Sorry to bother you again but I need help with some results. I'm having issues with heart and autonomic nervous system and even my vision and 2 stone weight loss and have been feeling terrible since March. Although I'm seemingly oversensitive to my thyroid meds, there does not seem to be an issue with my thyroid levels.
Anyway, I've been tracking everything and one thing that struck me over this period is that my problems improve quite dramatically for 3-4 days when I'm having a period or fertile (mine overlap somewhat) and more so than normally indicated as possible so I wanted to see if looking into these would give any information as to what might be going on as all the causes the Docs have guessed or decided is the problem (long covid of course and POTS) would likely not care whether I'm on my period or not and I feel like something hormone related somewhere is off. I've also had zero sex drive for about 5 years now and grow beard hair at certain times of the month although seemingly testosterone is not the issue like I thought it might be. I don't particularly think the sex hormones will be at fault but it might help me work out what drives them or what other non sex hormones/organs are associated with them. Also I do have something that surges after I fall asleep at night for a few hours and can't work out what this is either.
So I tested my female sex hormones in depth when I was on my period and then on day 14 which is normally the peak of the worst and the middle point between the end of my period and the start of my next. I only have a 21 day cycle (always have done and conceived with one teeny weeny accident on this so assume my normal) so it's a little tricky to work out what phases and what not and also when hormones are likely to peak etc etc.
I really do not know so much about these and annoyingly I got no comments from medichecks docs even though I did not order these as express like I normally do. Any information on any of the below tests or even just partial knowledge of any of this would be hugely appreciated as apart from the basics of FSH, LSH and oestrogen during follicular phase, I really have no clue whatsoever.
a few sets of follicular period day 2 or 3 of cycle when you should get them tested and all seemingly normal
14/06/21
FSH 10.1 (3.5-12.5)
LH 3.8 (2.4-12.6)
Oestradiol 130 (98-571)
Testosterone <0.4 (0-1.8)
Free Androgen Index Unable to calculate (would imagine due to testosterone result)
Prolactin 206 (102-496)
Progesterone 1 (0.2-2.8)
SHBG 68 (27-146)
21/05/21
FSH 10.1 (3.5-12.5)
LH 4.4 (2.4-12.6)
Oestradiol 137 (98-571)
05/03/21 (day after I was hospitalised with heart etc and later in follicular phase but a few days after period)
FSH 7.54 (3.5-12.5)
LH 10.9 (2.4-12.6)
Oestradiol 588 (45.4-854)
And then one set of the ovulation period which does have a few over range:
FSH 10 (4.7-21.5)
LH 9.9 (14-95.6) UNDER RANGE
Oestradiol 157 (177-1153) UNDER RANGE
Testosterone 1.6 (0-1.8)
Free Androgen Index 2.7 (0.2-7.1)
Prolactin 704 (102-496) OVER RANGE
SHBG 60 (27-146)
Progesterone 4.9 (0.4-38.1)
I swear I wasn't going silly with sex hormone tests - they were mostly just part and parcel of other larger tests apart from the last two
Honestly anything you can tell me about any of the above would be really useful as never really looked into this area in any depth so clueless. I'm assuming the obvious is Prolactin but no real knowledge of this or how high is too high either.
Many many thanks for any help whatsoever.
Sarah
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Hi Sarah,Ask your GP to refer you to an endocrinologist who knows about pituitary disorders. A micro prolactinoma on your pituitary, a small tumour less than 10mm, might be the cause of your issues.
Your second blood test flagged prolactin as over 500 which is the top of the naturally occurring range. You’d need to have an MRI to confirm this & perhaps be prescribed medication to shrink it if that’s appropriate, or get help to manage your symptoms yourself (as I do).
Don’t panic as it’s quite a common issue, though usually undetected. You’d have worse/more obvious symptoms if it was a macro adenoma that required surgery.
If you want helpful information, The Pituitary Foundation is a great organisation to go to for advice, like Thyroid UK. There are local groups dotted about the country that could be supportive, though I doubt there are physical meetings at the moment.
Many many thanks for your response - I will be talking to my endo in a month or so and likely faster just to wait for this than going to the GP perhaps? Not sure if he specialises in Pituitary but maybe get the ball rolling.
However I do have some questions on the off chance you know the answers - would high levels of prolactin caused by a prolactinoma normalise for a few days while on period - is it theoretically possible one of the other hormones or changes during this time manage to override it somehow.
