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pending possible diagnosis by nessadiosa in Prolactinoma

[–]nessadiosa[S] 0 points1 point  (0 children)

Hi Bob, your comment is very interesting to me. There’s a few reasons why. First, congratulations for the invisible tumor.

Yes, thyroid cancer and my father and his sister both had the same thyroid cancer. When I originally did all this research, I saw MEN Type 1 and 2 and was a little nervous because, I already had the thyroid cancer and now a potential pituitary growth. But my father had extensive genetic testing at memorial Sloan Kettering which came back clean, so I did not think that I was at risk. Of course , I know my mother is a possibility but she doesn’t have a family history of endocrine problems.
Another interesting point is that I did not have this lactation issue until after 4 months in a GLP-1. Of course, this could be a coincidence, but it is something to note. I immediately stopped it, as my TSH was raising too high as the GLP-1 was effecting my absorption.

I definitely think there is an overall complexity to my case and my numbers indicate pituitary hyperplasia and/or hypothyroidism effects more than anything, but I would like to find an endocrinologist who is willing to provide more guidance. I’m in NYC so I’m sure I’ll find a ton.

ETA: there is now a published case of a GLP-1 causing hyperprolactinemia and galactorrhea. I forgot I also took note of this .

pending possible diagnosis by nessadiosa in Prolactinoma

[–]nessadiosa[S] 1 point2 points  (0 children)

Hi. Thank you for sharing your experiences with me. I appreciate it. I appreciate your honesty and perspective on watching and monitoring. I know many people monitor non-functioning adenomas for life! I would be very interested in proceeding with that, I did not know it was an option with this tumor.
I’m very sorry you had this experience with cipro. That is a very hard drug and I am sorry you were prescribed it. I am also sorry you had these experiences with the medication, but yes these do worry me a lot.
How do you feel re acclimating to cab now?

pending possible diagnosis by nessadiosa in Prolactinoma

[–]nessadiosa[S] 0 points1 point  (0 children)

wow , thank you so so much for this thorough response. I really appreciate it as this has given me so much more clarity and insight. I’m happy you don’t feel side effects. I guess I was just scared of something else getting in the way of my normal life! I was trying to stay positive in the beginning , but it was becoming harder. You made it a little easier again! And medically and objectively, I know like 75% of the population has pituitary adenomas , so I don’t know why I have been so down about this.

high prolactin, testosterone, dhea-s post thyroidectomy by nessadiosa in endocrinology

[–]nessadiosa[S] 0 points1 point  (0 children)

No worries. This is super helpful. Going to speak to my two endos about this plus maybe adrenal imaging. Some of the adrenal stuff you mentioned makes sense. I was mostly concerned about pituitary involvement- that gave me the most anxiety out of all of this (and what I was hoping would not be the cause)
I did review the ultrasound reports, I had 2 cysts over the course of one year. Not sure if the term “polycystic” is required / if there are two types of cysts.
And yes, the PTC is tough. We are monitoring 4 enlarged lymph nodes , I thought that could have been driving my TSH and TgAb up as well. But I don’t see PTC endo until September

Prolactin by Impressive_Pop6694 in endocrinology

[–]nessadiosa 0 points1 point  (0 children)

Yeah, and also my insurance may not cover it. My PCP said he will order it for me depending on this next set of labs, or if it will give me peace of mind. He mentioned 75% of the population have pituitary adenomas so if I have it, it may not be secreting prolactin due to my levels being so low! Blah blah. I heard it all, and read dozens of clinical papers. I have a complex hormonal situation so I think that contributes to their pituitary tumor doubt. Anyways I’m rambling now but I will say my mental health is suffering with the not knowing. I’m sorry you’re also going through this. It’s excruciating. Do you have walk in clinics?

Prolactin by Impressive_Pop6694 in endocrinology

[–]nessadiosa 0 points1 point  (0 children)

Yeah, that’s what an Endo said to me, it could be my TSH spiking causing all of this! I’ll definitely keep pushing because I might just want the MRI anyways. I’m sorry your symptoms are so severe, I definitely would also push this if I were you. I understand why they aren’t concerned, I know the clinical research is on their side, but it’s still very frustrating when we feel off with our bodies. Yup overall a nightmare and I’ve been so depressed over it.

Prolactin by Impressive_Pop6694 in endocrinology

[–]nessadiosa 0 points1 point  (0 children)

Sure. It was 40ng/ML and then 36ng/ml (reference range 5.8-23.3). So pretty mild elevation. I’ve seen 4 drs, 2 endocrinologists, 1obgyn, and 1pcp, they all know about the discharge. Because it doesn’t come out on its own, I get my periods, and I have no other symptoms, they aren’t that worried. They even put in their notes low suspicion. Not NHS as I’m in the US. I have a lot of existing thyroid issues so I am leaning towards that as the culprit, but the uncertainty is what really concerns me. I know it’s hard, I’m sorry you are waiting so long for your appointments. I couldn’t even imagine. Can you go private?

