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High prolactin... prolactinoma?

High prolactin... prolactinoma?

Hi,

I have just received my latest blood results and my prolactin is almost double the "normal" limit. My free T4 seems to be in range and I have a vitamin D and folate deficiency.

My prolactin has been elevated for four years with an absence of periods and milk from the breasts (no pregnancies). My doctor doesn't seem to think this is too much of an issue, but I feel the lack of fertility should be issue enough let alone the underlying cause.

Medication has been ruled out as the cause previously as my medicine was altered or stopped for sometime and my prolactin was retested etc. It is actually steadily increasing over time.

I wondered at this level is it possible the increased secretion is due to a prolactinoma or are the levels too small? Does anyone have any personal stories to share?

Thank you! :)

17 Replies
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Have you had an MRI scan of your head?

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No I haven't :)

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There are several reasons for elevated prolactin levels to include certain medications and an MRI as Mouldyoledoll suggested to rule out any growth on the pituitary gland.

There is a correlation between thyroid problems mainly Hypothyroidism and Hyperprolactinemia and a stronger association between hyperprolactinemia and the immune system.

Some fertility issues and hypothyroidism also go hand in hand.

pituitarysociety.org/patien...

T4 levels are not enough to rule out hypothyroidism. A full thyroid profile with T3 and thyroid antibodies thyroglobulin antibodies (TgAb), thyroperoxidase antibodies (TPOAb)

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Hi, I did write a letter to my GP requesting the full panel a few weeks ago as my TSH has always been between 3.0-3.7 and I have a basal temp of 35°C. I have many other symptoms of hypo.

I'm thinking at this point if I can gather the money I will possibly order a private full thyroid panel just to rule it out properly. Would it be a good idea to pursue the prolactin first?

The only other diagnosis I have is Ehlers Danlos Syndrome and I don't believe there is any correlation.

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Personally, I'd start by addressing the thyroid and any auto-immunity first. Your Temp is very low at 35C and your TSH is showing is slightly elevated and an indicator of a struggling thyroid. Your vitamin D levels are very low as well. This needs to be addressed.

Can you push so your GP can authorize the full thyroid and antibodies as well as B12, Ferritin, and CRP?

Otherwise, there are two reliable finger prick tests: 1/ Blue Horizons which is 'Thyroid plus 11', 2/ Medichecks have 'Thyroid check ultra'.

Either one of those tests will give you a full thyroid profile and the status of thyroid autoimmunity.

Plus, CRP, an inflammation marker which might come high, along with the levels of ferritin and B12. Often with an existing auto-immunity, both Ferritin and B12 will come low. However, I would not be surprised with your high prolactin for your Ferritin levels to come high. Prolactin decreases hepcidin, which can increase blood iron levels. Your genetic background with a confirmation of auto-immunity might lead to early multiple sclerosis.

Totally avoiding gluten will help with auto-immunity and there is scientific evidence to suggest that high levels of selenium can also reduce prolactin levels as well as thyroid anti-bodies.

Once prolactin levels start to drop your estrogen levels kick in again and you'll start to ovulate. To conceive and to maintain a pregnancy, your thyroid levels ought to be optimal.

I hope this helps!

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Heya thanks for the detailed reply. I did try to push for the full panel but they only ran free T4. In my request I included all of the ones you mentioned.

I had B12 done previously which was 300 in a range of 180-900 or something like that. So low, but not low enough for concern.

I was prescribed 20000UI of vitamin D a day for two weeks, but I still feel awful! I can't stay awake for a full day at all. It's horrible but to keep going back and being the one to ask for tests, in starting to feel like a hypochondriac 😣

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One very important thing to keep in mind....you are not a hypochondriac. You are simply very ill. You'll start to feel better when all your layers of illness are unfolded and addressed and treated properly, one at a time, in order for your systems to become functional again.

Your B12 is way too low and this is another thing to add to your list of supplements. With auto-immune diseases and with hypothyroidism, optimal levels of b12 are the higher end of the range and it is acceptable to have them a tiny bit above, 900-1000.

Keep taking the loading dose of Vitamin D and take it with your main meal as it needs fat to be absorbed.

