HELP! Elevated prolactin and no libido!
Posted , 8 users are following.
Hi,
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.
0 likes, 50 replies
jen87hsu Sheepcoat
Posted
Have you discovered what was causing your symptoms? I'm going through the same exact thing and having no luck identifying the issue or finding a dr to help.
Sheepcoat jen87hsu
Posted
I still haven't had a diagnosis for my symptoms, although have got high prolactin levels and high thyroid antibodies, but I have had a brain scan and my pituitary was normal and mt thyroid blood results are normal. My endocrinologist said she thinks I have a metabolic disorder and is probably going to refer me to a specialist metabolic department at a hospital. Have you had your prolactin and thyroid levels tested? Have you seen an endocrinologist?
jen87hsu Sheepcoat
Posted
jen87hsu Sheepcoat
Posted
jen87hsu
Posted
Sheepcoat jen87hsu
Posted
I've also been everywhere looking for answers and seen tons of specialists. The endocrinologist I'm currently seeing doesn't know what kind of metabolic disorder it could be; it would have to be investigated by this special department for rare diseases and disorders of the metabolic system. I've recently discovered that people can have neuro-metabolic disorders so the next specialist I'm seeing is a neurologist!
But from what you've said it really sounds as though your problem could be thyroid related...being hypo causes you to be deficient in almost all vitamins which then cause the facial twitching etc etc. I used to get facial twitching but started taking magnesium and the twitching has completely vanished. The vitamins have cured some symptoms but not my main ones. A lot of hypo people are low in iron which can cause the fatigue, and are also low in vitamin D which causes the muscle pain. I was low in ferritin (a form of iron), vitamin D, calcium, folate and magnesium. I think being hypo can also cause cysts too! Please have a look on this fantastic thyroid charity forum for people with thyroid disorders, I think they could really help and advise you... let them know what your thyroid results were and they will tell you exactly what's what.
Search for Thyroid UK when you're on HealthUnlocked.
Also, you mentioned parathyroid glands- I think they usually test this with calcium first. I did look into hypoparathyroidism at one stage but it doesn't seem to cause many symptoms and the only way of treating it is to lower or higher the calcium from what I read. But the other possibility is that there might be a tumour or nodules causing problems. Have you ever had a thyroid ultrasound?
Bellaboo1 Sheepcoat
Posted
Sheepcoat Bellaboo1
Posted
I'm very sorry to hear about your symptoms and everything that's happened so far in your life :-( You do sound like you're suffering quite a lot.
I've got the majority of symptoms you've mentioned above and it's also been making me suffer a lot over the past 8 years, and particularly the last 5. I've been trying to find answers for all this time but with no real diagnosis yet, although my symptoms all seem as though they're pointing towards a thyroid problem, especially because I've got thyroid nodules and high antibodies. However, my endo doesn't think my symptoms are thyroid-related. There is a great charity website that I use though where a lot of people have thyroid blood results in the 'normal' ranges and couldn't get treated by doctors, and so they are self-treating. It seems as though doctors aren't as clued-up as they should be where thyroid problems are concerned and lots of people's lives are being ruined because doctors refuse to treat them. People with thyroid issues are often very low in many vitamins/minerals which cause all sorts of symptoms like muscle pain, fatigue, twitching etc. I used to have a twitching eye but started taking magnesium supplements and it has totally disappeared. I also had restless leg syndrome which was a folate deficiency and so folic acid had cured that. You should start taking a good multivitamin which includes iron, vitamin D, vitamin B complex, folic acid, magnesium, calcium and selenium. This should eliminate some of your symptoms. My main ones are still present, but at least I know I'm getting all of my vitamins and I've cured some of the milder ones. Do you have a copy of your thyroid results by any chance? Also, fibromyalgia often comes hand in hand with thyroid disease.
sheryl37154 Bellaboo1
Posted
al70981 Sheepcoat
Posted
I do hope I'm wrong but if you have elevated thyroid antibodies it is almost certain your body is attacking your thyroid gland piece by piece. This is a process which can take years. Testing TSH and FT4 is the mainstream test, however this test is very unreliable, they can turn up normal while your body is slowly destroying your thyroid gland and you are developing more and more symptoms. Its crazy to think FT3 is the hormone which actually circulates in our blood stream and gives us life yet most Dr's don't even bother testing it. FT4 must be converted to FT3 before your body can use any of it.
I just had my prolactin tested and its boarderline high 454 ref (85-500), thats with thyroid medication. It use to be over 1500 without it.
I was diagnosed at 27 with Hasimoto's. I'm 32 now almost 33 and I, like you am suffering with such severe vaginal dryness and vaginal atrophy I couldnt even bend over at one stage. All these years and Im still searching for answers for my complete loss of libido. I also started using Vagifem. its very depressing but has at least given me some relief. My desire to be able to just function normally as a women again is almost all consuming. This hormonal imbalance has truly robbed me of my zest for life. I feel a lot of the time like I am just existing and not living.