Also, when I was in hospital for a few days in March, I was submitted due to concerns about my brain as I woke up with a swollen eye, blurred vision and blood shot eyes, couldn't speak properly or stand up, constant urination and profuse sweating and had horrendous pain and tingling stemming from the base of my skull at the back etc. I was not aware of my heart issues at this point - just unable to do anything. While I was lying down in hospital, when doing the routine checks, they kept commenting how fast my pulse was (130-140 lying down) but didn't investigate further as not the concern at the time although did mention POTS and noted sinus tachycardia. They did however do an MRI and CAT scan on my brain if I remember correctly (wasn't quite with it but think it was both- can check the discharge note) to look for issues with blood flow, and clots/bleeding in the brain etc and nothing was found to be abnormal in my scans. Would this not have picked this up or is it that they would have needed to look very specifically at the pituitary gland to have been able to pick up things so small?
It was only after I left hospital when trying to move about and do things that it suddenly became apparent that my heart was in a very bad way. I since had checks on my heart including some adrenal urine tests but I realised a couple of months later that every one of these tests were just so annoyingly undertaken when on my period. Not via some fluke, I think just because I tended to call to book them when on my period as brain feeling a little more with it and was more functional and then they tended to be booked in for 2-3 weeks later as the next earliest time (when I was on my next period)
Also, it still doesn't quite fit with other symptoms from what I just quickly read - as in not seemingly listed with heart issues and most seem to gain weight with prolactinomas whereas I just can't stop losing weight. Plus other odd things like my nails are growing at a very fast rate plus my Thyroid labs, although okay, are not quite in line with my normal ones with a TSH that isn't quite behaving as predictable as it usually does. My periods are still pretty regular too although they are sometimes a couple of days early or later than expected rather than the 21 days on the dot like before. I do have facial hair at certain times of the month though that fits.
In regards to the obvious symptom of galactorrhoea, this is not a very helpful indicator in my case as I've had this issue since I I was a teen. It was looked into in depth back then including quite a few prolactin tests but elevated prolactin was not found to the cause - just a couple of faulty ducts which I never had removed as not really a big problem and wanted to keep the choice open to be able to breast feed later in life so I can't really use this as a clue lol!!
Sorry for all the questions and many thanks again for any info you have.
You're welcome Sarah!Sorry I can't give you answers to everything you asked as I'm unfamiliar with how a prolactinoma & wayward hormones might affect your heart & brain. The pituitary looks a bit like two tiny petit pois sized testicles on a stalk, so I assume too small to notice unless a doctor was looking for something in that region. ohsu.edu/brain-institute/un... I suggest contacting The Pituitary Foundation for specific help as it's likely your endo will be as clueless as they seem to be with common thyroid issues.
I think someone reliable would need to look at your MRI again or do another to see if you have a pituitary tumour. I think doctors often ignore what's outside of their speciality so the ones that interpreted your last scan could have been looking for something else o ignored what they're unfamiliar with.
From what you've written re galactorrhea & your periods, you may have had a prolactinoma since your teens. With hindsight, I had symptoms from puberty which were only picked up the year I turned 50 when I was fortunate at the time to have access to a university medical library to read up about it. My prolactin levels were just short of 1,500, though have been in high normal range on other occasions, so it was chance I was tested at the right time or I'd still have untreated hypothyroid symptoms (or the FM that my ignorant GP diagnosed). My TSH was flagged as over range on the same tests, but I've had to self-medicate to ameliorate my hypo symptoms that my endo's insist I don't have. It's frustrating, but unless you're very lucky, you might have to help yourself.
That's an interesting thought - I never really questioned it at the time nor reviewed it since now that I know more but thinking about it - problematic ducts really doesn't add up or make sense does it
It was tested to be premilk kind of thing - like when you're pregnant but not the stuff after you give birth when actually breast feeding. Yeah faulty ducts makes no sense whatsoever so probably just fobbed me off with some random cause!!
Apologies, I didn't quite understand this bit:
"so it was chance I was tested at the right time or I'd still have untreated hypothyroid symptoms (or the FM that my ignorant GP diagnosed). My TSH was flagged as over range on the same tests, but I've had to self-medicate to ameliorate my hypo symptoms that my endo's insist I don't have"
Sorry but I didn't quite understand what the prolactin test result of 1500 had to do with the untreated hypothyroid symptoms?