Keep pushing and have another appointment with your doctor and explain in details that you may be suffering from an underlying immune disorder; otherwise, three things to keep in mind:

1/ the possibility to self-medicate

2/ the learning curve and the trial and error that go with it and until you balance all your biochemistry levels.

3/ the expenses that go with it.

You are very welcome!

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Hiya I should have mentioned I take multi vits and fish oils as well as daily Vit B tablets. So I would have expected to see my levels higher too. I have a 20 minute appt with a more sympathetic Dr on Wednesday. I'm trying to put a list of things to discuss together at the moment.

I know we will be addressing the recent blood tests and the response to the Vit D treatment, how do you think I should bring up the other things?

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It is very good idea to prepare a list of what you'd like to draw his attention to. Explain the link between auto-immunity diseases and high prolactin levels and that yours are nearly double the top of the range and that you suspect that you may have Hashimoto's.

There is one way to find out and that's to do a full thyroid profile which includes T3 levels and antibodies. Also, the link between good thyroid levels, mainly T3 and the ability to conceive and to maintain the pregnancy until term.

This should be a start.

Try to present facts and persist with your rationale and as much as you can try not to get emotional.

Then explain the fatigue, how you feel, and the compromised quality of life at your young age.

Furthermore, the stress generated from your strong desire to have a family and the inability to conceive might add a toll on your relationship/marriage.

Besides with your genetic condition and the remain untreated immune conditions could develop into MS.

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I was asked to get a repeat prolactin test to ensure it wasn't an anomaly (even though it's been high for years!)

I had my blood drawn yesterday and the results are already online in less than 24 hours. That's weird because it took 15 days last time.

This time my levels were:

Serum prolactin level1083.7 mu/L

Abnormal result< 400mu/L

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Thanks for sharing. Good call to repeat the test but as you can see your prolactin levels have increased again. Have you spoken with your doctor since you got the new results?

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I am seeing her tomorrow morning : )

I only just got the letter asking me to get the repeat test, so I'm actually really happy they are back so quickly as it means the newest result can also be discussed tomorrow!

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Very good news :-) and Good Luck! I have a feeling that based on those recent results/test, they are likely to assess other things for you.

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Hi researcher, I have posted an update below :)

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High prolactin can be caused by hypothyroidism

emedicine.medscape.com/arti...

Would recommend full testing via Medichecks or Blue Horizon

thyroiduk.org/tuk/testing/p...

TSH, FT3, FT4, TT4, both TPO and TG antibodies and vitamin D, folate, ferritin and B12

All thyroid tests should be as early in morning as possible and fasting. This gives highest TSH and most consistent results

List of hypo symptoms

thyroiduk.org/tuk/about_the...

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Just wanted to update everyone as I know people find these threads helpful when they are researching their own issues. Here is what has occurred since the time of me starting this thread:

1. Followed advice of members here and pursued prolactin investigations.

2. Repeat tests were persistently high so GP ordered brain MRI.

3. No lumps or tumours detected on scan, so referred to endocrinologist with a six month wait.

4. Saw endo today and have been prescribed 250mg Cabergoline to combat the hyperprolactinemia. Yay! I also have a long-term prescription of vitamin D.

5. I questioned if this treatment would help with the overwhelming fatigue and tiredness I feel, or if that was a result of EDS. He said it was unlikely, but has requested some further blood tests.

I recognise the TFT thyroid tests, B12, folate etc. However he has put down for them to test cortisol and FSH. I have had numerous tests over the years of navigating this health minefield and these are two that I have never come across or had; can anybody expand on why he might have requested these please?

He asked for me to have my blood taken today, however it was 4pm at the time and I know from experience that time of day can significantly impact TSH, in a country where the TSH parameters are already so tight. So I am going first thing Monday morning instead; which will also give a more accurate picture of the prolactin and cortisol levels!

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hey. It's always good to post updates like this, it's helpful.

I had some bloods taken a while ago, and my endocrinologist is repeating the thyroid and prolactin levels, as they showed some abnormalities. Showing that I'm hypothyroid.

I haven't had a proper period in 6 month, and so that's another reason to test the prolactin.

I am also going first thing Monday morning for bloods. So good luck!

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