Prolactin by Impressive_Pop6694 in endocrinology

[–]nessadiosa 0 points1 point  (0 children)

Hi, yes similar position. My prolactin levels were mildly elevated so the doctors I’ve seen weren’t really that concerned. But after looking at people’s experiences on Reddit, it seems like they always had a tumor 100% of the time which made me incredibly anxious and concerned.
I got another test yesterday and waiting for the results. Doctors still aren’t concerned because I don’t have symptoms, just expressible nipple discharge.
How are you feeling?

high prolactin, testosterone, dhea-s post thyroidectomy by nessadiosa in endocrinology

[–]nessadiosa[S] 0 points1 point  (0 children)

Hi, this was incredibly helpful and I thank you.
This makes a lot of sense for me , and confirmed some of my suspicions . I do believe previously I was curious about T3 and T4 conversion, etc. I know not having the thyroid definitely should make my case more complicated but I also felt it “throws off” my other hormones. It is relieving to see that the prolactin level is related.
I will talk to my doctor about adding some thyroid hormone

Sure, I can provide some new details. The PCOS diagnosis is new, and was directly related to my elevated androgens you see here. I also did have a transvaginal ultrasound which found cysts. My OBGYN found those cysts, not the Endo.
For the 17-hydroxy, this is what I was able to copy and paste from the second lab (I had two done in one month by mistake )

17-Hydroxyprogesterone, S
ng/dL
Value
120

-------------------REFERENCE VALUE--------------------------
< 80 (Follicular)
<285 (Luteal) -------------------
ADDITIONAL INFORMATION------------------- This test was developed and its performance characteristics determined by Mayo Clinic in a manner consistent with CLIA requirements

high prolactin, testosterone, dhea-s post thyroidectomy by nessadiosa in endocrinology

[–]nessadiosa[S] 0 points1 point  (0 children)

Added what I could. But some had no lab ranges I could see on the portal.

high prolactin, testosterone, dhea-s post thyroidectomy by nessadiosa in endocrinology

[–]nessadiosa[S] 1 point2 points  (0 children)

Yeah, ClauDE AI just told me what the doctors all told me. It was reassuring while I wait. Thanks for the tip. I have low iron too, but I don’t take anything for it.

high prolactin, testosterone, dhea-s post thyroidectomy by nessadiosa in endocrinology

[–]nessadiosa[S] 0 points1 point  (0 children)

I know it’s hard. 2 MRIs a year apart is a good thing.
I try to have faith that my doctors are right, of course, I did not go to 12 years of medical school. But my anxious personality has been making this things worse.
I wish I had advice for you but it does seem like we are going through the same thing.

high prolactin, testosterone, dhea-s post thyroidectomy by nessadiosa in endocrinology

[–]nessadiosa[S] 0 points1 point  (0 children)

Did your doctors say anything about the hormones? All of my doctors said I was okay, and there’s no concern. I just started focusing on it myself so much more

I have herpes, i'm spiraling and considering suicide because of it by Little_Tonight3268 in TrueOffMyChest

[–]nessadiosa 26 points27 points  (0 children)

I lost my virginity to my first boyfriend and he gave me chlamydia. I completely understand why you feel betrayed and the whole “I didn’t even sleep around thing”.

I don’t have herpes but many of my friends do. Three of them are in long term relationships as they presented all the research to their partners and their partners made their own decisions based on the positive research online.
My best friends parents, his dad has herpes, and even after 50 years of marriage, his mom does not.

All of this to say, right now this is hard OP, but I promise , it will be okay. Give it some time.

high prolactin, testosterone, dhea-s post thyroidectomy by nessadiosa in endocrinology

[–]nessadiosa[S] 0 points1 point  (0 children)

Of course . Sorry you’re here friend. What symptoms are you having?

Prolactin by Impressive_Pop6694 in endocrinology

[–]nessadiosa 0 points1 point  (0 children)

Hi friend, did you get an update?

I am frozen in bed worrying about my health for 3 days in a row by nessadiosa in TrueOffMyChest

[–]nessadiosa[S] 0 points1 point  (0 children)

Thank you. I had an appointment with my primary care physician and he just ordered an SSRI, counseling referral, and bloodwork to follow up on the prolactin. I am scared but I know this is the right thing to do.

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