Pituitary microadenoma headaches
Posted , 4 users are following.
Hi! It's the first time I write here and I do it because I would like to know the opinion of other people who are in the same situation. I am 22 years old and I am sorry for the long post, I had no one to talk to, because I don't know anyone in this situation.
1 year ago I learned, through a MRI, that I have a 5 mm pituitary microadenoma, which secretes prolactin. I found this out in an unusual way, at the request of my dermatologist who assumed that the acne burst on my face would have a different cause than the usual ones and so it was. Although,I do not have high prolactin levels (slightly increased)or menstrual cycle changes, I was prescribed Dostinex once a week and Eutyrox 5 days a week because the first drug created hyperthyroidism, but not serious. Since then, I have almost daily headaches, more aggressive or not (I have had them before but not this strong) I also had 2 pain attacks, as I call them, in the sense that I had unbearable pain, high pressure on the ears, head and eyes, severe dizziness and nausea, because of which I was urgent in the hospital. I was also diagnosed with a degenerative disease on the C5-C6 disks of the neck, but from what I understood, it does not cause headaches, but rather shoulders and hands, which I do not have. I talked to my endocrinologist (I changed about 2 throughout the year because they didn't answer my questions and didn't care), and he told me that my chances of having headaches related to the microadenoma were low because It's too small. Also, for 3 years my eyesight has weakened significantly (I can no longer see in the distance), I wear glasses for half a year (I know, I waited a long time until I go to check), but he says that this is not a symptom either. At the pre-MRI check, I was asked if and for how long I had headaches (3-4 years, but I thought everyone has), if I had dizziness, stress (to which I answered yes), but after my diagnosis it is said that the symptoms are not related. Headaches only go with ibuprofen-based medicines.
So I would really appreciate it if you shared your experience and if you would tell me tips or opinions about what I have told here. Thank you in advance!
0 likes, 12 replies
Roddy999 Xuandrra
Posted
I can't really help you in general except on one thing: your eyesight. You may have read about people with macroadenomas having eyesight problems. But their (and my) problem is with peripheral vision, not getting short-sighted. And it can't be corrected with lenses (eyeglasses) because the problem is the optic nerves being squashed by the adenoma. Your endo is telling you the truth.
I guess it only helps you with one less thing to worry about.
This is a long shot but have you had your Cortisol level checked? Because cortisol is your body's natural anti-inflamatory, it does the same thing as Ibuprufen and other NSAIDs (=non steroidal anti-inflamatory drugs). I would be amazed if you have not but silly not to ask. It is a simple blood test, double-checked with a Synacthen Test if there is any cause for concern.
Xuandrra Roddy999
Posted
Thank you for the reply. Yes I did this analysis and it is within normal limits. I have read on other forums and through medical articles that however the headache and associated symptoms are related to any type of pituitary adenoma, which is why I asked here. I don't really trust what my endo tells me because none has been decided exactly on the dosage of drugs, I try several ways and we wait to see what happens and because I feel a big difference between the pains before the diagnosis and the ones now. But, yes, maybe the eyes are not related.
Roddy999 Xuandrra
Posted
I guess what the Endos are telling you is that your headache it is not a hormone issue, which is their speciality. When three different ones tell you the same thing, it is time to accept that this avenue leads nowhere: they are not being unkind or obstructive, the answer is not in their toolbag. So (guessing again!) your next port of call would be a neurologist.
If the pain gets too much for Ibuprofen, there is a stronger NSAID called Diclofenac that you might want to have in reserve. Just keep well clear of opioids (codones) because the 'cure' is worse than the disease.
Xuandrra Roddy999
Posted
Yes, thank you for the guess but I need accurate information. I would trust endocrinologists if they would decide on some things related to my diagnosis. I wouldn't have asked here if I believed what they were saying. I went to the neurologist and I'm ok on that side. And I can't take too strong medicines because I get to emergencies and they don't know what to do either (from experience I say). So the answer is not in their toolbag because they don't know it, but thank you again for your replys.
Roddy999 Xuandrra
Posted
If three different endos - with many years of training and experience of many many cases between them - say something, then I'm afraid that it is time to accept their word for it. You are not being honest with yourself when you say that you don't believe them. Who else can you believe? Some snake-oil salesman sorry complementary therapist who will give you some nonsense mumbo jumbo but hey, it's an answer? I would much rather have a consultant who has the self-confidence to tell me that they don't have all the answers to all of the questions, all of the time.
My best wishes that you manage to find the solution.
katienellie Xuandrra
Edited
Hi! If I can be of any help...i was told the same thing over and over again about my headaches. They kept getting worse and worse to the point that i couldnt run, couldnt bend over and stand up well. I was even getting neuropathy in my hands. I finally switched endocrinologists and found one that would refer me to a neuro surgeon at Mass General, Dr Swearingen. At first, he said the same thing, "we cant say your headaches are caused by your adenoma." He wasn't even sure it was, he thought it could be a cyst. BUT because i wasnt responding to treatment and given my symptoms, he said he would do the surgery. For the first 30 days after I felt awesome, like my old self again! Then slowly my symptoms returned. At my 6 month check up my adenoma was already half the size it was when I had surgery. Doctor didnt seem overly concerned. Then about 3-4 months after that my headaches returned like before and MRI showed it was bigger than when I had surgery. After my surgery my headaches were different and pain meds that worked before dont work now. Also, it comes on now so quickly that i dont have any precursors like I did before. Long story short, find a doctor who listens to you. Even though my dr was skeptical at first but now he knows and doesnt even question me when I tell him how I feel. I cant say enough about Mass General and their endocrinology department and Dr Swearingen. The best of the best. Dont let any doctor tell you that your adenoma are not the cause of your headaches. Yes, im sure they see many patients with small adenomas that dont typically cause havoc but some do!! Good luck with everything!