Its very comforting to find people who understand. I feel very isolated at times. And when searching the net, only finding post after post about menapoause
People don't understand how devastating this can be, to be so young, not even yet to expeience motherhood. I know its hard but please try and not let it stop you from getting out and dating. Remain proactive. Hopfully vagifem has helped you? I do feel like its putting a bandaid over the cause though. Its not enough for me. But it has at least made it possible to use lubricant as it thickens up the skin and makes it more resilient. Lub (even the most organic types) would feel like straight alcohol before, was torture. I also have the very short periods and my cycle have even shortened to 24 days. I was starting to think maybe its an early menapause so I had my Oestrogen tested. i do think its low at 138 pmol/L. But im not sure. I was tested 2 days after my period. and ranges are
follicular phase <320 preovulatory="" phase="" 450-2000="" luteal="" phase="" 125-1300="" post="" menopausal=""><170
please keep testing your thyroid. freet3 and freet4. even though your antithyroid antibodies alone should be enough for you to be prescribed thyroid med. i have just about given up on doctors, they are clueless with hormones so lease stay around. we can enlighten and support one another until we find answers.
sending you hope and support
ally please="" keep="" testing="" your="" thyroid.="" freet3="" and="" freet4.="" even="" though="" your="" antithyroid="" antibodies="" alone="" should="" be="" enough="" for="" you="" to="" be="" prescribed="" thyroid="" med.="" i="" have="" just="" about="" given="" up="" on="" doctors,="" they="" are="" clueless="" with="" hormones="" so="" lease="" stay="" around.="" we="" can="" enlighten="" and="" support="" one="" another="" until="" we="" find="" answers. ="" sending="" you="" hope="" and="" support="">
please keep testing your thyroid. freet3 and freet4. even though your antithyroid antibodies alone should be enough for you to be prescribed thyroid med. i have just about given up on doctors, they are clueless with hormones so lease stay around. we can enlighten and support one another until we find answers.
sending you hope and support
ally>
Sheepcoat al70981
Posted
thanks for the message- it's always great to hear from people experiencing the same difficulties and that we are not alone.
I go on Thyroid UK forum a lot (on Healthunlocked) and they have also said I have got autoimmune thyroiditis (or Hashimoto's disease) without a doubt. They told me on the forum that my results were all 'euthyroid' and that I would find it difficult to get a GP to treat me. My results aren't even borderline high or low, they appear perfect, yet I've still got these symptoms. My T3 was in the normal range although someone on the forum said it was too low in the range and would cause symptoms. I managed to get a trial of levothyroxine from my GP, but all they did was make me really breathless and nothing else! I also got some T3 from someone off the forum and tried those for a few days but they just made me feel anxious and I had insomnia. I am now wondering if I might be overactive rather than under as I know Hashimoto's swings over and under constantly.
I have just had a trial of cabergoline for the high prolactin but it didn't do anything apart from the sharp pains in my breasts disappeared. It was also making me very breathless and so I was taken off it.
I started having symptoms at around 27, the same as you. I'm now 35 and am no further forward. I haven't been able to have a relationship since 2010 because of the sever lack of libido and dryness. Like you, sometimes I get very down about it and wonder if I'm ever going to get better. I have just got used to the idea of being by myself now, which is sad :-( Do you find the Vagifem helps much? I still haven't bought any but am certainly going to buy some soon. I also think the same as you that it's just putting a bandaid over the cause. I have constant cases of thrush due to the lack of moisture down there, it's a nightmare.
I also feel very isolated because it seems that this dryness doesn't seem to affect a lot of Hashimoto's sufferers from going on the forums, and like you say, they all seem to be menopausal anyway. And yes, it is devastating, and people don't seem to understand when I tell them my problem- they just think it's a lack of libido and not that it's a problem with libido as well as not producing lubrication. Are you in a relationship at all?
What day of your cycle were you tested for oestrogen on? Do you mean 2 days after your period finished? If you let me know I will look on the chart on my own blood results. My oestrogen was tested and was actually quite high, but I guess that's as bad as being too low, but it was still within the normal range.
My GP won't test T3, because the system they use only tests TSH and the nurse has to tick a box which asks whether the patient is on thyroid medication. If so, it allows T3 and T4 to be tested. If not, only TSH gets tested! I have had my T3 tested in the past though and also paid privately once.
Speak soon.
alison57745 Sheepcoat
Posted
how are you doing? Have you found a solution to your symtoms?
I thought I'd update you on mine. So I have finally found my problem or solution. Out of desperation I thought I'd try mixing up my thyroid meds. As I mentioned I am Hypothyroid. I weaned myself off of T4 medication and started T3 only. And WOW what a difference it has made. All the dryness thin skin low libido is gone! I lubricate like a normal woman again and although I dont have a sex drive like my early 20's (I'm 33) my sex drive is back! I feel like I might even have slight sensitivity damage from years on that horrid medication. It was clearly not right for me. And I'm not sure if its the T3 or the fact I stopped the thyroxin.
If you still have symptoms I suggest try T3 again and also have you heard of "The mona lisa touch" please google it and look into this laser treatment. It was going to be a last resort for me if my med change wasnt going to work.
Sheepcoat alison57745
Posted
I still haven't got anywhere with my symptoms unfortunately. I saw my endocrinologist again last week and she is trialling me on Bromocriptine which is a medicine to bring the high prolactin down, so will see if that does anything. She said if that doesn't work she will try me on natural thyroid hormone (NDT) which is a mixture of T4 and T3. I really couldn't tolerate the T3 alone- it gave me insomnia and made me feel very anxious and I was only taking a tiny amount per day! (But that T3 came from Cyprus.) I do know that there are different brands and I will definitely ask my endo to prescribe it to me if the NDT doesn't work. That is great the T3 is working for you and you have got your life back after all these years, you must be over the moon! So there is still hope for me :-) I am convinced now that my problem is all thyroid related and it's just finding the right meds.
I've just had a look at the Mona Lisa Touch and I will definitely go for that if none of these thyroid options work, so thanks for that. It is really sad only being 36 and suffering for about the past 6 years, but I live in hope.