Prolactinoma (Pituitary Tumor) Causing Low T, Host of Other Issues

I found this page after a lot of Googling about my condition and reading this thread. The guy there has exactly the same tumor, just about the same size, and basically all the same test results. But it was left unresolved. I’m not sure what to do, so hoping I could see what y’all have to say.

Basically, I was diagnosed with a 2.5cm x 2.5cm x 1.8cm prolactin-secreting pituitary tumor a month ago and have been on cabergoline. Have only been feeling negative side effects and no benefits (i.e. no losing weight, no increased libido, tons of headaches, etc.) No new test results since then (I get another round at the end of March), but here’s what my panel looks like:

Total T: 187 ng/dL (ref. 250-1100)
Free T: 27.2 pg/dL (35-155)
TSH: 3.73 mIU/L (0.4-4.5, though I’ve heard anything over 2.5 is not good)
DHT: 12 ng/DL (16-79)
DHEA: 507 mcg/dL (85-690)
Globulin: 21 nmol/L (10-50)
FSH: 0.9 mIU/mL (1.6-8.0)
LH: 1.8 mIU/mL (1.5-9.3)
Prolactin: 2928 ng/mL (2-18)
Creatinine: 1.08 mg/dL (0.6-1.35)
T3: 3.2 pg/mL (2.3-4.2)
HGH: 0.1 ng/ML (less than or equal to 7.1 – not sure if 0.1 is something to worry about)
ACTH/plasma: 34 pg/mL (6-50)
Cortisol: 12.4 mcg/dL (4-22)
eGFR: 92 (greater than or equal to 60)
Thyroxine Free: 1.1 ng/dL (0.8-1.8)
IGH-1, ECL: 180 ng/mL (53-331)

I still need to ask for an estradiol test, and T4.

I know it’s open-ended but… what does everyone make for this?


Hi David:

I’m the original poster you reference in the email. The thread you mention is 4 - 5 years old, so I’ve had a lot of progress since then. Your numbers look reasonably similar to mine at the time, so I’ll presume we’re in the same boat.

I’ve been on Cabergoline since diagnosed with the Prolactinoma. Prolactin levels are now within normal ranges and the tumor has shrunk a fair amount (by half I think), but it’s not shrinking anymore. I’ve had no side effects or issues with the Cabergoline, so I’m fine to continue taking it for as long as my endo says I should. My endo has yearly MRIs done and there’s been no appreciable change for two years now. Given the prolactinoma is technically still there (although now fully under control), she’s going to continue to monitor for the foreseeable future.

The testosterone levels were the fight - my endo thought my levels didn’t look TOO bad, and I wasn’t experiencing significant sexual disfunction, so I probably didn’t need TRT. This is where we disagreed - since the reference range for T-testing is for all male age ranges. Your T levels are much higher as a young adult than an old adult, so you should be much closer to the higher end of the range in your 20s and 30s than the bottom end, where you should be in your 60s and 70s.

In the end we agreed to disagree and I sought private, independent advice (I’m in Canada, so I have to pay for that, versus the endo which is covered by our health system) - which was a hormone replacement specialist doctor (one of those full-health, wellness types). I presented my file and he found all three concerns I had in two minutes (two were easy, one was not), and he is exceptionally well trained in this area.

He immediately put me on TRT, due to the long term impacts of not having enough T and what that would do to my system as I aged. He said it would be much more detrimental to my health not being on TRT and having low T over the long term.

I can tell you it’s been a world of difference. I feel substantially better and my life is substantially improved.

I started on injection T twice a week at 0.5ml per injection (1ml per week). That was enough to put me into the top half of the reference range for Total and Free T. I felt fantastic - back to my normal energetic self. I did push it bit higher to try and lose some weight and gain some muscle. That must have been too much - I started feeling anxious and I did have one T test that fell above the top of the reference range, so I was sure to stay with the dosage prescribed.

The only issue I had with the injectible T was after about a year I started getting really bad cystic acne (ie. under the skin, never coming to a head). The overall T levels didn’t change, and neither did the dosage or timing. So we switched me over to Androgel, which I now take everyday, dosage is one pack (5ml).

The cystic acne issue is gone with that change, and I’m still doing very well. I didn’t need to make any other changes and all my other blood test results moved back to normal ranges (I was slightly hypothyroid before starting on the T, and my DHEA levels were high).

Only item I haven’t investigated well enough was my estradiol levels. They are within normal range, but with the injectible T and the cystic acne, I figured they must have been out of whack. Since I’ve switched to Androgel I haven’t had any real issues, so I don’t have a lot of concern.

