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HELP! Elevated prolactin and no libido!

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Sheepcoat
Sheepcoat

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.

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  • sheryl37154
    sheryl37154

    Posted

    I have a prolactinoma (micro adenoma on the pituitary gland secreting excess prolactin). I did not have the usual symptoms as I had a hysterectomy and oopherectomy at age 38. However, I was having severe menopause symptoms even though I was on HRT so my symptoms were ignored for 7 years. Once discovered, MRI confirmed, and given carbergoline to reduce the adenoma and prolactin level. However, excess prolactin causes a deficiency in oestrogen due to a 5-alpha reductase enzyme, and and women require extra oestrogen for apart from your symptoms, to maintain bone density.

    Immediately after having the hysterectomy, I started having severe symptoms of Iron Overload (Haemochromatosis) but my dr in denial about it and did not diagnose till 9 years later when one of my hips broke up from osteonecrosis (my blood was so thick with iron it could not feed the finer capillaries so the bone died).

    So please ask for a Haemochromatosis test (however your ferritin iron (in Iron Studies) will probably not be high if you are still menstruating) as it causes damage to the pituitary gland, robs your body of oestrogen, and causes infertility.

    Keep on the cabergoline and if you have an adenoma it will eventually decrease even if you do not have an MRI to prove it. It is safe to keep using for years, and will not effect being on the pill if necessary. While my prolactin level went up to near 5000 it is now down to 21 and every time I try to reduce the medication, the menopause symptoms come back. Endocrinologist has decided it is better for me to keep oestrogen in my body as continuing to take the full dose of cabergoline will not do me any harm, although it will increase your libido!

  • Sheepcoat
    Sheepcoat

    Posted

    Hi Sheryl,

    thanks for your reply. I just noticed that my post was March 2012 and I STILL haven't had a diagnosis yet! I am finally going for a dynamic MRI scan next week which will hopefully show something up as this is ruining my life. I'm not able to have a boyfriend because of it, I'm peeing clear/diluted urine, and feel absolutely terrible and fatigued after exercise (slurred speech, mental cloudiness, dizziness).

    I did have my iron ferritin level tested a few times...it came up high once but the doctor said it was nothing to worry about, and then I had it tested a few more times and it was normal. What is the specific test done for haemochromotosis? If it is a specialised test my GP won't be able to do it as it would have to be a consultant test I think. So does the haemochromotosis cause the pituitary problems? Do you take anything for the iron overload?

    I am not taking cabergoline now as my endocrinologist discharged me saying that I didn't have an endocrine problem. He only gave me cabergoline for a month as a trial, but because I said I didn't notice anything different, he just discharged me saying there was nothing more he could do and wouldn't give me an MRI scan. I have ended up having to pay for it privately. So fingers crossed something will show up in the MRI so I can finally start having treatment!

  • sheryl37154
    sheryl37154

    Posted

    Hi Sheepcoat, I am so sorry your drs are in denial. I know what it is like as I have had years of it, and I have heard such disastrous stories about not being able to get a diagnosis (particularly regarding Haemochromatosis), that I started a Support Group for them, so that I can direct people to drs who are not in denial and know how to treat Haemo. In the meantime, people's health are being destroyed by ignorance.

    You need a genetic test for Haemo but you will not likely be able to get one when your levels are not high enough (probably because you are still mentruating). Do you ask for a copy of your blood tests, by the way? Some drs are known to have ignored high levels, considering them good enough.

    If you can find a near relative with Haemo (anyone with liver problems, diabetes, heart problems, arthritis) and Celtic ancestry, then it should be a requirement for you to have a genetic test for Haemo. You could also try an Irish doctor - a young one - they are more conscious of Haemo and hopefully all the complications like pituitary gland problems.

    Treatment for Haemo is the taking of about 450-500 mls (1/2 pint?) of blood every so often. If your levels are high, it could be weekly. You can be proactive on the Haemo front by going and giving blood donations every 3 months. The blood bank will soon let you know if you are ineligible or if your haemoglobin is too low on that day. Yes, Haemo does cause pituitary problems and many others, including infertility.

    See if that reduces your symptoms, and after a couple of donations, have your prolactin and other pituitary gland hormones checked again. If they are out of whack, e.g. prolactin - assert yourself over the cabergoline and keep taking it. Don't worry about the MRI - says me, who has had many! In the long run, it is more important to get the treatment.

