UK Macro - Prolactinoma - slow treatment

[stewd]

I am a 43 year old male living in Scotland in the UK.
In November 2013 I was diagnosed with a pituitary tumour and was told it was about 3cm in size.

The lead up to this diagnosis is as follows... Since March 2013 I had been commuting to work daily by bicycle, cycling about 18 miles a day to get to and from work. I was also cycling all day at work as a community policing officer. In my opinion I was fit and healthy and had lost weight due to this constant exercise....

From about September / October 2013 I started to feel dizzy and light-headed especially when standing from sitting or getting out of bed. I also slowly began to feel increasingly fatigued and even after a couple of restful days off between shifts felt no better, i slowly appeared to be losing fitness...I could quantify this as I timed my journeys to and from work and was gradually getting slower and slower.

One morning when getting out of bed I fainted, collapsing on the floor and then thought it was about time to see my doctor. She arranged blood tests, which came back with several abnormal results. She had more tests taken to make sure there wasn't a mistake...there wasn't...

My bloods showed I had high Prolactin, low thyroid and low testosterone levels.
I was referred to an endocrinologist and he carried out more tests and an MRI.
I have been taking Levothyroxine since.

The MRI showed a 3cm tumour touching my optic nerve.
My symptoms are

almost constant headache, centrally located directly behind my right eye,
slightly blurred vision in my right eye and occasional blurring to the edge of my right eyes vision similar to a heat haze effect.
fatigue
aching joints, elbows, knees, ankles and lower back
occasional pins and needles in my feet and hands
always feeling cold

The NHS is a bit slow it seems and I am still waiting to see an ophthalmologist for a vision field assessment and a neurosurgeon...both these appointments are next week.

I saw an endocrinologist 2 weeks ago and had further blood samples taken and tested...
I have not had any other medication and none has even been suggested or mentioned.

Is this common experience ? Would medication at an early stage not be beneficial ??
Should I be asking anything in particular of the ophthalmologist and neurosurgeon when I see them ?

Thanks in advance..... :-)

[horselip]

I forgot to post that I also was wishing you a successful and complication-free surgery!
Please rest and let us know how it goes later on. If you end up with Diabetes Insipidus I'm your gal :)
Horselip

[Loo44]

Thinking of you today.  Hope all goes well xx

[rumpled]

I hope surgery went well! Glad they took you so soon.

[fendertele]

At first i hated the long waits between appointments then i actually began to hope they were longer as i always left feeling worse than when i went in at the lack of help they were outside of giving me drugs.

[stewd]

I saw the ophthalmologist last Monday and the surgeon on Thursday...Was told that surgery is required and would probably be in April due to the surgeons workload.....gutted at having to wait so long.....
Took a phone call from the surgeons secretary at lunchtime on Friday, the day after seeing the surgeon to be told that I'm going in on Thursday and surgery will be Friday. I'll report back.

[stewd]

Thanks for the replies
I don't know any of my readings sadly....they don't seem to pass them on over here... I will ask next week. I'm hoping come this time next week I will be both better informed and getting something done to fix me....

[horselip]

Hi there-
I was told that I had a prolactinoma because my levels were ~200 ref range (5-30?). Ends up that I had a Rathke's Cleft cyst that was pushing on things and that caused my prolactin to go up. My surgeon was very surprised when he was removing the Cyst as it did not match up with what he was expecting.

Also for a person of average weight I've heard that ~100 mcg is the average replacement dose for people who do not have nodules or issues converting T4 into T3.

Like Rumpled I am on a higher dose of Levothyroxine at 150 mcg and Cytomel (T3) 10 mcg/day now.

Also prior to my surgery my Growth hormone levels tanked and I was given a stimulation test right away based on a low IGF-1. I did not pass the test and started the GH right away, I was a much slower thinking, apathic, fatigued and lacked interest in almost everything that I formerly did. Now, eight years later I can tell when I am slacking on taking this med when I get that way.

The UK Pituitary foundation used to have a nurse that you could call for advice specific to working with the NHS. They know the surgeons and endos working in this field.You might try phoning.

I am in the US but was active in that group earlier in my saga. Reading former posts in their forum might be of use too.

Horselip

[rumpled]

It may or may not be... without seeing your tests it is hard to know. Larger tumors tend to be non-functioning but then hormones are not off and only mass effect symptoms are in play.

But I would guess it is highly likely you do have a prolactinoma.

[stewd]

:-) i have read everything there is to offer....I think that's half the problem...
No-one has actually said the word Prolactinoma to me, but the thing that kicked the whole thing off was an apparent high level of Prolactin in my bloods.....having read all I can find it seems to fit.

