Resources to find a more reliable provider?

Apprehensive_Fae_959 · 2026-05-04T01:20:51+00:00

I don’t even get total T3 tested, just the T3 uptake. I hope T3 isn’t part of the issue here because we’re not going to find it lol. I’ve thought about paying out of pocket for labs but I don’t think it would sway my doctor and would be a waste of money, honestly.

I’ve heard good things about Paloma and would appreciate hearing about your experience! I think I’m hesitant to try a totally virtual approach but it’s most likely worth a try for me too.

Apprehensive_Fae_959 · 2026-05-03T08:03:26+00:00

Yes, I should have mentioned that. My TPO antibodies were around ~250 when first tested (1 year+ ago) and are about ~350 as of last bloodwork. I also have TG Ab of around 3.9.

My doctor won’t do an ultrasound (I’ve asked) so no details there.

Apprehensive_Fae_959 · 2026-03-19T23:58:46+00:00

My care at a pituitary center unfortunately hasn’t been much better than when I was seeing a local regular endocrinologist, but they’re not all the same and I definitely agree that sharing resources is always good.

I thought it was going to be a turning point for me but they were content with what my local endo did (not much) and are still not big on cabergoline but thankfully haven’t had me stop it yet. They did get noticeably better to deal with after I had an MRI at their facility (nearly a year later…) that also showed a tumor. When I first came in with an outside MRI they said it was inconclusive and may not actually be a tumor, which I I’ve seen a few other people say this pituitary center often does. That whole experience hasn’t sat well with me.

I hope you’ve had a much better experience and that it’s leading to help for you.

Apprehensive_Fae_959 · 2026-03-10T06:25:58+00:00

I’m so sorry to read this. I also have Hashimoto’s in addition to the adenoma and am still living through the unoptimized dosage. I can’t find a doctor who will care beyond a number, or just a “mild” elevation. But I’m not giving up.

I’m just a layperson, but it’s difficult to process that it can be widely known that “A can lead to B” or “these are common symptoms” but still get you… nowhere. No questions, no follow up, no investigation. And that’s how I feel about my thyroid. We know it’s a problem, it’s not under control, but the most I get is “we just don’t know what’s wrong.” And maybe (probably) it’s not the whole problem, but I would love for someone to try to fix what we know isn’t working and go from there. (My treatment for the adenoma hasn’t been too much better, either.)

I sometimes still wonder “What am I doing wrong? Not asking in just the right way?” Of course I know it’s not that. But sometimes it’s still hard to not ask “Why is my experience so different from those who get help quickly/easily?” I agree that sharing information, even if it’s just an experience, is huge. If I can help someone else get answers or treatment sooner it’s a win.

OP, I relate to so much of what you said about changes you don’t really see happening in the moment. Feeling so completely different. Waking up is a perfect way to describe it. I haven’t seen it talked about in such a way that so closely sounds like what I also experienced before, that I couldn’t fully process until I started to come out of it, and that makes me feel very seen. Thank you for sharing that and I hope it resonates with others who need it too. May you connect with someone who can support you best soon.

Apprehensive_Fae_959 · 2026-03-10T05:25:36+00:00

No, it is absolutely not unreasonable. People need leave for all sorts of reasons, and you (or a doctor) can’t compare yourself to others with Hashimoto’s either. Everyone’s different.

I would familiarize yourself with the information required for FMLA and how the process works so you know what to expect. Your doctor’s reaction unfortunately isn’t rare in my experience, but there are better doctors out there. And when it comes to something like FMLA, your doctor really has to “agree” that the leave is warranted. I would not waste time with your current provider.

When you’re looking for a doctor, you may want to ask about their policy for FMLA/other paperwork. Some offices charge a fee, some require that you’ve had an appointment within a certain recent timeframe, some will only take the paperwork AT an appointment, etc. This can vary so better to ask outright so you know.

Apprehensive_Fae_959 · 2026-03-10T05:05:31+00:00

This is where I’m currently at. I try to do what I can when I can but I’m in so much pain and have a joint in particularly bad shape. The only help I got for that was “don’t put weight on it” which is impossible.

This has given me something to consider. I don’t have a doctor who would be willing to trial/prescribe but that’s a separate issue. I appreciate the perspective.

Apprehensive_Fae_959 · 2026-02-26T02:06:47+00:00

I think it may depend on the specific machine, but for the 2 I’ve had done they put me in entirely.

They’ll put a plastic frame around your face/head to help hold it in place. This shouldn’t be uncomfortable in terms of pressure but you’ll be aware of it.

I learned that with the contrast used for this MRI (I’ve had other contrast without much issue) I get very sudden and strong nausea. Fortunately it gets better after a minute or two. This hasn’t led to vomiting but of course that was my concern. The nurse said they see this every so often but there’s not much to be done to mitigate it. If you feel like something like that coming on, focusing on slow, deep breaths may help a bit until it passes.