    Talk to your gp about how you can increase your oestrogen if possible, though they will probably deny that. You could try alternatives, although i never found any success with them. I do try to consume soy products though, e.g. soy milk, soy cheese. But surely with your dry vagina problems, your gp will give you a script for vagifem (the best - it is a pellet with its own applicator - inserted 3 times a week) and oestrogen cream which is messy to insert as it all comes out again, but I use it externally to soften and moisten the vulva. I also use Bio-Oil.

    Dr Christiana Northrup, a female hormone guru, recommends dabbing a bit of oestrogem cream on the urethra to strengthen that area to reduce incontinence (caused by insufficient oestrogen). I feel it works as I have that problem whenever my oestrogen dips. Insufficient oestrogen will eventually cause your vaginal walls and ceiling to weaken and collapse - prolapse. Vagifem is said to help prevent that.

    PS: My endocrinologist told me that the only side effect of continuing to take cabergoline is an increased libido. I promise. :-)

  • Sheepcoat
    Sheepcoat

    Posted

    Hi Sheryl,

    yes it is extremely frustrating when doctors haven't got the right knowledge and are constantly saying they either don't know the answer or try to give a solution for each individual symptom instead of diagnosing the cause. I feel as though none of the doctors have been on my side and everyone seems to think I'm a hypochondriac or something. I read all about haemo a few years back when I was trying to work out what was wrong with me as the only thing that showed up abnormal in my first lot of blood tests was having high iron levels! The doctor even joked and called me the Iron Lady. I had a repeat test and then because it was normal I just had to try and work out what else could be causing my symptoms. I also had one liver function test that came up high but the GP said it was nothing to worry about and think she put it down to me binge drinking on a Saturday night. I have got copies of the majority of my blood tests, but haven't had any for ages. And yes, people's lives get destroyed by doctors not having the right knowledge and people having to diagnose themselves!

    I don't think there are any near relatives in my family with liver or diabetes problems that I can think of, but my dad and all his side of the family have got arthritis. I think I definitely need to change doctors as my surgery have been so unhelpful and clueless...it's been a constant battle even just trying to see a consultant and the waiting times are always so long. I have seen 3 endocrinologists, 2 gynaecologists, a family planning doctor and the consultant I am currently under is a urologist, but he did a cystosopy and a kidney function test using contrast dye, but nothing was found during the cystoscopy and everything normal, and the kidney function was shown to be 'split kidney function' but I still haven't found out what that is yet. I was just told I've got a sensitive bladder and the only way it can be treated is using a catheter or taking tablets that were awful :-(

    Well I think my plan now is to see what happens after I've had the MRI scan, because it might turn out that I've got a micro-adenoma which doesn't produce any hormones, but just blocks their release or whatever. So I will wait and see what the outcome of that is first before going down the cabergoline route etc, because I may not have a prolactinoma, but some other type of tumour. I also don't think a GP can prescribe me cabergoline without the advice of a consultant, and the endocrinologists I saw both discharged me saying I didn't have an endocrine problem. I will definitely start donating blood to see if that has any effect and will change doctors though.

    One female GP I saw said to just take the contraceptive pill for my hormone issues but I already tried that and nothing happened. I hate soy products! :-) As for the Vagifem and those sort of products, I did think about using them but the problem is they won't treat my low libido so I don't see the point...

  • sheryl37154
    sheryl37154

    Posted

    Hi Sheepcoat - I often wonder how people come up with such interesting names!

    But test results did show that you had high levels of prolactin!? It just does not go away altogether with a few doses of cabergoline. You should be monitored. My gp does give me scripts for cabergoline but maybe that is the because my endocrinologist reported back to her.

    Regarding your iron studies, was your Transferrin Sat % >40? Even if your Ferritin Iron may not have been very high, the TS% indicates Haemochromatosis.

    I am not so sure that vagifem does not have an impact on libido. It is supplying oestrogen direct to the important bits, plus using the cream on the outside important bits. Really worth a try. And my husband seems to get interested whenever I insert a vagifem pellet, so I must be sending out the pherimones (or whatever)!

    Having said that, i did see on Dr Oz or was it The Doctors, a young married woman had lost all interest after giving birth to their child and after physical tests, it was found that a nerve had been damaged. I missed the treatment part.

