Prolactinoma recurrence

[icky]

Hello. Has anyone else with a prolactinoma had it treated and it has grown again. I had one about 8 years ago. It was shrunk by drugs and I ended up taking Hydrocortisone, Thyroxine, Cabergoline, HGH & Nebido. This treatment was going very well until about 3 months ago when I became very fatigued and tired. Blood tests showed the pituitatry remnants were producing increasing amounts of prolactine and my cabergoline dose was doubled. I don't find I am any better though and I am suffering from a bad headache about 80% of the time similar to the one I had during my original illness. I'm worried that the tumour has reared its head again. Until I see the doc again next week it's going to concern me. Anyone else had a recurrence?

[robjmann]

Sorry for the delay in responding to your post Icky.
I was first diagnosed with a macro-prolactinoma about 3 years ago and was initially treated with Cabergoline, which worked in respect of reducing my prolactin level down from 11,500 to under 200. Scans also showed some shrinkage in the tumour and my pain around the right eye lessened considerably.
Unfortunately the side-effect of this drug made me very light-headed all the time - the same sensation as standing up too quickly (blood rush).
After consultation at about six months into treatment, my medication was changed to Quinagolide. I got on well with this for about 12 months, although scans showed small regrowth in the tumour and some occasional bleeding, the prolactin and other hormone levels stayed within bounds.
It was approx.14 months ago that I started having very severe headaches and nausia. My sleep patterns were all over the place, lost my appetite and suffered very low moods.
Another consultation followed scans, and the dose of Quinagolide was doubled (as prolactin levels had increased slightly and the tumour was still the same size but showing signs of haemorraging). This had an immediate short term effect, but things have gone downhill again over the last 3-4 months - same symptoms as before, but the low moods and lack of motivation are the worst.
Surgery was discussed back in July 2010, but was put on the backburner at my last consult in October for reasons I am still not too sure about, except that everyone seems to think its a last resort.
I have recontacted my endochrinologist and a further scan is being fixed up prior to seeing him again ASAP - the symptoms remain although the headaches are less frequent but still as intense. I don't want to pop strong painkillers all the time as they wipe me out for up to 12 hours at a time.
I am almost resigned to going under the knife and all that brings with it in post op. but lets see what happens next.
Hope this posting helps, but I've just read it back and it seems like a big whinge to me!
Rob

[icky]

Hi Robjmann ! If you think that's a big whinge then sit back and read this. After 8 years of living easy with my hypopituitarism I was found to have raised prolactin levels which needed attention. I was also found, just before Christmas, to have a heart defect which needed immediate attention. I also had pulmonary oedema which was treated. I was told late on Christmas eve that I was to go in immediatly after the holiday and get a pacemaker installed. This was done. Although the pacemaker has been proved to be ok I am still very, very exhausted during the day and capable of instant sleep wherever I am. I become very short of breath after the slightest exertion. My prolactin level continued to rise even after doubing rge cabergolin. Consequently I have had my HGH stopped for a while and my Cabergoline swapped for Quinagolide. I don't know, and no-one can tell me, why I am so exhausted and short of breath all the time. My lungs are now clear of the oedema. Anyone had any similar experiences? I haven't seen any references on the internet as to whether increased prolactin levels can cause tiredness. I'm seeing my endocrinologist early next month. I hope he can sort it out. I have an appointment at the sleep clinic later on next month to see if I have a problem there.

[bazhaney]

hi robjmann.just read your post,its not a whinge ,after reading yours i started to think about mine ,and last 4 months have started to go through same symptoms,just got back from my sustanon inj at doc's and there asking if i should go to 2 weekly injections as my fatigue is getting worse ,my get up and go ,has got up and gone ?? headaches back sleeping for about 2-3 hrs a night but always tired.have put yet another stone on since last month yet not eating...........got to go get bloods done in morning.was changed from bromocriptine 3 months ago because of voilent headaches,now on cabergoline,moods swings starting again.last couple of MRI scans still same size,25mm x 20mm x 20mm so not shrinking ,when i mentioned to endo ,said 80% of people are fat in this country ,so dont worry about it....?yet my gp,(who has 3 patients with this )not happy.have had this macro-prolatinoma for 3 yrs aswell.

[robjmann]

Hi Icky and Baz,
Nice to see people are checking in on the forum. Both of you seem to have a number of similar symptoms to me, each other and several of the contributors to the discussion boards (I have now read most of the posts since the forum reopened).
I am beginning to think that the so called experts should read the board here to assimilate information on the common factors experienced before and after diagnosis with pituitary problems. Especially those GP's who are all too willing to dole out anti-depressants or pass off the weight gain as a lack of exercise or overeating.
Like a lot of others here, my GP misdiagnosed the problem as (stress induced) depression and despite years of tablets I never got any relief from disparate prescriptions or counselling. Shortly before being properly diagnosed I also put on 5 stone in 18 months, despite having no appetite. Regular blood tests did not pick anything up - how extensive are they I wonder? My tumour was discovered almost by accident, when I was sent for a scan due to regular bouts of eye pain. My GP was the first to relay the results to me, and she almost cried when she got them on her computer screen for the 1st time. I almost had to counsel her!!
My best guess is that the alien in my head had been around for 15 or more years before being found and my 1st reaction was one of relief that there was a logical explanation for why I felt like I did. 3 years down the line and I am getting really fed up again - I feel crap 4 or 5 days out of the week and when my head stops hurting or feeling like its stuffed with cotton wool, I don't have the energy to do anything about it. The only permanent upside of my treatment so far is that the drugs (Cabergoline and Quinagolide) might as well have been Viagara (my new partner can also reap the benefits of this tranformation)!
Just had a confirmation that my next MRI will be next monday (24th) and endo will be seeing me approx a fortnight later. Lets see what they come up with this time!

