I wondered if anyone can help me, being as I have seen countless doctors who don't seem to have answers for me. I've seen 2 gynaecologists, a family planning doctor, and even got tested for all sexual diseases just to rule things out!
I have been suffering with vaginal dryness, low libido, very light one day periods, frequent urination and facial twitching/eye twitching for the past 2 and half years. This problem is ruining my life as I can't start a relationship with anyone because of my vaginal dryness and no libido whatsoever! I am only 32 and feel as though this is going to prevent me starting a family! :-(
I've been tested for kidney function, liver function, thyroid function, PCOS, and loads of other things, which have all come back normal except for my prolactin level. The first time I had these symptoms, my prolactin came up in the normal range and was 315 mU/L (Range is less than 496). The next time I had it tested a year later, it was 543 mU/L, which was slightly elevated. Then 1 month after that, it was 651, and 2 months after that is was 643. At this point I was referred to an endocrinologist who tested my thyroid and Free T4 levels, which were normal. He put me on Cabergoline for a month to 'see if it helped', but I didn't really notice a difference apart from that the sharp pains in my breasts disappeared. He tested my prolactin 2 months after I came off the Cabergoline and it had come down to 351 within the normal range, so he decided to discharge me, even though it was obvious my prolactin had only come down because of the cabergoline!
After this, I got my GP to refer me to another specialist whom I paid to see, and he said he didn't think my problem was due to a tumour and he would only do an MRI scan if my prolactin came up high once more. I got it tested, and it came up just about in the normal range at 494!! So now I am umming and ahhing about whether to go back and see him and have to pay £200 just to be told he won't give me an MRI, even though the level has risen again.
Can anyone help with this please? Or am I just a medical phenomenon?!
I know that the problem is not psychological. I am generally a happy, easygoing and healthy person with no other health issues and no stress. My blood pressure is always spot on, I am normal weight (BMI 21ish) and take plenty of exercise, and I eat fairly healthily.
I had my oestrogen, LH, FSH, testosterone levels tested, and were told these were all normal, (although I wasn't told to have them done at a specific time in my cycle). I worked back through my cycle and from what I can gather, it looks as though my oestradiol, LH and FSH were below the range when I was supposed to be in my ovulatory peak level. FSH- 3 U/L, LH- 8 U/L and oestradiol- 329 pmol/L.
I am sick of trying to diagnose my own problem now and it is driving me crazy as I am not getting any better!
I hope that someone might be able to shed some light on this PLEASE.
First off, I believe that you are getting the royal run-a-round.
Having elevated prolactin levels will affect your sex drive and your sex hormones. What your doctors should be trying to do, is to figure out why you have elevated prolactin levels and low female hormones. Even your thyroid is a possible culprit IMHO .Lab tests, your symptoms/history and getting an MRI of your pituitary gland are the normal starting points of the diagnostic process.
It's good that you know that you are not being treated properly. Now you can dust yourself off, and work on getting a referral to a proper neuroendocrinologist.
It is good that you do respond to the cabergoline, as that medication is often the first line in treating a prolactinoma. But this med should not just be thrown at you without figuring out why your hormones are off. If I were you, I would stop the medication because it will interfere with testing that will occur once you do reach the right doctors.
There is a wonderful charity in Bristol England called the Pituitary Foundation. They know the ins and outs of the NHS and can best advise you about how to get a referral to a proper neuroendocrinologist.They know where the docs are, have wonderful info and even have a support group.
I suggest that you look them up and give them a call to get things rolling again.
thanks so much for your response, I'm glad I joined this site now :-)
Yes, the doctors should be trying to figure it out, but even the 2 endocrinologists I've seen don't seem to have a clue why this is happening, and I get the feeling that they just think it's stress. The first one said he didn't think high prolactin would cause my symptoms and wanted to know why another doctor I saw was focusing on the prolactin as being the culprit!
The second endo I saw said he didn't think it was a tumour and doesn't really want to do an MRI. But from what I have read, it doesn't necessarily mean that I have got a tumour and could just be inflammation or whatever.
I read that high prolactin usually occurs with hypothyroidism, but my symptoms are more linked to hyperthyroidism, so I'm not sure it's that! My thyroid results are normal but they lean more towards hyperthyroidism at TSH 1.22. Even though, my mom had thyroid symptoms for years, and eventually developed a goitre. But I don't want to be waiting for 20 years before something is done about this!
Do you know whether a thyroid problem can be detected by an MRI of the pituitary, even if thyroid blood tests are normal?
I will definitely look up the Pituitary Foundation and get the ball rolling again. I was starting to give up until I read your reply. Thank you so much!
A thyroid problem cannot be detected with a pituitary MRI - it has to be done with thyroid testing (and a thyroid ultrasound). Did anyone do thyroid antibodies and an ultrasound?
A pituitary MRI also should be done properly - as in dynamic (which is a technique, not a machine) to give a person the best chance to have one show up. That means the tech giving it should be experienced and the place has to have the equipment to give the contrast without pulling you out of the machine as recording the uptake of the contrast can show smaller lesions.
I had a prolactinoma with barely abnormal levels - so it can happen. Mine bounced around. You do need a good endo - a neuro-endo to make this all happen. Elevated prolactin can happen for any number of reasons - so they really do have to look for a cause - but giving up on it when you have symptoms is not an option.
No, I haven't had a thyroid ultrasound or been given the option to have one. My doctor said the other day that I can have thyroid blood tests done once a year to check what it's doing, as my mom has got thyroid dysfunction. I've had free T3 and free T4 done and both are very normal.
I will definitely keep a note of making sure I get a dynamic MRI done by an experienced technician, thanks for that.
When you say it 'bounced around', do you mean your prolactin level? Sometimes I feel terrible- fuzzy headed, palpitations, nervous tics, and as though I've got flu coming on, and this is when I feel as though my prolactin is sky high. Then the next day I might feel great. It's really weird. I was thinking maybe what if it is just a hormonal imbalance? But would it last nearly 3 years!!
I did see an endo who specialises in pituitary disease, but he wasn't a specific neuro-endo, and he didn't seem all that keen on doing the MRI, but I think it was because I told him I'd already seen another endo who discharged me, who I think he had a lot of respect for.
I definitely won't give up now. I just need to find the right doctor who is sympathetic and believes me when I say this problem is ruining my life, and will do all s/he can to help me.
Thanks so much for the valuable advice, I'm feeling more optimistic now.
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