Xuandrra katienellie
Posted
Thank you for the answer and for the advice. I'm sorry about what happened to you. The first doctor who discovered the microadenoma didn't even tell me directly, I found out through his medical assistant, and then I searched on Google what exactly the disease means. They took me out of the hospital very quickly, without having time to ask anything. Then the other two endocrinologists I have been dealing with are all treating me superficial and whatever I would ask, if it is caused by the disease or maybe by the drug, they say "no, by no means". One of them told me that the drug has no adverse effects, but there are many restrictions and side effects on the package leaflet. They told me that not having a cancerous tumour and because it's small, I will do MRI checks every 12 months and I will never have problems because of it, but I have been feeling a lot of changes in the last year. So I'm glad I'm not crazy and there are people in the same situation. I have one question, can you please tell me what size the adenoma was at the beginning and at the last MRI?
Thank you again!
Xuandrra
Posted
And if it secretes any hormone?
melissa96474 Xuandrra
Posted
hello,
i am wondering what mental symptoms you all had before diagnosis and during both medicines cabergoline and bromocriptine. i have a Prolactinoma 6 mm. pituitary secretes both progestin and growth hormone. i have had both medicines Cabergoline first crying all the time lump in throat and GERD. i discovered on this site low estrogen causes some of that. i am menopausal so increased estrogen throat and GERD symptoms went away. i wanted to go back and try weekly Cabergoline, but Endo says to wait and stay on Bromocriptine. Mentally i have felt worse. i was on Cabergoline since Jan 1, then changed to Bromocriptine middle March. So 4 months combiation both. Anybody have the coping issues? How long mental issues might last and if they had to use a mood stabilizor medicine.. A major side note I have Cushing's with adrenal removed so low cortisol now and steroids for over a year and hypothyroid. Hormonally a mess. Any advice.
Roddy999 melissa96474
Posted
Melissa, I realise that this won't help you much but maybe it will remove one source of worry?
I guess you had Cushing's because your adrenal gland had a tumour? So with the adrenal gone, you don't have Cushing's any more, but you (potentially) have its opposite: Addison's (because now, instead of having too much cortisol, you have little or none).
So the first thing you need to know is that Cortisol and Thyroxin are natural steroids, as are many of the natural hormones in your body. Steroids are not of themselves the source of all evil. You know already that steroid overdoses (hyper-, whether caused naturally or by drug abuse) are bad news. But equally I guess that you realise that underdoses (hypo-) are bad news too. Yes, Hydrocortisone and Levothyroxine are steroids but both are copies of the natural steroid hormones that a healthy endocrine system produces on demand all day every day. The reason that tehy have been prescribed is to replace the hormones that healthy adrenal and thyroid* glands would have made but yours can't. So you really do need to take this medication.
melissa96474 Roddy999
Posted
You are correct I went from Cushing's to Addison Syndrome now. I have had only one adrenal insufficient crisis that I was able to manage at home with tripled steroids. My other adrenal fortunately is responding, but slowly of course. That's great you are familiar with the terms. Typically, most people don't know what they are or what they mean, since its quite rare or poorly diagnosed. Yes and I am very grateful that I have the steroids to take. Before my body was naturally attacking me with them now they are a medical necessity. Also I am also hypothyroid and I do take medicine for that. So I take Synthroid, Hydrocortisone 2x a day, and Estrogen, Progesterone, and currently Bromocriptine. I have been on steroids for over a year now and we taper when tolerable for me. The Pituitary tumor so called Prolactinoma was discovered this year starting the new medicine Cabergoline then Bromocriptine since I started developing stomach problems. Also increased growth hormone levels. Increasing estrogen took all that away while on both those meds. I have been dealing with the emotional ups and downs ever since day 1 of course everything fluctuates causing symptoms, but recently coping skills are difficult again. I cannot seem to get through one ordeal before another pops up so distinguishing what symptoms cause what are probably overlapping. Reminds me of a teeter totter. Is that still a term.
On this forum I was wondering if anyone had mental symptoms (anxiety, depression, crying, hopelessness, easily angered, extra sensitive) before diagnosed with the Prolactinoma and after diagnosed adjusting to Cabergoline and Bromocriptine. Most people talk more about sex drive and getting pregnant before, and nausea/dizziness on meds. I am trying to rule out my other conditions since I know I can have those issues with Cushing's/Addisons/thyroid/menopausal also. Things got worse again after starting pituitary meds, but could be still tapering and the steroids and I have to hang in there. Probably have PTSD now too its common with it, which I might have to address also. God bless.
Roddy999 Xuandrra
Posted
I guess I was trying to teach grandmother to suck eggs, sorry. There have been a few people on here in a panic because they are "on steroids, which is a BAD thing, OBVIOUSLY". Clearly you already knew that is half-digested tabloid nonsense.
Yes, you do seem to have had the book thrown at you! I do hope that your endo can gradually refine the dosages. In hindsight (though it didn't seem like it at times), I've been lucky. I had a non-functioning macroadenoma nearly the size of an eyball. I had no peculiar symptoms, just a slow and steady decline, just kept going on will-power and not making a fuss. By the time I finally got diagnosed, I was dead man walking. My pituitary had more or less given up, so I was hypo everything.
The HRT ( 😉 ) is working very well for me. I am very aware that I have been one of the lucky ones.