That’s the summary of my story - if you need any help or commentary from someone who’s been there and done that, just send a reply and I’ll send you my (non-professional!) thoughts.


  • Thonor

I was reading through my old thread and noticed a couple things I should mention as well:

  • Once I started on the T replacement, any depression / mood issues I had vanished almost overnight. It was exceptional news, since I’d not been doing well depression wise after going on Cabergoline. I haven’t had any concerns since and I’ve continued to take the Cabergoline. I think I scaled back the dosage from 4mg / week to 2mg / week a couple years ago when the tumor stopped growing. Prolactin levels are still within normal range after doing that.

  • The only persistent issue I have is LF and FSH levels, which are near zero. That doesn’t surprise me much given I’m on permanent T-replacement. I haven’t noticed any substantial testicular shrinkage. I’m told that I likely am not fertile at the moment. When I want to have kids the endo will prescribe injectible HCG for a period and that should work to correct that issue. I had a HCG stimulation test done when I first started working with the private doctor, and it shot my LH, FSH and T levels up right away, so the pathways all still work - it’s just the feedback loop is keeping my LH and FSH levels suppressed while I’m on the T replacement.

You can see the details of everything up to starting the T-replacement in my original thread. I’ve detailed everything after starting on T-replacement in this thread for you.


  • Thonor

Hey Thonor,

Thanks for all this information! Yeah I’m still early on in the treatment with only a month or so on Cabergoline (and just 1mg/week), so I’m still hopeful my pituitary isn’t damaged and as the tumor shinks, I’ll just be chock-full of naturally-produced testosterone, but I’m obsessive about reading about everyone’s experiences with this thing.

I’m not feeling depression while on Cabergoline–well, nothing more than what can be expected when you learn you have a tumor in your brain–so that’s good, but I have had very low sex drive and very low energy for nearly as long as I can remember, so resolving that is really the positive effect I’m looking forward to to let me know all this is working.

I’m not well-versed in T replacement as far as gel vs. injection vs. HCG stimulation or any of that, so I have tons of questions to ask my endo when I go back and see her at the end of the month with new test results.

Thanks again – it really helps to know I’m not alone in this. So many groups I’ve come across for prolactinomas are full of women, and it’s a very different experience having this for men and for women.


You have multiple impacts on your pituitary.

Typically 0.5 mg cabergoline per week, two split doses of 0.25 gets the job done.
Prolactin should become very low.

They watch to see what happens to LH/FSH. If they do not recover, T will not recover and TRT will be required.

Has your width of peripheral vision become reduced from expected near 180 degrees?

TSH should be close to 1.0
Most common and preventable cause of thyroid problems is not using iodized salt.
Please check overall thyroid function via last paragraph in this post.
Labs should be TSH and free hormones fT3, fT4. fT3 is the active hormone.
Guys with great TT and FT numbers with thyroid problems feel like crap. Thyroid is very critical. Your thyroid number are “normal” and most doctors will think that everything is good, but they do not understand optimal. T3, T4, fT3, fT4 should optimally be near mid-range or a bit higher.

Released in pulses with very short half-life, so low levels mean nothing and hCG should never be tested in this context, but can be in a stimulation test.
hCG causes generation of IGF-1 in the liver and IGF-1 is a better measure of GH status than hGH labs. Is IGF-1=180 good? Depends on age that you have not provided. If you are young, IGF-1=180 is not great. But wait to see how this may change with cabergoline+time.

You have a lot of reading to do and its a steep but manageable learning curve, if you like drinking from a fire hose. Most of your encounters with doctors are probably going to be regrettable. You need to understand things that your doctors do not and passive rarely works.

Please read the stickies found here: About the T Replacement Category - #2 by KSman

  • advice for new guys
  • things that damage your hormones
  • protocol for injections
  • finding a TRT doc
  • Thyroid basics

Evaluate your overall thyroid function by checking oral body temperatures as per the thyroid basics sticky. Thyroid hormone fT3 is what gets the job done and it regulates mitochondrial activity, the source of ATP which is the universal currency of cellular energy. This is part of the body’s temperature control loop. This can get messed up if you are iodine deficient. In many countries, you need to be using iodized salt. Other countries add iodine to dairy or bread.

Hi David:

Sounds like we are indeed in exactly the same boat! I’m hopeful that the Cabergoline will fix the prolactin problem, then you can tackle the low T.