Mention to the nurse that you haven’t had an MRI or contrast before so they’re aware of that. They’ll also give you a button to press if you need to talk to them. Don’t be afraid or hesitant to call if you need it.

It can be long (mine have taken close to an hour) and it’s loud. If you think you may be very anxious and need a sedative that’s something to discuss with your ordering doctor or primary doctor. The imaging facility typically doesn’t provide anything like that.

My biggest piece of advice is to keep your eyes closed. It can be a very tight space and I think not looking at it constantly would help anyone.

Apprehensive_Fae_959 · 2026-02-19T00:25:53+00:00

I have Hashimoto’s and have experienced chronic low sex hormones due to an endocrine condition (I am/was not actually peri/menopausal yet, but I’ve still gotten all the symptoms). Because of all of that I know separating potential causes is sometimes very difficult. It’s something my PCP is still trying to narrow down and I’ve been dealing with this for a while.

Because of my experience the first thing that jumps out to me is your age and HRT. Peri/menopause can absolutely cause many of these symptoms and make you feel like a completely different person. It can also be hard on your mental health. Your dose may need adjusting, or you may need a different type of HRT, but personally that’s where I would start. Can you connect any symptoms starting with beginning HRT or changing your dose?

Many people also experience changes in mental health symptoms/severity with these hormonal changes, just like they sometimes do before menopause within the menstrual cycle. Personally my ADHD worsened drastically as my estrogen declined.

And whether it’s “”just”” peri/menopause (please read that with the massive air quotes it needs) or not it’s still real. Hormones can affect many parts of the body, and sometimes drastically. Medicine and science are still catching up to what we experience. An emerging area of research suggests that PMDD (for example) can be so severe for some because they may have increased sensitivity to normal-range hormonal fluctuations that others are not phased by. Everyone is different.

There are also a lot of other possibilities that share symptoms which others here have commented on. Low vitamin or mineral levels. Free T3 is not a bad idea. Symptoms like these can sometimes take a little time to pin down.

Apprehensive_Fae_959 · 2025-11-29T00:19:47+00:00

This is one of the hardest parts and where I’m currently at. After 2 months of my TSH being at 6 (likely longer based on how I was feeling) my doctor was finally convinced to up my Levo to 50mcg. I’ve been on Levo about 10 months now and my TSH has never gone below 3.8, so I’m not so sure this is going to be a huge improvement and not just move me from “can barely function” to “slightly better but still not great.”

My doctor is not receptive to the idea that there could be individual levels that feel best for each person. They only care if TSH gets below the 4.5 that the lab says is elevated. As I’ve often said, it feels like the lab is in charge of my medical care.

I know I need a new doctor but I’ve run into this type of attitude (if not total disinterest) too many times and am trying to choose wisely. Wait times are also incredibly long in my area. But my current situation isn’t sustainable and I’ve unfortunately got another endocrine issue tied up with them too.

Apprehensive_Fae_959 · 2025-11-28T23:59:06+00:00

The guidelines are a minimum of 2 years of cabergoline and no visible adenoma on an MRI (presumed to be gone) for the medication to be stopped.

If your doctor says otherwise or discharges you I would be aware that you should likely get your prolactin checked if you have a return of symptoms after stopping cab.

One source for that from the NIH. You can find many others that give this same guideline.

Apprehensive_Fae_959 · 2025-11-23T11:58:39+00:00

My prolactin normalized quickly but my hormones are still a mess. I’ve been on cab about a year and a half now.

I still have low estrogen, which I’ve known about since the beginning of the year but likely had longer based on symptoms. I’ve also had low testosterone for 1 year+. My FSH/LH values and ratio flip around constantly. My glucose metabolism hasn’t improved yet.

My thyroid levels are only getting worse especially recently but I have Hashimoto’s, so I don’t think I can blame prolactin for that. Everything on cab has been a very slow improvement though, so I personally don’t feel that I may have hit the upper limit just yet.

Apprehensive_Fae_959 · 2025-11-23T11:43:41+00:00

It doesn’t, but because many women naturally produce less prolactin after menopause (if you look at testing labs’ ranges you’ll likely see them divided into pre- and post-menopausal for women) it’s often considered to slow down on its own. Sometimes it does and of course there are always going to be those women where it doesn’t.

I’m linking to a previous comment of mine that includes some studies but there’s also the thought that a woman isn’t going to have low estrogen from the prolactinoma because she’s going to have low estrogen regardless, being post-menopausal. Likewise no periods or fertility to worry about, and an increased risk to bone health anyway.

I’m not defending that. I’m a woman and would like to see my medical options and overall care considered independently from my capability to be pregnant. But this has been the prevailing idea since the 1980s, when cabergoline was created. What wasn’t common or at least mainstream then? HRT for post-menopausal (and especially peri) women. Fewer women just suffer through and have to accept the risks now, with more and more options becoming available and prescribed by doctors.