    I can't post the url here because this website has a problem with urls so I can try to direct you to the Iron Disorders Institute organisation, go to the forms page, and print off Haemochromatosis Reference Charts (2.27MB). Page 2/2 will give you normal levels relating to haemochromatosis, and also all the organs that are affected.

    Let me know how you go with your MRI.

    • Sheepcoat
      Sheepcoat sheryl37154

      Posted

      Hi Sheryl,

      excuse the delayed reply- I was waiting for my MRI results to come back before I replied to you, and I ended up having two MRI scans- one with and one without contrast medium.  Well my results were all clear for tumours/prolactinomas etc, so that is good news, but I still have no diagnosis and symptoms remain the same :-( I was actually devastated that nothing was found!

      Yes, past test results showed that I had high levels of prolactin and it came up high 6 times, but my endo said it wasn't high enough for it to be a tumour, and turns out he was right...I think the highest it got to was 649 and then it came down to 398 or something.

      Some of my iron tests did come up high; serum albumin was 51 g/L and 50 was the max it should be, so it was only just above. At the same time as having this test, my serum transferrin was 2.94 g/L  and should be less than 3.6, so that was OK. I had more liver tests a few months later and my aspartate transferase was 54 IU/L and the max should be 36, but again, the doctor said nothing to worry about. At the same time as having that test, my albumin was 45 and within normal range. A year later in 2012 my albumin was 47 and so still classed as normal (max being 50). 

      I've read up a lot about haemo and I do seem to have all of the symptoms, but nothing showing up in my results. I haven't had liver tests for a while though so think I will go and get those done again. I am also thinking of having the HFE gene mutation test and that should give me answers. I've found a company online who do it for £195- a lot of money but I need to get answers.

      I may give Vagifem a go and see if it works miracles :-) I just feel very reluctant to try it as I am only 34 and just want to be able to produce my own lubrication and get my libido back naturally :-( 

      Hmm, I don't think I've got any nerve damage in that area as I've never had any children (and probably unlikely to at this rate)! I feel as though I'm infertile as don't produce the necessary lubrication for intercourse and my discharge is very sparse, along with my periods.

      My endo was willing for me to continue taking cabergoline when he gave me the month's supply, but because I didn't notice a change after a month he didn't give me that option. Plus when I was taking it, I developed weird lumps in my armpits!

      Anyway, I would really appreciate any further advice from you Sheryl. 

      Thanks. 

  • ATM
    ATM Sheepcoat

    Posted

    Hi Sheepcoat!

    Have you made any progress with answers? I have identical symptoms to yours but with added fatigue (my twitch is definitely associated with fatigue). 

    I had symptoms as early as 11 or 12 from memory. I had lactated, migraines, seizures, my period stopped.. After years of doctors ignoring the whole story and only acknowledging the individual symptoms (I was taking up to 14 tablets a day at times to treat the various things they had come up with) I finally saw a doctor who diagnosed me with my macroprolactinoma. I began cabergoline treatment but then needed surgical resection. My hormone levels were good for 1 year, then began to creep up. I noticed the changes in my body again but the docs and specialists kept saying they were within the normal range and sending me on my way. I knew it wasn't right. I by some miracle fell pregnant in 2012 and got referred to a new specialist and he confirmed after my pregnancy that the adenoma was recurring. He has since explained that in some people, there seems to just be a lesion of some kind that will always be present, and whether or not it shows up on an mri is redundant. He said mine will always be there, but if it's not seen on a scan it's because it's too small for the resolution of the scan. I'm still prescribed cabergoline but for the past couple of months have not taken it due to moving interstate and a bunch of other reasons that are not good enough. After coming to the realisation today that I have zero sexual desire, severe vaginal dryness, etc I've started taking it again and hopefully it will rectify quickly. 

    It really sounds like an anterior pituitary thing to me and I don't think that the scan being clear is 100% that there is no issue because my first MRI many years ago also showed absolutely nothing yet I could have fed a baby (I was to young to realise libido and dryness issues at that point lol).

    I really hope you're closer to answers but I'd be really interested to know your progress. 

    • Sheepcoat
      Sheepcoat ATM

      Posted

      Hello ATM,

      thanks for your message. 

