pituitary tumor

[Dogbutler]

Hi,

Just wondered if anyone else has a pituitary tumor (aka prolactinoma)?
Mine was diagnosed nearly 10 years ago and since then I've gradually developed other endo disorders such as hypothyroidism and growth hormone deficiency.
T2 diabetes is the latest addition to my collection, and I just wondered if anyone else has had something similar.

Ness x

 

[Totto]

No, sorry, but I have hypothyroidism, possibly due to under-function in the pituitary. Hypothyroidism is bad enough, growth hormone deficiency on top of it stinks. Do you inject for it?

Is surgery a possible solution?

 

[Andy12345]

my daughter has been tested no idea why but she does have autoimmune issues including hypothyroid and db, my mother in law has a pituitary tumor and the wife reckons she has high protilactin levels but not diabetic, she does have this other thing where her skin goes black (shes white) but no idea if thats connected, sorry this is useless the mother in law has had it for many years, she is like 65 now and plays tennis every day and is fit and healthy if thats any consillation

 

[Dogbutler]

I did for just under a year, but it seems I'm one of those people who don't respond to somatrophin. The only thing that happened was lots of bruises!

 

[Andy12345]

oh maybe thats what she meant by her skin going black, sorry only have half the picture

 

[Totto]

I did for just under a year, but it seems I'm one of those people who don't respond to somatrophin. The only thing that happened was lots of bruises!

So obviously you are not on insulin now! Is it possible to treat surgically? I know I wouldn't want them to operate if I could avoid it should I be in your situation. On the other hand we want to feel all right and energetic, don't we? At least I do. Want to, that is!

I am on NDT instead of levothyroixine, a much better drug for me but I have to import it myself.

 

[Dogbutler]

Thanks for the info Totto, NDT sounds interesting - I don't think levothyroxine is particularly good either.
As for surgery, it's an option, but generally if your child bearing years are over, ( at 52 I bloody well hope so!) the treatment is usually oral meds. I have an MRI every so often to check the tumor's growth.
These tumour's are almost always benign, so it's not a big deal. I just wondered if anyone else's endocrine system was failing bit by bit.

 

[Lisbet]

My hubbie has a v large pituitary tumour and has twice had surgery to remove it. It's never caused him ill health until recently, when he started levothyroxine, but he is well. Levothyroxine is a natural substance and should not cause harm - you are just replacing what your thyroid cannot produce itself (I have Graves Disease, as well as T1, so having had my thyroid put to sleep with radiation as it was over active, I also now take levothyroxine. It's no big deal - zero side effects!)

Your neurologist will recommend surgery IF the tumour interferes dangerously with other functions I guess. My hubbie's affected his eyesight so it had to be removed, but it grew again, was removed a second time, then he had radiotherapy to halt further growth. As I said, he remains well and did not find any of this too traumatic. Good luck - and keep taking the medicine!


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[Dogbutler]

Thanks Lisbet,
As you say unless these tumors are large they don't interfere with life (as long as you're not a woman trying to have children).
I just wondered if it was the catalyst for the subsequent endo conditions.
I think that men with these tumors have a much tougher time - because they are asymptomatic, the tumors can get much bigger before detection.
As for the levothyroxine, I don't have any side effects either, but I do have the same symptoms that I had before I started taking it.
That's why I'm dubious about its efficacy.

Ness

 

[xyzzy]

Yup me!

Recently diagnosed in the last six months with an mri to confirm. I now take meds to suppress excessive prolactin levels which are working. Got told my levels were those of a newly breastfeeding mum which totally screwed my testosterone and androgen levels. In males symptoms are constant tiredness with a battle to keep awake anxiety mild depression reduced libido lack of concentration that kind of thing. The endo said it had probably been building up for a number of years and because prolactin stimulates insulin production it may have been the underlying cause of why I became T2.

The endo said in cases like mine I'll need to take the meds for a few years then things tend to correct themselves naturally so in the end you can stop them.

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[xyzzy]

I take a small dose of cabergoline once a week. It is an ergotamine derivative so presumably in large does is hallucinogenic like LSD. The side effects list not only includes hallucinations but also lists gambling addiction and risk taking. So far I haven't lost all my money and not tripping out! You have to be careful if you need to take larger doses as there is a known increased cvd risk.

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[Dogbutler]

Hi Xyzzy,

When I was diagnosed, 10 years ago now, I was initially pretty scared -who wants lumps in their head!
I went to my doc convinced I had a thyroid problem ( I had the same symptoms as you, plus a couple of women only ones) and a few weeks later was told I had a tumor.
Since then it's been the least of my worries, as the other endo conditions have a far bigger impact on my quality of life.
Very interesting that your consultant linked it to T2, mine is very vague about any possibility of a connection.
I hope all goes well and the meds shrink the tumour asap.

Ness x

 

[Dogbutler]

I take a small dose of cabergoline once a week. It is an ergotamine derivative so presumably in large does is hallucinogenic like LSD. The side effects list not only includes hallucinations but also lists gambling addiction and risk taking. So far I haven't lost all my money and not tripping out! You have to be careful if you need to take larger doses as there is a known increased cvd risk.

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Glad to hear you've resisted the drug-induced urge to gamble your cash away and that you are not seeing pink elephants (I've never had hallucinations, even at pretty high doses, but my hub despairs of my shopping habits - does ebay count as gambling?).

 

[xyzzy]

The link is through the increased insulin production as this will make you gain weight and then develop insulin resistance that can end up as T2. I could never understand my weight gain as I ate well before diagnosis but now I know.

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[Totto]

For those who suffer from low thyroid hormones and feel Levo isn't doing the job NDT is an option.

http://press.endocrine.org/doi/abs/10.1210/jc.2012-4107
http://www.stopthethyroidmadness.com/

 

[Dogbutler]

The link is through the increased insulin production as this will make you gain weight and then develop insulin resistance that can end up as T2. I could never understand my weight gain as I ate well before diagnosis but now I know.

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Well well, the arguments I've had with my doc about unexplained weight gain!
Until my diabetes went haywire a couple of months ago I've never had much of an appetite, but was much heavier than I should be.
Finally an explanation that makes sense....
Thank you so much Xyzzy, you've..made my day!

Ness x

 

[Totto]

Lack of appetite along with unexplained weight gain is common in un/under-treated hypothyroids as well.

 

[Dogbutler]

Lack of appetite along with unexplained weight gain is common in un/under-treated hypothyroids as well.

Thanks Totto, I've just been to the stop the madness website and it's really interesting.
All the thyroid problems I'm having are mentioned and I'm going to ask my doc about NDT on Wednesday.
You guys on this forum are absolutely brilliant I've learned so much - really can't thank you enough.

Ness x

 

[phoenix]

It may be very difficult to get a doctor to prescribe it so you might well have to source it yourself.
I don't think this statement has been updated since the trial mentioned by Totto.
I know a lot of people claim it works well for them but If you do use it and especially if you self prescribe, take great care.
http://www.btf-thyroid.org/images/stories/pdf/armour_nov_07.pdf
Not all countries allow it at all, including where I live. Since 2006, the importation, preparation and prescribing of substances containing thyroid extract has been banned in France. There was a major case, where admittedly very high doses were used by a Parisian pharmacist in ' weight loss' pills This led to several people hospitalised and and one death. The extracts were banned because the pharmaceutical alternatives were considered as effective for those with hypothyroid.
http://english.prescrire.org/en/Search.aspx

 

[Totto]

In the UK you can get it prescribed on a named patient basis. If you are very lucky, that is. The same in Sweden, but most doctors are woefully ignorant about NDT. As I said earlier, I import them myself as I have no other choice.