[bazhaney]

robjmann.
when i was diagnosed they told me it was breast cancer for first 6 mths ! ! ! going in and out of breast clinic not nice ,only one doc,said no,sweating and headaches sound like pituitary tumour ,sent me for MRI ,and BANG. WAS LIKE YOU HAPPY,cos i knew weight gain was not due to my over eating..then my endo team told me for next 12 mths its a malignant neaoplasm of the pituitary gland ......and the rest is history,like i said bloods tommorrow,then back to GP then im changing from walton to royal hospital cos fed up (and my GP is aswell) of getting fobbed off by uncaring Dr's..

[jimmie-m]

Hey Guys,

Really good to hear of people on the same medication. I also seem to have had the tumour since for 20 years without knowing it existed and was diagnosed 2 and half years ago. Fortunately I don't have any pain with it and was only diagnosed as I went to give blood and my iron levels dropped through the tube! My prolactin levels were found to be 115000. I started on Cabergoline but couldn't get on so well, severe headaches. So I started on Quinagolide 75mcg's the MRI revealed macroprolactinoma of 32x21x14mm. The levels started coming down over a year and got down to 232. As my testosterone levels were still nill I started testosterone replacement therapy(pump form of Gel) and started Levythyroxine 150mcg as my thyroid was underactive. My prolactin levels started to rise, they got upto 3170 over 9 months. So currently on 600mcg /day and level was at 721. Have just had an MRI scan and are waiting for the results. We have also just found that my sperm hasn't any spermatozoa and are due to see the specialist in the middle of this month. We are both severely gutted as are sure that this means that we can't have children at all. I had been referred for surgery but they felt that it wasn't worth it as they couldn't get it all out and as it was near my optic nerve. The only risk is apoplexy (haemorrhaging). Weight gain has continued to rise but think this is more to do with comfort eating than directly medication but was hoping the weight would fall of with thyroxine.

A few questions;
Is anyone else that worried about the risk of the tumour haemorrhaging
Has anyone had the same situation as me as regards to zero sperm count and any good news?
I have heard that testoterone replacement can suppress sperm?

Really pleased to have found this site and is great to read other peoples situations. Great to get it all down and clear in my head...sorry if it is a bit of a dialogue!

All the best
Jim

[robjmann]

Welcome Jimmy,
I read your post with interest as you seem to have more than just a prolactinoma issue.
Some of your symptoms sound more like a post-op patient suffering hypopituitarism but it looks like your medications are relatively standard for each individual complaint from what I can see from others on this site.
Sorry to here about your lack of healthy swimmers! A very pertinent point has been raised by Plum this week - see Acromegaly (Psychological support) regarding more involvement from the counselling side of NHS. Perhaps a referral from your consultant might help?
As far as your question on haemorraging is concerned, my tumour seems to be in a permanent state of haemorrage, but my Endocrinologist does not seem too concerned (and neither does the Neurosurgeon he refers to occasionally) as long as any growth does not affect my optical nerve. Apparently the bleeding is just a side effect of the actual tumour!
My advice, for what its worth, would be to have a good look around all the threads on this forum, as useful information can be gained from the sufferers themselves. This can arm you with questions for your own medical team. Also very useful is the pituitary nurse on this site - she can answer a lot of technical issues, as well as providing advice on what you should expect from the medicos.
Good luck and see you soon on here. Robert

[robjmann]

****QUICK UPDATE****
Saw consultant 2 weeks ago with comparison results of latest MRI's. Tumour has grown slightly and still shows signs of bleeding. Endo referring me direct to Neurosurgeon for his opinion on why headaches and nausia causing major problems.
Blood tests show hormone leves all within accepted limits - although some on low side.
Seems drugs (Quinagolide 150 mg) have these under control but not affecting tumour progression.
Will report back on Neurosurgeon's thoughts!

[jimmie-m]

Hey

Rob - sorry to hear yours has grown and you are in pain. I am so thankful that I don't have many side effects, had a stinking chest infection this week and had very painful headache, fortunately went away with ibroprufen but was panicing something was going on.
My MRI showed that it apparently hasn't grown but my prolactin levels are still up abit at 650 so Endo has upped Quinagolide up to 900mcg.

Doesn't seem right as on the first consultation he said only would go upto 300!

Oh well keep the faith in these people.