      Well I still haven't got anywhere with answers, but think I may be getting somewhere. I paid privately to have a gene test for haemochromotosis, which came back negative. I then went on to get a thyroid antibodies test which came up high, and so this shows that something is attacking my thyroid. I'm still not sure that the whole problem is related to thyroid function though, as my thyroid hormones are showing as normal! It's all very confusing. I am waiting for the results of a urine test for diabetes insipidus (which is caused by lack of ADH hormone from the pituitary), and I'm also waiting to have a thyroid scan. Hopefully something will show up. I still think it is ultimately a pituitary problem though. 

      So you've had a right runaround with getting answers too then! That is great you were able to get pregnant! I don't think that could happen for me at all. My period lasts for about 2 days and I don't produce any fertile fluids! I suppose having a lesion that is too small to show on a scan could be very likely. Although I've never had any problems with producing milk etc. I mainly suffer with fatigue, twitches, severe alcohol/exercise intolerance, clear/diluted urine even when dehydrated and urinary problems.

      I will certainly keep you posted of any progress and it's nice to have support from people with similar symptoms, even if we have different illnesses :-)

  • sheryl37154
    sheryl37154 Sheepcoat

    Posted

    Hi Sheepcoat, you have moved out of my range of experience.  Iron Studies usually include 4 tests: serum iron, TIBC, TS%, and ferritin iron.  It does not include albumin, that is probably under full blood count, or liver function test??  You did not mention what your serum iron and ferritin iron was.  However, your TS% seems low, although measured differently, it should be >45% to indicate hereditary haemochromatosis.  Unless you have helicobacter pylori or celiac disease, both of which can cause low iron studies results.  Your gp can order an Iron Studies test, and HP tests.

    ATM, I am so sorry that your diagnosis was left so long you had to have surgery.  It must have been rather disturbing to have such symptoms as a child.  Yours were such classic symptoms too.  I did not know it could return even after surgery.  I am trying to reduce my carbergoline dosage as my prolactin level is very low now, but I get severe menopause symptoms when I do which means the prolactin is still making my oestrogen (hrt) ineffective.

    I have not heard of getting lumps in armpits from cabergoline, have you?

    • ATM
      ATM sheryl37154

      Posted

      It was confusing, that's for sure. I remember thinking it was normal then realising that none of my friends had those particular changes. 

      The recurrence rate is actually very high for these issues. In excess of 70%! My specialist has said I'll stay on cabergoline long term, at least until im done having children because prolactin inhibits fertility. The problem with not taking it even beyond family planning is quality of life issues with intimacy. I had to see a cardiologist as chronic use has been implicated in a heart problem, but I can't explain the lumps in the armpits. It could have been a coincidence? The first time I started this treatment my immunity was terrible and I got loads of sicknesses but that was due to the high dose. I suffered severe night terrors from the meds so never slept more than 30min at a time and accumulated about 3-4hrs a night. At that time I was on 1x500 microgram tablet 2-3x a week. Now I'm meant to be on only 250 micrograms a week as a maintenance thing and acute side effects are minimal. The effects of not taking it are much more drastic for sure. 

      I'm interested to know of sheepcoats progress and dose of cabergoline. 

    • Sheepcoat
      Sheepcoat sheryl37154

      Posted

      Hi Sheryl,

      I've just looked at my blood results and yes, albumin came under liver function test, but think it's also related to iron. My GP was calling me 'The Iron Lady' when it came up high!

      When I last had my serum iron tested in 2011, it was bang in the middle of the range at 20 (range 10- 31), and my ferritin was normal at 62.7 ug/L (range 5- 148). 

      As for the lumps in the armpits I am 100% sure it was the Cabergoline. It was one lump in each armpit! I've never had that in my life and never had it since, and I wasn't taking any other medication at the time. They appeared after about a week of taking Cabergoline. It was pretty scary. I think medicine causes all kinds of weird symptoms in each individual though. 

    • sheryl37154
      sheryl37154 Sheepcoat

      Posted

      Sheepcoat, I am wondering too.  Bit old now, but albumin really has nothing to do with iron.  I am sure you would have googled it.

      it really does sound like a pituitary gland problem.  I am still taking 2 x 0.5mg a week.  Actually for a long time, I moved to 1 every 4 days in an effort to reduce the dosage but could not go any further without having meno symptoms.  I felt I was sitting on a razor's edge with these symptoms, that one day I had an epiphany and thought maybe I should go back to 2 per week.  My night head sweats and the feeling of having a hot head all the time decreased.