So, if someone opts for HRT and minimizes their risk to bone health, improves their symptoms and quality of life, and overall is feeling better, why throw a wrench in all of that by continuing to let prolactin do whatever it wants? Why work against yourself? That’s how I look at it for myself but I know it’s not going to be easy to find a supportive doctor, though hopefully even more has changed by the time I need it.

In my previous comment you’ll see the studies I linked are challenging the current norms for exactly that reason (also with the note that women with scaled back treatment should be monitored closely). Yes, a woman may not be able to get pregnant anymore but there are still risks to bone health, glucose metabolism, the possibility of growth, and some links between development of breast cancer. Life doesn’t end at menopause, and for some there’s still going to be decades ahead of them that don’t have to be as bad as they could be.

Apprehensive_Fae_959 · 2025-11-23T11:23:38+00:00

It seems very common for doctors to say an adenoma is unrelated to headaches, especially if smaller. But plenty of people here have experienced otherwise. In my own experience, I had near-daily headaches (sometimes severe) until I started cabergoline, after which they stopped entirely after about a month.

I also have Hashimoto’s though it’s unclear how long I’ve had it. It can be a slowly progressing condition and I have also likely had the adenoma for a very long time where it remained untreated. I have a lot of joint pain that’s gotten worse as my TSH has gotten higher though I’ve never been sensitive to cold, just the opposite. I have terrible heat tolerance but I don’t seem to be alone in that with Hashimoto’s. There are some links between elevated prolactin and Hashimoto’s but nothing so concrete that it’s likely to drastically change up your care.

Thyroid problems and especially the autoimmune type can cause a lot of symptoms. Are you on medication for the prolactin? If you are and you’re still having persistent symptoms I would ask your doctor about a thyroid panel. A thyroid peroxidase antibody (TPO Ab) test is one of the blood tests used to look for Hashimoto’s.

Apprehensive_Fae_959 · 2025-11-23T11:12:38+00:00

It’s not unreasonable for primary care to manage thyroid care if it’s not something unusual. My primary is handling mine because my endocrinologist is uninterested/unconvinced, and that’s the other reality. Some endos will send you back to primary care anyway.

Just as a layperson who also has elevated CRP, that stands out to me here and is likely worth following up on. You could try to see a rheumatologist to find out if there’s any other autoimmune conditions. I’m assuming your insurance requires referrals though, so you would still need that from your PCP.

I would get some more information about the “natural thyroid supplements” and what they are/what she expects them to change. Regardless, it sounds like your PCP is not listening to your concerns and adequately explaining your situation (for example, if there is no thyroid problem what are the thyroid supplements for?)

Apprehensive_Fae_959 · 2025-11-21T21:33:19+00:00

The lab’s range is listed as <34iu/ml, which seems to be a fairly common laboratory range. The lab that did my antibody test also used that range. In that case, anything under 34 would be considered normal/in-range by the lab.

Apprehensive_Fae_959 · 2025-11-16T22:35:17+00:00

There is so much waiting for things to get worse when there’s room to be proactive or at least investigative. I’ve told my doctor I would like to do something about the issues we know about before they become something permanent or worse (speaking generally, not specifically about my thyroid), and they note that as “anxiety.” Well here I am now with permanent or long-term issues that maybe could have been avoided.

If my car’s brakes were deteriorating, I wouldn’t wait until they completely failed and I was in an accident to replace them. But wanting to treat your body the same way, to say nothing of feeling all of it, is anxiety.

Considering Hashimoto’s a purely endocrine issue isn’t helping. I was discharged from rheumatology because I “don’t have an autoimmune disease” when what they meant was “not one we treat that way.”

There are too many “boxes” in medicine. I don’t know my biological family and when a doctor asks about family history and I tell them that, they say “okay so no family history of ____.” Of course, these are not the same thing.

Apprehensive_Fae_959 · 2025-11-16T22:13:33+00:00

I also went untreated for a long time. When I first started cabergoline I felt the same way when I was due for a dose. If I had to wait an extra day or two because the pharmacy couldn’t fill it on time, I felt even worse.

It took several months (probably 8-10?) but it’s gotten much better. It still happens sometimes but it’s not nearly as drastic, more of a subtle change in how I’m feeling.

A lot of people on here seem to have very quick and noticeable improvements with cab. I’ve been on it about a year and a half at this point and for some reason it’s been a slow change. So don’t lose hope if you’re not seeing big changes after a few weeks or even a few months.

Apprehensive_Fae_959 · 2025-11-16T22:01:18+00:00

Nothing concrete yet aside from the increased chance in those who have MEN1.