Thanks for your kind words

[Loo44]

You are right with UK forum, I find the site very helpful, but it doesn't seem to be as active as this one!  There is a wealth of literature you can download for free, you just need to register - no payment necessary.  No drugs were offered to me prior to op, but my tumour was apparently non secreting so drugs would not have helped.  I'm no expert, but I think if you have a prolactin tumour, drugs can be used to shrink it.  Do you know what type your tumour is?  As you are seeing a surgeon, surgery must be the road to travel - you'd stay under an endo if not.  Will talk about surgery more in the future if you have any concerns, but I'm the biggest coward going - can't even watch casualty or er lol - and I did the surgery like a big grown up girl!  I'm 48 by the way!  Do keep me posted.  Ask any questions you think I may be able to help you with. Hugs, Laura x

[stewd]

In another news.... The UK pituitary foundation appears to be a great resource, but sadly you don't get full access to their forums unless you become a paying member... I don't have an issue with this but the level of participation is very small because of this I think.

[stewd]

Thanks for your update....it's great to read / hear about someone else's experiences in the UK....we're you offered any drugs to reduce the size of the tumour ? We're they even mentioned or offered ?


Compared to your story mine seems to be progressing at lot quicker... But it still feels like a drag. The initial diagnosing Endocrinologist I saw in November, was arranged via my private health insurance and all happened pretty quickly...
He explained that surgery would be required and that I would be referred to NHS by him via my GP.
I have since seen another Endo consultant. As stated above I see an opthomologist and surgeon next week... I can only assume the fact I'm seeing a surgeon suggests that surgery is planned..... Surely I wouldn't be seeing a surgeon otherwise ???

[Loo44]

I've just had transphenoidal surgery performed at Kings College in London for my pit tumour.  It was large, like yours, but non-secreting, so drs thought.  My initial problem was eye sight loss.  It took me 15 months to get diagnosed - finally sat and cried at drs and asked for MRI of brain.  Things did move quite quickly and surgery was booked for October.  However, day before op, was told no beds and surgery cancelled.  I waited until end of January for my op!  Good old nhs, but can honestly say Kings are treating me very well.  Am a little wobbly at mo due to hormones being shot and adrenals giving up and now on steroids!  It's still early days.  Hang in there - go bother your gp again and again.  My eyesight is dramatically improved after surgery and headaches gone.  You may not need surgery - depending on type of tumour - but vast majority are benign - in fact most of them are. Rumpled is a great source of info, but as a fellow Brit, shout me if I can help u further.  Hugs, Laura xx

[stewd]

Ok... Thanks for all the info. It appears that you singlehandedly run this section if these forums ..

[rumpled]

I don't know what your TSH is, but that is, IMHO, a started dose of thyroid. Where you start to adjust. I had my thyroid removed so I take 175 + 15 cytomel (T3) but before that I took 125 T4. I was on 88 for a long time too.

Yes, the medication can reduce the size of the tumor and it does work in most (but not all - roughly 10% don't respond) people. It would reduce your symptoms. It takes time. The time it takes vary and it could be weeks, months or years. If it takes too long though they really should consider surgery sooner rather than later due to the size of your tumor.

I had Cushing's myself - my UK buddies went to St. Barts in London. It is also good to find papers written in medical sites by UK docs and contact them.

[stewd]

Thanks for the reply...
I'm currently in 50 micrograms of Levothyroxine.
To date no-one has hinted at medication....
I take it some of this medication will balance out how I feel in general..?
Weak, tired and almost permanent headache ?

I've checked out the UK pituitary foundation's forum, it doesn't appear to be very active to be honest.... Nothing compared to this and others in the US.

[rumpled]

There is a UK pituitary group - I suggest you look at that website and join up and find some people there to help you navigate NHS.

As for treatments, in general, prolactinomas are treated with medications. Your doctor may try medications to see if your tumor reacts and comes back away from the optic nerve. You will need to be on the medication for the rest of your life.

If the tumor is not a prolactinoma or does not react to the medication, then likely you will need surgery and radiation as parts of your tumor, I would guess, are inoperable.

It would help if you can to get a copy of the MRI report - but I know that is not so easy for you guys - as well as copies of your blood work. It also helps to know that you should try to get testing at 8am fasting, and try to do it consistently. Like my doc asks me to do it off meds (e.g take meds after I do the tests) so he always can see how I am always the same way. Also know that labs can easily botch labs like 24 hour urine tests - letting them sit in warm places (you too must always keep them cold!) and ACTH must be in a chilled tube and spun immediately or it degrades. In other words, doc and lab error can hold things back. It held me back 10 years.

As for questions, I would ask for medication ASAP as there should be no downside to shrinking your tumor and you have to find out if you have a need for other replacements.

The optho I hope can push for fast treatment - as in my layman knowledge, the optic nerve is not forgiving, so if you get too much pressure on it, it is not a good thing.

You also want a surgeon that is skilled in larger tumors. A good outcome is really made by the skills of the surgeon. The second is the anatomy of the tumor and you - cannot be controlled.

How much thyroid did they give you?