      Although my endocrinologist has never said, I guess it is proof that prolactinoma problems never go away.  I mean, I am talking 7+ years since diagnosis and commencing carbergoline.

      I guess the lumps under your armpits were swollen lymph glands - maybe a sign that toxins were on the move.  I had a few lymphatic drainage massages years ago, gosh they made me nauseous, i.e. the toxins in my body being drained into my stomach.

       

    • Sheepcoat
      Sheepcoat sheryl37154

      Posted

      Hi Sheryl,

      yes I think albumin is to do with the liver so I have no idea why the doctor was calling me the Iron Lady- it must've been to do with my iron results, but I don't remember them being high! My doctor wasn't very good though and I have changed surgeries now.

      Yes I agree it does sound as though it's pituitary-related. Thing is, I have had a pituitary MRI scan with and without contrast and no abnormalities were found. However, my prolactin has increased to 804 from about 641 2 years' ago. I am seeing another endocrinologist (the fifth one) and she has put me on cabergoline, but this time I will be taking them for 4 months instead of just one month like last time. I am taking 250mg (half a tablet) once a week. I took my second half on Wednesday. I've been having vertigo, decreased appetite and a bit of nausea, and constipation so far. I will see how I feel in 4 months' time and whether my symptoms improve. I have also had thyroid blood tests and have got high antibodies which indicates autoimmune thyroiditis...Having thyroid disease can increase prolactin and lower vitamin absorption, but doctors seem to think my symptoms aren't thyroid-related because my thyroid blood results are too normal. I am still going around in circles after 8 years with no answers.

       

    • sheryl37154
      sheryl37154 Sheepcoat

      Posted

      My thyroid levels were always in the normal range even though I had the symptoms of thyroid problems.  I even pointed out some swelling in the region of my thyroid a couple of times.  Just fat I was told, even though I am skinny everywhere else!!

      Eventually when checking out a tumour on my parotid gland, it was found my thyroid was multi nodular on one side.  So much for blood* tests!  Had to have both the tumour (deadly one) and half my thyroid removed within 13 days of each other.  Had the thyroid done first - boy, was I feeling ill.  Thyroids do not like being interfered with - then had to front up for the tumour removal.

      Trying to be healthy is so difficult particularly when there is so much resistance by the drs!

      Luckily I had VERY GOOD drs for my tumour and they are still monitoring me with MRIs every three months nearly 5 years later.

      I never had any problems with carbergoline, it was such an instant relief for me.  Are you taking any other medication that may not go well with carbergoline?

       

    • jen87hsu
      jen87hsu sheryl37154

      Posted

      Sheryl. Sorry to hear that. I am not on any other medications other than cabergoline. I just feel awful. Muscle pain facial twitching fatigue moods no libido painful urination. I am desperate to figure out what else can cause mild elevations in prolactin. How do they check your parathyroid function?
    • sheryl37154
      sheryl37154 jen87hsu

      Posted

      I just googled it - obviously a blood test, but a not very effective test given sometimes is a urine test.  It belongs to the endocrine system, and rarely tested.  Hah!! aren't they all?

      Well worth reading up on I think and making a suggestion to your dr and endocrinologist.

       

    • Sheepcoat
      Sheepcoat sheryl37154

      Posted

      Yes I also seem to have all the symptoms of a thyroid problem but results are always very normal and not even borderline abnormal. I've also got a goitre but apparently only a 'couple' of nodules are on it. I occasionally feel it twitch and sometimes have a slight choking sensation. And yes, so much for blood tests, they don't seem to mean anything where the thyroid is concerned.

      It is terrible that sometimes we have to keep pushing doctors for answers and coming on sites like this to try and get anywhere.

      No I'm not taking any other medication apart from vitamins, but the side effects I'm experiencing at the moment may wear off as I've only had 2 halves of the tablets so far.