My thyroid went around the same time as the galactorrhoea started but was later put on T3 only in the end as endo couldn't get my TSH down and stayed that way for some years until a little while ago when tried to switch some of it back to T4 against the wishes of the endo until mostly on T4 as was starting to have difficulties after I assumed my thyroid had died and had no t4 level but it's been a hassle in the few years since and just never feel right anymore with everything getting worse. As mentioned, TSH is just not behaving like it usually does - won't really budge from 0.3 to 1 no matter if purposefully go low or high which is not making any sense to me. Have started to switch back a little more to T3 again to see if it sorts it out or is part of the problem but I'm struggling to tolerate it with my heart! My endo is not all knowing but I've been with him since I was in my 20s and I can manipulate him into doing stuff for me by gently seeding things as his idea
Yes I know exactly what you mean about helping myself out - i was diagnosed with so many things over those decades - apparently all stuff I could do nothing about, even failing adrenals but managed to fix it all one way or another myself. Nearly all the tests I've had done since hospital, I've paid and sorted all myself as they don't want to do anything but put it down to long covid which I haven't had this year and put me on ivabradine which would just be a temporary sticky plaster. Luckily I managed to save a little over lockdown as worked from home and didn't pay for after school clubs etc.
I'm sure a lot of doctors make excuses, blatantly lie, or tell us it's psychosomatic when confronted with something they don't understand but won't admit their ignorance or have a clue where to refer us to someone who might help. It could be that yours didn't have a clue what causes galactorrhea so attributed it to pesky hysterical female parts.
I had some routine blood tests which flagged up high prolactin, three times over the 500 range that indicates a prolactinoma, as well as high TSH. Secondary hypothyroidism is caused by a pituitary rather than thyroid issue, though the symptoms are the same. I'm sure it's possible to have issues with both the thyroid & pituitary at the same time, as well as tertiary hypothyroidism from the hypothalamus. I treat myself for as none of the endo's I've seen seem to be able to connect my symptoms from the cause, even when I've waved relevant text book passages under their noses during appointments.
TSH aside, how do you feel? Have you tried taking NDT or glandular supplements rather than synthetic hormones? Expensive, but that might be more suitable for you & your heart condition. I feel better on natural thyroid hormones than T3 though I take a tiny amount some days.
Mel
Higher T increases sex drive in females! you also need T like males need E to make things work/function as males with no E are more or less infertile.
Prolactin to high in either sex causes issues mine was 600 odd ive a P tumour but things like Omzaparole/Lansoprazole increases it.
Thank you. I'm not on any drugs other than thyroid meds although I've just started iron as can't keep my levels up for some reason. I was obviously suspicious of my blood sugar levels at first with some of the symptoms especially as I couldn't really tolerate sugar or chocolate at all for a while after being hospitalised and knowing it had crept up over lockdown due to working from home and much less exercise - I think the Hba1c in June 2020 was somewhere around 40 (would have to double check for exact amount) which was quite an increase for me. I expected it to be much higher by March 21 as I had done even less in the months since that test due to increasingly just not feeling right and doing less and multiple isolations in a row due to covid around me. However, strangely the day after being in hospital it had dropped back to my normal level of around 32 instead and has come back again at 33 a couple of months later in May. They would have tested them while in hospital too as they did quite a few bloods tests and although I don't know the results, they said they were all normal.
However, I still do not quite trust this test as I have a sneaky suspicion that I might have a higher turnover of red blood cells and/or higher levels of haemoglobin perhaps which could theoretically impact this test. I did get a finger prick blood glucose kit and measured over a number of days and they were admittedly more erratic than usual and sometimes going over 10/11 which could happen even after a low carb/sugar meal. However, other times they were at 5 when tested 1-2 hours after gorging on Pizza plus always okay in the mornings so it perhaps seems something else is making them a little more erratic - whether it be my adrenals or autonomic nervous system which can mess with them.
Maybe I should do a home made glucose tolerance test to rule it out as an issue properly?
Mismanaged hypothyroidism can cause a rise in prolactin because it correlates with TSH. Low thyroid hormones causes an elevation in TRH which can encourage higher prolactin along with TSH. Perhaps when your endo couldn’t get your TSH to lower it was because your prolactin was high.
High prolactin can also be caused by a tumor as BadHare has suggested. Tumors are generally benign but when large can put pressure on the optic nerve, cause headaches & visual disturbances which you have experienced. However, tumors generally produce larger amounts of prolactin than yours. Some of the numbers on this forum have been huge. I do not know if this level is prone to variation as yours seems to be but other symptoms of high prolactin are facial hair & galactorrhea.
In normal behaviours prolactin is seen as higher during the ovulatory & luteal phases than during the follicular phase. In unusual behaviours high prolactin can reduce FSH & LH resulting in infertility and abnormal periods (just one of the reasons why TSH has to be kept low for conceiving & during pregnancy).
Maybe something to discuss with your endo on the next visit.
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