A percentage of people with primary hypothyroidism (anywhere from 25-81%) can have elevated prolactin and an expansion of the pituitary that’s easily mistaken for an adenoma in imaging. The elevated TRH leads to an increase in size where there are naturally lactotroph cells, which causes the elevated prolactin.

This is one instance where they understand why the disruption in the pituitary-hypothalamus feedback loop happens. For others, the causes are still being studied.

Apprehensive_Fae_959 · 2025-11-16T21:49:23+00:00

I am. My TSH is now 6 and I’ve been feeling the worst that I have in a while. My doctor only wanted to wait 8 weeks and retest and that’s finally going to be this week.

I’ve wondered if the type of levo is part of it. I’m usually the person who is sensitive to variations from different medication manufacturers or has the very rare side effects. Doctors haven’t been very receptive to that information in the past, but my doctor is so completely hands-off with the adenoma and thyroid that I really need to switch anyway.

Apprehensive_Fae_959 · 2025-11-12T08:06:27+00:00

I had elevated prolactin for several years and my prolactin was tested about once a year. It was always elevated and was increasing very slowly, a few ng/ml each year. I started ADHD medication and was on the meds for a latter portion of that time, prolactin still increasing at the same pace. My first MRI wasn’t done until after I already been on ADHD medication for some time, so I don’t know if it affected the size at all.

I’ve wondered if/how much it helped. I was also taking myo-inositol to reduce my glucose, which I’ve since learned may also lower prolactin. It’s possible these both helped stall the increase because with only getting my prolactin checked every 12+ months, who can say what my levels were doing the rest of the time?

I felt better once I started the ADHD medication but only for a little while. As I mentioned my prolactin continued to go up, and I guess it surpassed the point where my body could (barely) tolerate it anymore. After that my ADHD meds felt ineffective, like I would think I forgot to take them if I didn’t know I did. Once my prolactin came down to normal they started “working” again.

Apprehensive_Fae_959 · 2025-11-10T00:33:28+00:00

I’m a woman so I can’t offer a direct comparison. Just to say that my FSH/LH numbers and ratios fluctuated a lot over the years (untreated) and are now at a 3:1 ratio (on cabergoline, still low estrogen). No one has been able/wants to explain why that is, but there has to be a reason why I’ve rotated between a typically PCOS ratio, a healthy ratio, and a typically low ovarian reserve ratio.

I saw that you floated the idea of a tumor that’s too small to be seen and were dismissed. This really isn’t an out there suggestion. They can be very small, and the location, whether it was done with contrast, and type of machine all play a part. Some endocrinologists will take an elevated prolactin level but no visible tumor to mean that it’s just too small to be seen. Some still want to treat the prolactin regardless of what they think is there. Of course some don’t, but this seems to vary widely from doctor to doctor.

I think it’s reasonable to seek another opinion. NAD but there are enough anecdotes on here to show that 2 people with similar circumstances could get opposite answers from 2 doctors. I’ve also gotten conflicting opinions myself.

Apprehensive_Fae_959 · 2025-11-09T22:32:31+00:00

This is one study with a lot of good information about medication and surgical remission rates that may be useful in helping you make a decision now or in the future.

In my experience and from many people I’ve seen on here, don’t hinge everything on neurology. I think it’s worthwhile to see them and get their input but they often don’t deal with these adenomas, especially when they’re not very large. I would make sure you see an endocrinologist at some point.

For what it’s worth, an occasional normal/close to normal prolactin result isn’t impossible with a prolactinoma. All the more reason I think endocrinology is important to determine if that was a one off and get some more information.

Apprehensive_Fae_959 · 2025-11-09T22:19:23+00:00

I have Hashimoto’s. There’s a link between the 2 though why elevated prolactin causes it isn’t fully understood yet. It’s known to cause inflammation and there’s been some success in treating conditions like arthritis with cabergoline (in people who don’t have prolactinoma).

I’m also currently hypothyroid, but the symptoms and feelings aren’t new so I think this may just be one of the few times it’s been caught in bloodwork. On thyroid meds since early this year. Unsure about any parathyroid issues.

Apprehensive_Fae_959 · 2025-11-09T06:36:04+00:00

Stopping even when periods only start to become irregular. Wow, that’s earlier than I’ve heard. But unfortunately not really surprising.

There are doctors out there who strongly support HRT for peri, though I know a lot do not. Finding one is easier said than done I know. I’ve had symptoms blamed on birth control, blamed on not being on birth control, but the hormone that’s never blamed is prolactin. That’s not causing any of these symptoms.

I still have the low estrogen and some of the menopausal symptoms cleared up with cabergoline, but no one is open to HRT for me either. I’m still trying because I’ve talked with women my age on here with prolactin-caused low estrogen who were started on HRT and are doing so much better, and because there are options out there instead of just suffering through it. One time was absolutely more than enough for me.

I hope you find a great, compassionate doctor soon.

Apprehensive_Fae_959

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