    • jen87hsu
      jen87hsu Sheepcoat

      Posted

      Please keep in touch and let me know how you are doing an if you find any answers and I will do the same we have near identical symptoms and my MRI is always negative for tumors. I get so depressed not knowing anyone else with these symptoms. I am 31 years old and feel like an old lady with all these unpleasant symptoms. Again, please keep in touch and let me know if you learn anything new and I will do the same. I am currently on cabergoline once a week my prolactin has lowered to a 2 but I still have symptoms. So frustrating. My thyroid was borderline abnormal for hypothyroidism but since the cabergoline has returned to normal and my ANA was elevated once and lupus makers started showing up in my blood low c3 low c4 yet my lupus test was negative. My doctors felt the need located prolactin were causing autoimmune activity. About the metabolic disorder your doctor suggested I do wonder if this could be related. I am only 95 pounds and used to have a b12 deficiency. It drives me crazy what else could be causing the elevated prolactin if not a tumor. I also have multiple ovarian cysts, I wonder if that could do it? So frustrating!
    • Sheepcoat
      Sheepcoat jen87hsu

      Posted

      Hi Jen, I've replied to your other posts in more depth but it's awaiting approval because I've put a link to a website in it that I think will probably be useful for you. I will definitely keep in touch with you as I also haven't ever found anyone with the same symptoms as me :-( I am 35 and also feel like an old lady and haven't been able to have a relationship for over 5 years because of it. I am also taking cabergoline once a week but have only had 2 halves so far, but I'm not holding my breath. I am being referred to the metabolic dept next time I see the endocrinologist, so hopefully I might be getting somewhere. I know that elevated prolactin can be caused by hypothyroidism and other diseases, but considering your thyroid results have already shown up abnormal I can't understand why your GP hasn't given you thyroxine, because it seems as though the problem might just be thyroid-related...but saying that, I tried thyroxine and it just seemed to make me feel worse, but my thyroid results were completely normal. I  think being hypo can cause cysts too, or they often come together. You should go on a great website called Health Unlocked and then search for Thyroid UK. I've put the link in the other post but you can just google it. You will find a lot of answers on there I think and get some great advice- they have helped me a lot.
    • sheryl37154
      sheryl37154 Sheepcoat

      Posted

      I can't remember if I have mentioned this before and do not have time to reread all posts.  But, have you tried Vagifem pessaries (oestradiol) AND oestriol cream.  When we have excess prolactin we should be given oestrogen.  While your prolactin levels may be low now, maybe your problem bits need a kick start with a dose of oestrogen to get your libido back.

      Also check your ferritin iron - too high can cause same problems as too low.  Too high can affect your hypothalamus which affects your pituitary gland.

       

    • Sheepcoat
      Sheepcoat sheryl37154

      Posted

      No I haven't tried Vagifem, but I had my oestrogen tested in the luteal phase of my cycle back in August and it was actually quite high for that stage of my cycle. My oestrogen was 1006 pmol/L and the range is 81.9- 1251. Even the endo commented on how high it was. My ferritin was 46 ug/L (13- 150 ug/L) and the endo recommended that I take iron supplements as it should really be above 50 to be optimal. I've been taking supplements which seem to have improved my dizziness and faintness. Nothing seems to add up with my test results, they are all over the place.
    • sheryl37154
      sheryl37154 Sheepcoat

      Posted

      Ok, but I am talking about putting the oestrogen pessary and cream where you need it, for loss of libido and dryness.

      My optimal level of ferritin is 34 - that is when I feel best.  Unless your serum iron and haemoglobin is really low, I would not suggest taking iron supps.  They are toxic.  If you need more iron, have part of a broken 500 vit C tablet with your meals to increase the uptake of iron from food.

       

    • Sheepcoat
      Sheepcoat sheryl37154

      Posted

      Well I guess it would definitely help with the dryness that's for sure! Not sure it will bring my libido back though as I've got more than enough oestrogen circulating in my blood by the looks of it, so applying more oestrogen probably isn't going to bring it back. It might be that I'm lacking in another hormone or that there's just an imbalance that's causing the problem. I will definitely give it a go though! Do you know if I can buy Vagifem online?

      My serum iron is right at the top of the range. I asked the endo if it would be safe to take iron supps and she said it would be OK. I'm only taking 14mg a day which is just the recommended daily dose. Apparently, ferritin is the amount of iron stored in your cells and this is what is most important. The supplements definitely seem to be having benefits because I used to go as white as a ghost sometimes and have come very close to passing out quite a few times in the past aswell, (before I started taking supplements). I do also take 500mg of vitamin C each day aswell. I may drop down to an iron supplement maybe every other day or something.

