagihara
khagihara, Doctor
Category: Medical
Satisfied Customers: 5610
Experience:  Trained in the multiple medical fields for many years.
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My daughter (age 24) has a pituitary microadenoma approx 5.3

Resolved Question:

My daughter (age 24) has a pituitary microadenoma approx 5.3 mm at last MRI in February with a possible second lesion in the sphenoid sinus. At the time her prolactin level was approx 1800 but since then the marker has increased to 4600 (October). She has multiple health problems: compression of the coeliac artery confirmed with Doppler ultrasound and CT scan, and gastroparesis (last emptying study showed 168 minutes to begin emptying). As a consequence she has daily gastric pain, sometimes acute, and permanent nausea with occasional vomiting. As a result, she is very thin; her weight is fairly constant at 42 kg (height 172 cm). Other than that she keeps good health (takes very great care of herself as far as she is able) and regular blood tests show all her blood chemistry including albumin, haemoglobin within normal parameters. She is osteoporotic (–3.5) and is receiving Prolia to treat this. Her other medications include domperidone (x 4–5 per day) and metoclopramide, which accounts for some of the increased prolactin but nowhere near all. Medications to reduce the prolactinoma made her catastrophically ill. The problem is that last year she was admitted to hospital with a presumptive diagnosis of anorexia, although she was discharged after two weeks after it was concluded that she was not. Unfortunately, she was very badly treated while in hospital, including mismanagement of a feeding regime which caused a phosphate crash that went undiagnosed and untreated for six days. The problem that she has is that all the specialists who have been involved in her treatment have her notes with "discharged EDNOS" written on them and they do not want to treat her. She is feeling desperate because every day she struggles to keep enough food down and is in constant pain. However her veracity is continually challenged, even though the psychiatric consultant at the hospital has said that he doesn't think she has anorexia. I frequently observe her completely involuntary bouts of vomiting and the efforts she has to go to to manage her condition. Can you advise at what level you think a "wait and watch" management approach regarding the prolactinoma becomes unwise? I feel as if the doctors are simply sitting on their hands because she has the "anorexia" tag on her file.
Submitted: 8 months ago.
Category: Medical
Expert:  khagihara replied 8 months ago.

khagihara :

Since domperidone and metoclopramideher do not work well, she should also take erythromycin. If they don't work, she should have a percutanous venting gastrostomy tube to decompress the the upper GI tract and a percutanous jejunostomy tube to provide nutrition. Another option is gastric electrical stimulation (http://archsurg.jamanetwork.com/article.aspx?articleid=508894). The prolactin level is too high as the side effect of the medications.

khagihara :

Any questions?

Customer:

I had not heard of erythromycin as a stimulant for gastric motility but have since looked it up, so thank you! One possible suggestion has been to release the median arcuate ligament that is causing the coeliac artery compression, which is a bit different from the venting gastrostomy tube you have recommended. Do you have any thoughts on that? My daughter was referred to an upper GI surgeon who initially was willing to do this procedure but then read the notes, decided my daughter was anorexic and has refused to treat her. A gastric pacer is another treatment we have heard of, and this may be one part of her overall treatment. The thing that is most worrying at this point is the rapid increase in prolactin (nearly doubled in ten weeks) even though her intake of domperidone and metoclopramide has remained fairly constant for the last year. Yet her endocrinologist said she was anorexic and would not treat her either. We are beginning to feel that my daughter is being victimised because of this presumptive diagnosis of anorexia and that her very real, fully documented health problems are being ignored. What would be helpful and would give her confidence to continue seeking treatment would be some indication of the level of prolactin that would unequivocally require treatment. My daughter is courageous and strong, but being continually treated as if she has no veracity when she is in fact suffering a great deal and struggles to maintain her studies (she is a final year graduate medical student) causes me to fear that she will one day give up trying to eat and simply die.

khagihara :

Cabergoline for prolactinoma cause less side effects such as nausea if the dose is gradually increased.

khagihara :

Releasing the median arcuate ligament may be tried if the cause is not known in anywhere else.

Customer:

She was given a trial of Cabergoline but it worsened the nausea to a dangerous level. Also bromocryptine, with the same results.
On the Doppler ultrasound there was a distinct kink in the coeliac artery with impaired flow beyond, which was confirmed by a CT scan. Are there other causes that would give these findings?

khagihara :

Gastrostomy and jenunostomy let her problem relived and gain weight.

Customer:

Flow in the mesenteric artery was unimpaired.

khagihara :

daibetes, neurological disorders.

Customer:

I have understood that while weight gain will relieve mesenteric compression, it will not help coeliac compression. Her serum glucose is usually around 4.5 (sometimes less) so I don't think diabetes is a likely cause. What neurological disorders would be involved in coeliac compression?

khagihara :

They are not involved in it.

Customer:

Her father had a similar condition, although nowhere near as severe. Can structural GI problems be inherited?

Customer:

I had understood from your answer "diabetes, neurological disorders" was in response to my question "Are there other causes that would give these findings?

khagihara :

autoimmune disease, postsurgery,

khagihara :

mesenteric icschemia

Customer:

If it were autoimmune disease, what antibodies would you expect to find elevated?

Customer:

Mesenteric ischaemia was discounted because the flow in the mesenteric artery was unimpaired.

khagihara :

scleroderma if she has symptoms

Customer:

She has not had any surgery. Nor does she have anything suggesting scleroderma, although she does have lumpy rheumatoid knuckles and occasional pain and swelling in knee joints.

khagihara :

medications if she takes any other ones

khagihara :

modt common one is idiopathic

Customer:

The meds listed are all she takes. Liquid paracetamol when the gastric pain is too severe. She does not tolerate codeine.

khagihara :

amyloidosis and stress also cause it.

khagihara :

multiple sclerosis, too.

Customer:

If the coeliac compression is idiopathic, what is most likely to produce the best outcome? My daughter is resigned to the fact that she is unlikely to ever have complete control of her symptoms , but even half remission would be very good.

Customer:

I appreciate that endocrinology is not your specialisation, but I would really like some information on just how high her prolactin level can go before someone is stirred into action.

khagihara :

In celiac artery compression syndrome, the superior mesenteric artery (SMA) and the inferior mesenteric artery are widely patent, thereby, in theory, providing an ample blood supply to the bowel

khagihara :

Some have suggested the symptoms may not be related to blood flow but rather to involvement of the splanchnic nerve plexus, Others have demonstrated an association with celiac artery compression and delayed gastric emptying, suggesting another possible cause of symptoms.

khagihara :

Therefore releasing the compression could improve her symptoms.

Customer:

So the coeliac compression really needs to be resolved before taking the step of gastic pacing?

khagihara :

It is worth trying it.

Customer:

Thank you. Now all she needs is a surgeon who doesn't try to have her committed.

Customer:

Do you have any comments on prolactin levels? "No" is an OK answer if it is outside your specialisation.

khagihara :

Prolactinoma doesn't cause nausea. Once the compress is released, she could take the medication.

khagihara :

for prolactinoma.

Customer:

True.

khagihara :

Any questions?

Customer:

No, I think that about covers it. Thank you very much

khagihara :

Are you satisfied with my answer?

Customer:

Yes I am. Thank you

khagihara :

You are welcome.

khagihara, Doctor
Category: Medical
Satisfied Customers: 5610
Experience: Trained in the multiple medical fields for many years.
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