What is wrong with me

What is wrong with me

Hi everyone so for the past 5 months I have been suffering with weight gain, tiredness, mind fog ,rubbish memory , my periods are irregular, my breasts are sore and leaking and many more. 4 months ago I had nigh prolactin levels which were treated with tables that has brought the level down but my boobs are still painful and leaking. I've had thyroid test done which are normal. See pic for results.

I just don't know what to do now I'm sick of feeling like this

Has anyone experienced this before?

Thank you

19 Replies

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  • Hi Emma

    I would go back to your medical professional, if your boobs are still leaking then i think they havent cured the high prolactin problem.

  • Thank you for your reply I have had blood tests and the levels are normal so they say it's something else but don't know what

  • Is that the prolactin levels which they are saying are normal since you have been treated?

  • Sorry yes my prolactin levels are 128.6 from the range of (66-490)ulU/ml

  • Hi Emma

    The link below might be helpful. It suggests ruling out other potential problems such as polystic ovaries, cushings disease, acromegaly. Are your periods normal? Are you under an endocrinologist to look further into this?

    patient.info/doctor/galacto...

  • Thank you my periods are very irregular so far this month I have had 3 periods that last 2-3 days

  • Have you had your sex hormones investigated, Oestrogen, Progesterone, Testosterone?

  • No I haven't. To be honest the doctor here(albania )have just kept saying it's my hormones and left it at that. I've been the one pushing for tests but I have no idea what to look for

  • I had the breast problem as a result of Cymbalta, are you on any other meds? I know how awful it is...

  • No medication except paracetamol for the headache

  • If breasts are still leaking theres big problems with the pituarity and they may well be impllcated in low freet3 too you need expert help

    If you also have a headache clearly something more is wrong along with too many periods etc ...they cant just says its hormones there has to be reasons

  • Thank you for your reply. I have been saying that they need to dig deeper but it's a case of them saying just give it another month to see if it sorts itself out😩 we're trying to find a doctor here who might know what they are on about but that seems a challenge in itself

  • Im really sorry you are suffering and struggling to find answers. Very frustrating for you. I think others have suggested prolactinoma on here and that could be something to be investigated but easier said than done getting people to investigate further. I wish you good luck Emma. I had high prolactin levels but no milk discharge but this can be the case with hypothyroidism which you have just been tested for.

  • Was not sure if this will be helpful as I don't have much of a solution but have had your symptoms. I started having high prolactin levels at about 14. My breast leaked and I got mastitis several times. I was sent to a endocrinologist and the first thing they did after blood tests was an MRI of my brain to rule out a pituitary gland tumour called A prolactinoma. I believe headaches are another symptom. I was given the impression they were usually small and benign. I didn't have one and was diagnosed with PCOS and then by another doctor with leaky duct syndrome ( which sounds like a load of crap to me) My breasts have continued to leak a lovely greeny brown sticky substance for years but after I finished puberty it was only on and off . I know when my level raise as I leak more. It improved on its own no idea why about 8 yrs ago and periods became more regular. Over the years I gave up trying to get the doctors to sort it and just put up with it. Every now and then I get a blood test and mostly my prolactin levels are normal but breast still leak. I use hot flannels for breast soreness and check regularly for lumps as ducts can get blocked. If the breast soreness increases and you have heat and redness you may have mastitis and antibiotics help.

  • Thank you this is really helpful I don't no how you have put up with it for so long. Just 5 months and I feel like I'm on deaths door half the time

  • I too think that a prolactoma could well be the cause

    Suggest you do a google scholar search on prolactoma and contact some of the writers and ask them who in or around Albania coukd assist you

    It may be you will need to get help outside of Albania if the country has changed little from when i visted 2 yrs ago

  • Thank you I will have a look

  • I'm so sorry to hear that. I hope you get better soon. Sounds like your hormones levels are significantly more out of whack than mine have ever been. Wishing you all the best . I was just hoping that having run the mill of testing over the years some of the stuff I was tested for may be of help for you to consider. I have also been reading up on the correlations between hypothyroidism and high prolactin levels, galactorrhea and infertility and I am wondering why after years of complaining about symptoms I have only now started treatment for my thyroid because I am doing IVF. Suppose we need to get good at jumping up and down until doctors get the idea.

  • Yes I think I need to just tell the doctor I'm not leaving until I have answers and here they will hate that as they get paid by the people they see

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