    • sheryl37154
      sheryl37154 Sheepcoat

      Posted

      I am glad to hear that you will give it a go at least.  You may be able to buy Vagifem online in the US, but if in the UK, I am sure you will need a script same as in Australia.

      The normal range for ferritin is 10-120 so your level is ideal (normally).  If your haemoglobin is low (you did not say) despite your serum iron being at top of range - they should investigate that more to see what is not working.  Your TS% is possibly too low - don't know what can be done about that though.  I am always working in the opposite direction.  Check out Iron Disorders Institute website for info.

      I have genetic haemochromatosis and I would often feel I was about to pass out (despite my unknown ever increasing ferritin level).  But it felt like hypoglycemia.  However, every glycemia test I had was normal.  It was never figured out.  I now find it best to eat something as soon as I wake up in morning, and not be late to eat at mealtimes.

      Having your vit c with meals helps increase the uptake of the iron in the foods you eat.  This is something I have to avoid, and I drink tea, coffee, red wine (it is medicinal), calcium products with meals to reduce the uptake of iron.

      I don't know if I have said this before, but avoid those drinks when eating so as to not reduce your uptake of iron.

       

    • jen87hsu
      jen87hsu Sheepcoat

      Posted

      Hey guys, I spoke to my endocrin today. I've been taking cabergoline for 3 months now. My prolactin that was a 70 is now a 2 so the medicine is working on the prolactin but I still feel awful otherwise. I have a history of high tsh and low t3 and was borderline hypothyroidism. Since the cabergoline this has balanced out and is back to normal. I asked her if this prolactin elevation was caused by my thyroid and she said NO. So I'm at a complete and total loss. The prolactin is normal the thyroid is normal but I still have no sex drive, temperature intolerance, muscle aches, facial twitching, brain fog. I can't take it anymore!!!! They see no tumor. There is nothing else abnormal showing up on anything other than a once positive ANA. My iron levels are all normal. I'm at a loss. So depressed!
    • Sheepcoat
      Sheepcoat sheryl37154

      Posted

      OK, next time I see my endocrinologist in a few weeks I will ask her for Vagifem :-) I'm in the UK and I don't think I can buy it straight from a pharmacy.

      Yes my ferritin is in the normal range although the people on Thyroid UK and my endo said that ideally it should be above 50 and around 90 to be optimal. I think a lot of people with thyroid conditions have iron deficiency and so their levels need to be at leat mid-range.

      My haemoglobin was 132 g/L (115- 160 g/L) so that is definitely OK. My TS was 25.1umol/L (6.6- 26umol/L).

      I looked on the iron disorders institute website quite a while back and this was one of the things I was exploring. I had a genetic test for haemochromotosis which was negative.

      I will definitely start avoiding tea/coffee with meals- thanks for the advice!

    • Sheepcoat
      Sheepcoat jen87hsu

      Posted

      Hi Jen, did you manage to read my other two replies to your other posts on here? I really don't believe that your prolactin being elevated wasn't caused by your thyroid. If you've got positive ANA (which shows you have an autoimmune disorder AND you also had a high TSH and low T3), then surely these results would be the reason your prolactin is elevated, as autoimmune disorders cause high prolactin! I think even though your thyroid levels are now normal, symptoms won't go away unless the underlying cause is treated which is possibly thyroid disease, the same as me. I have all the same symptoms as you and have thyroid antibodies as well as nodules and this is the only thing showing up in blood tests that could be causing my symptoms. You need to get vitamin D tested for muscular aches and get magnesium tested for facial twitching, or just start taking a good multivitamin and you will see an improvement in some of your symptoms like I did. I used to get chronic restless leg syndrome which has completely vanished since I started treating it with folic acid.
    • sheryl37154
      sheryl37154 Sheepcoat

      Posted

      And conversely, a lot of people with haemochromatosis have a thyroid disorder!!!  It is such a twisted world!

      Regarding libido, I am sure you know that it is also a state of mind, or fatigue or stress.  If you have not done so, you may have to investigate books, videos, self help, etc. in order to conjure up salacious thoughts .smile  You have to be proactive in priming your mind.

      It won't be long before your husband loses his mojo (even sooner with lack of use), and you get yours back and then it is a whole new set of problems.sad

      Don't forget the oestriol cream too for external use.

