6 years on treatment and still feeling like crap ?

[fendertele]

Hey im hoping someone may be able to help me as i am getting nowhere with my Doctor.

I was diagnosed with a Prolactinoma in 2007, my symptoms at the time were as follows.

- Massive Weight Gain
- Gyno in left nipple
- tired/weak/emotional/mentally unstable
- erectile dysfunction despite a good libido.
- dermatitis/dry skin
- hair loss
- eye brows thinning
- big face and big belly


I have been taking hydrocortisone daily since then and cabergoline twice a week.

I have grown tired of Doctors as i see my specialist every 6 months, he runs xrays and blood tests... then when we sit down he tells me all my levels are good or on one or two occasions that my thyroid tsh level is high but it is back to normal the next blood test.

So if all my levels are great and the tumor has shrunk why am i still feeling just as bad if not worse than before treatment ?

list of symptoms today

- Weight gain/Can't lose fat ( despite jogging daily and a healthy balanced diet)
- Hair thinning/Not growing properly ( if i were to pull a clump of hairs out, they would never grow back)
- eyebrows thinning/regrowing/thinning endless cycle.
- moon face and big belly.
- asthma worsened
- acid reflux everyday... burning liquid coming from stomach up throat ( taking antacids dailly to keep at bay)
- weaker and more fatigued than ever
- wounds and bruises don't heal
- poor poor erections (  made worse by any cardiovascular workouts, if i stop jogging they improve? but get fattter)

So as you can see for all the treatment and levels being good i am no better than day 1.... what could be up ?

Some of the symptoms are strange for example.

My hair doesnt grow back if pulled or scratched out only once... as i plucked a few from scalp with head trimmer by accident and it has never regrown yet other people pluck and pull for a lifetime and it always grows back.

The weak/non existent erections and how they are made worse by any form of cardio excercise ?

anyone in the same boat or can shed some light would be most thankful, i have my ideas that the steroid use is the culprit add to the fact i also use inhalers containing steroids.

[rumpled]

I would get your doc to wean you off. Weaning is no fun... it can be downright painful. Sometimes with Cushing's cortisol can vary up and down and the aches you can get be caused by it.

Oddly, if you test when you feel wonderful with no pain, your test results should be higher. Cortisol takes away that pain. It is the lowering that hurts - but it is hard to catch it as the lowering and the pain don't coincide perfectly.

I have a pin-head - in that I have a tiny head. So when I go Cushing's I actually looked a bit more normal LOL... they kept looking for the moon face but there was no way - but looking at pics you can see huge changes. Only before my last surgery you can see how swollen I am. When I lost weight, I lost it in my face and back - I still have my belly. Not super happy with it.

[fendertele]

this was an old post i made with another account on here years ago i had forgotten all about.

http://www.medhelp.org/posts/Neurology/Prolactinoma--Treatment-and-not-getting-any-better/show/1422215

[fendertele]

hey again thanks for the replies folks, i take 10 mg in the morning and 5 mg at noon. I aint gonna lie and say i know exactly whats going on tests wise as i have just put most of my trust in the doc and endo.

But my lower half of my face is massive! i look like a character from the british tv show Bo-selecta and the same way i knew something was up before dianosis even when they kept telling me i was fine, i know now that something is off.

[rumpled]

Agree with horsey... My doc will treat me for thyroid even when I am in *normal* as he wants me in a particular part of the range - as in the higher parts of FT3 and FT4.

TSH is pretty useless if you have pit issue.

It also requires that you have to test at the right time of day, fasting, and consistently as well. I know in my case, it was lab error and then doc interpretation that held me back for years.

[horselip]

If you can get an appt sooner esp about the need for hydrocortisone. What dose are you taking?

Have you had the stimulation test to check your Growth Hormone levels? Since that's the first hormone to go it might be worth asking about if it has not been addressed. In the IK they use a quality of life questionaire

Also the Ref range for thyroid hormones TSH, Free T4, Free T3 are quite broad. I have symptoms of low thyroid when my levels are on the low end of the reference range. (eyebrows and hair thinning, constipation, difficulty concentratioing, fatigue etc) So TSH alone is not a good test for anyone with a potential pituitary issue. The docs need to check your actual Thyroid levels too.

And then the low testosterone...it's quite a can of worms and you need a neuro-endo's help.

Hang in there, it can get straightened out.
Horselip

[fendertele]

I have an appointment in june and i plan not to hold back on how unhappy i am as i always seem to hold back... must be a guy thing. I will ask for all results and such on paper.

It sounds bad but i really was hoping something was off! so i could have something to fix hoping things would improve, its worse to be told everything is fine when you know deep down nothing is fine.

[fendertele]

I had been going back and forth to the doctors for years as i felt something wasn't right with my body.... i had gained so much weight i went from a size 32 to a 40 with no change in my diet and a working out.

I also noticed hairloss, eyebrowloss, dry skin with flaking possibly seb dermatitis, and i was very emotional fighting,crying you name it went through the full range and of course the Erectile issues and gyno.