       

    • jen87hsu
      jen87hsu sheryl37154

      Posted

      Hey Sheryl! The haemochromatosis is the iron levels elevated correct? My iron is always fine. As for the libido it's 100% medical in my case it's not state of mind at all. I used to have such a healthy drive and then as soon as this prolactin garbage started it went missing in action and I have had no luck at all getting it back. My estrogen and testosterone are all completely normal. It upsets me so much. I wonder if it has to do with dopamine at all?
    • sheryl37154
      sheryl37154 jen87hsu

      Posted

      Possibly - doesn't dopamine dull the reward factor, so that you don't keep repeating an activity that is not good for you?  If so, it is going to dull a lot of feelings and responses.  I really don't know much about it at all - you need to look it up yourself and ask your dr for confirmation.  Cabergoline is the usual medication for a excess prolactin and one of its side effects can be excess sexual needs!!!

      I read that cabergoline is given to those who take antidepressants which cause loss of libido and anorgasmia to offset that problem.  So there are more answers than you may know of - yet!

      While you have a physical loss, I am saying that you can work on priming your mind to improve the situation.

      I don't understand your question "The haemochromatosis is the iron levels elevated correct?"  Can you rephrase the question please.

      But I must add haemochromatosis causes loss of libido too.  Been through it all myself, not only with the haemochromatosis, and my undiagnosed for 6 years prolactinoma, but with menopausal symptoms when my oestrogen hrt was not working.

      What does your endocrinologist say when you tell him/her of your libido issue?  If he gave you dopamine, instead of cabergoline, ask him why.  Dopamine and cabergoline are not the same thing.

       

    • Sheepcoat
      Sheepcoat sheryl37154

      Posted

      Yes, it seems as though thyroid disorders usually come hand in hand with many other disorders/diseases. It's a case of what came first, the chicken or the egg?

      Yes, libido is also a state of mind, although I was perfectly normal until all of this started, and even when I didn't feel like having sex I would be able to produce lubrication for it! (Which I can't do now.) I do occasionally have 'salacious' thoughts :-D but I'm still not able to produce enough lubrication for sex and I don't seem to have any blood going down to that area, if you know what I mean. I haven't been able to have a relationship for the past 5 years because of this problem... :-( It's terrible.

    • Sheepcoat
      Sheepcoat jen87hsu

      Posted

      Jen, a lack of domapine is what causes the high prolactin, which is what the cabergoline is for. The cabergoline increases your dopamine level which then brings down your prolactin.
    • sheryl37154
      sheryl37154 Sheepcoat

      Posted

      Not quite what I read last night on Wikipedia.  In fact, it does say that dopamine will reduce prolactin, but with all the other things it does, e.g. dulls the desire to do things, their example included, from memory, gambling, drugs, excessive sexual activities, alcoholism, it is not the appropriate drug for excess prolactin.  Especially when there is a much better one without those side effects in the form of Cabergoline.

       

    • sheryl37154
      sheryl37154 Sheepcoat

      Posted

      The oestrogen pessaries, and the oestroil cream have collagen building properties, repairing, softening, strengthening, etc. so they should go a long way to fixing your problem.

      In the Wisdom of Menopause, the dr recommends smearing a bit of the cream on the urethra as well to strengthen it against incontinence problems.

       

    • sheryl37154
      sheryl37154

      Posted

      Actually, my apologies Sheepcoat, as Cabergoline is a dopamine receptor angonist, there is something in what you say, but I have not yet read that lack of dopamine causes high prolactin.  Will have to investigate further.

       

    • Sheepcoat
      Sheepcoat sheryl37154

      Posted

      Cabergoline  mimicks the effect of dopamine and stimulates the brain to produce more dopamine. The side effects of having excess dopamine (or Cabergoline) can cause the gambling addiction and everything you've listed above. But that's only when taken in very large quantities I imagine. I did read somewhere that insufficient  dopamine can cause high prolactin, but the main point is that Cabergoline is essentially dopamine.

      I can't wait to try Vagifem! :-D

    • jen87hsu
      jen87hsu Sheepcoat

      Posted

      Do any of you notice alcohol intolerance like symptoms worsen with a glass of wine or a beer? Also do any of you have sleep disturbance? Waking up repeatedly during the night? Also temperature intolerance? Gray hair?
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