I finally got a finally got a new gp who sent me for scans and they found a tumor ? and decided to give me hydrocortisone and cabergoline to treat it.

They had mention when i first started that my testosterone was low and some other things were low, and that the hydrocortisone would eventually level these things out ?

I did the synacthen test, blood tests and xrays every 6 months and was told i was fine and my levels were back to normal and the tumor was shrinking.... yet the symptoms just seem to continue to mount up.

My newest one is this Acid reflux that came out of nowhere, i swear my body it attacking itself.

[rumpled]

No offense - but why were you put on hydrocortisone? Your symptoms are more in keeping with elevated cortisol that low... so adding more is like adding gas to a fire?

It may be steroid-induced Cushing's (from your inhalers) or the inhalers could have triggered a latent issue in you, and you don't have a prolactinoma, you really have Cushing's. For instance, I was diagnosed as prolactinoma, then "incidentaloma", and then Cushing's - my pathology showed I had both tumors.

Do you or can you get copies of your tests? I would see your levels and actual results. Lab error and doc error can really hold you back.

[fendertele]

Thank you so much for your reply.... i feel like i am " nicely " putting across my unhappiness to both my GP and my specialist Endo and getting fogged off... it is quite apperent just to look at me that i am not alright, anyone who knew me before treatment can see i have changed.

I have went from being a tall slim, full head of hair and thick eyebrows and having lots of energy that was full of life into a big shrek looking character with patchy hairloss and thinning eyebrows.

I am massive! i look like i do body building or something people ask me how much i lift.... and all i do is jog.

This is what treatment has given me, add to this really poor erections/non existent and all those other things i wrote.

I basically get a scan,blood tests and a synathcan * < spelling test.

And im always told my levels are good,fine etc.......

But now and then they tell me that something that is needed to create thyroid is working overtime and so they test me again then it appears in normal levels the next time..... so nothing is ever given to me for it.

[pdan]

Wow, there are lot of symptoms there. You must have realised that your pre-diagnosis symptoms are all things that are typical of hormonal dysregulation. Eyebrows thinning and outer edge hair loss is typical of thyroid dysfunction. The gyno can be the result of too much testosterone converting to estrogen or too little testosterone in the first place.

"Levels are good" can mean anything. More than 10 years ago, I was told my testosterone level was "normal", but I discovered it was typical of a 90 year old with chronic illness. When people say normal, they mean it is within what is called a reference range. However, a reference range can be useless unless it is a range related to your actual age. There are tables that show what may be typical of a certain hormone for a man of your age. And each lab has a different reference range, depending upon what equipment is used for measurement and what population they have tested to get these ranges. For example, one hospital may say its testosterone reference range is 9 - 40 nmol/l, while another may have a range of 12 - 35. Labs also make mistakes.

When you mention "specialist", what is this doctor a specialist in? Is it an neuro-endocrinologist? One suggestion is to write a nice courteous letter to hi/her, thanking for seeing you on xxx date and request that you be sent copies of all your blood test results for your own files along with the relevant reference ranges.

Then, post your results on this site as there are many who can help you with interpretation, especially a gal called "rumpled" who is the resident patient expert on this site.

Moon face is a typical side effect of hydrocortison dosage. So is slow healing and bruising.

Energy, weakness and fatigue can be a result of poor cortisol levels, or poor testosteerone and human growth hormone levels.

Poor erections can be a a symptom of low testosterone or poor circulation, nitric oxide dysregulation or nerve damage.

Pituitary tumours come in all types. You can get some that both overexpress some hormones and underexpress others.

Have you had tests for growth hormone and cortisol that involve taking blood every 30 mins over 4 hours? These would be called the insulin or glucagon tests. These are the gold-standard tests for deficiencies in these two hormones.

Also, it would be very interesting to find out what time of day they conducted the testosterone blood tests as these have to be conducted before about 10-30am, and two tests are required to diagnose hypogonadism. You see testosterone levels are at their highest in the morning in normal people and then taper off over 24 hours.

I had a nonsecreting macroadenoma. I expressed the wish - in writing - that I have hormone deficiencies replaced immediately they were discovered. Thus, I was on growth hormone and testosterone quite quickly and before the surgery to partially remove the tumour.

More and more endocrinologists are finally realising that what they have called "satisfactory hormone replacement" is not satisfactory at all to the patient. This is because, tablets and injections cannnot mimic the body's natural release of hormones. This six months check up caper is also very suspect, because what happens during that six months when your hormones start to either secrete too much or too little?

I am really surprised with your symptoms that you are not on one of the daily applied testosterone gels, which are rubbed on the upper body. Also surprised that you are not one growth hormone as the USA Endocrine Society has stated in one of its position papers that this is generally the first hormone to fail.

'Hope this helps.

I'm in the UK, where there is an excellent online charity called the Pituitary Foundation which has lots of material which you can download. The endocrine nurse for the site is also excellent.