Unfortunately, most men with prolactinomas never find out about it - or it takes years (as in my case) because the tumor has to get big enough to start impairing their vision before they look for it. No doctor bothers to test prolactin levels in men. I felt like crap with no energy and I got lucky when my doctor (not my endo - before she was involved) checked everything on the blood test list and just about skipped over prolactin, but did it just to be safe. Good thing she did! I’ve never had any vision impairment, and since the tumor has shrunk substantially, it doesn’t appear that I ever will.

My advice on the T-replacement is it appears to be personal preference on injectible versus gel. Both put me in the right range for free and total T, but I’ve heard injectible gives more T than gel, because the gel doesn’t 100% absorb and reach your bloodstream. It’s also a matter of if you want to give yourself injections every few days, or throw on some gel each morning out of the shower. I haven’t had any complaints with either other than the cystic acne. From a holistic standpoint, it makes more sense to me to use the gel, because the T dose is consistent every day, as opposed to a higher dose every few days, which will make your levels go up and down in between injections.

Keep posting here and I’ll give you any advice I can. The others here are far more versed in the hormone level interpretation, but it sounds like I’ve had the same experience, but 4 years prior.


More re gels VS injections:

  • Gels and creams are 10% absorbed at best, or close to nil with some thyroid issues.
  • Self injected T is least cost.
  • Injected T is T esters dissolved in oil which absorbs slowly and as absorbed, esters are removed and the result is a time release bio-identical T delivery system.
  • Frequent T injections will yield steadier T levels than gels or creams.
  • Gels and creams have the highest T–>E2 potential, frequent injections the least.
  • Depending on T injection frequency, T levels will change. However T levels can change a lot by the hour with gels and creams. The differences probably are minor to none VS frequent injections.

Thanks KSman for all this – I enjoy drinking through firehoses, so I’m making my way through everything. And to thonor: thanks so much for popping up and writing back – I’m stoked that you’re willing to help me through this. Luckily for me they found it relatively early (I’m 30). I went in for indigestion, mentioned my low sex drive, and the doc ordered the T test alongside the rest of the labs. Voila.

I do have a question for everyone: knowing that I just started Cabergoline at the beginning of February (0.25mg 2x/week), just upped my dose at the end of February (0.5mg 2x/week), and have my next blood work test next week (end of March) – when should I start making a call on if my testosterone will rise naturally vs. automatically going down the TRT route? My endo says I need to wait for the tumor to shrink to possibly see any additional testosterone production naturally from my pituitary/genitals, but I don’t know what that timeline is supposed to look like. Should I be waiting 6 months? A year? Not at all? I’ve read that TRT comes with a risk that your body will stop producing testosterone naturally once you start the therapy and never come back, and I’d rather not be on TRT if I don’t have to.

I have more questions of how this prolactinoma does relate to thyroid issues (because my thyroid panel came back healthy), but I think I need to read more before I ask anything. At this point, I get that they’re related, but I’m not sure how or in what capacity, and what my labs indicate to that extent.

To complete the questionnaire in one of the stickies:

-age: 30
-height: 6’0"
-waist: 33" (about – I wear a size 32 pants, but my belly fat/love handles are not super comfortable, but a size 34 is too big for my waist)
-weight: 185 lbs (used to hover around 160, but have put on 20-25 lbs in the past 10 years)
-describe body and facial hair: some chest hair, full leg hair, full pubes, pit hair, lightly growing facial hair (cannot grow a full beard, no 5 o’clock shadow, takes a week to get a noticeable beard, but I still shave everyday because I like the smooth feel)
-describe where you carry fat and how changed: all in my belly/abdomen, and always has been that way. When I was working out heavily with a trainer, she couldn’t even pinch the calipers on my legs because they had such little fat, but my midsection is all belly. I was always a skinny kid, so I would say this changed in the past 10 years and I started putting on the weight in the abdomen
-health conditions, symptoms [history]: testicular torsion when I was a teenager, fingertip severed when I was 3, neutropenia (low white blood cell count) in my mid-teens, wisdom teeth surgery, dental implant (included a sinus lift)
-Rx and OTC drugs, any hair loss drugs or prostate drugs ever: ibuprofen when I have a headache, pepto bismol/gas-x as needed, have had strep throat medication/z-pack a few times in my life
-lab results with ranges: see first post
-describe diet: huge sweet tooth, but altogether try to stay very healthy with my diet
-describe training: used to train 3-4x/week strength and cardio, but in the past 6 months barely work out at all
-testes ache, ever, with a fever? nope
-how have morning wood and nocturnal erections changed: I can’t remember the last time I’ve consistently had morning wood. I get them probably once a month, if even that

Update time! I just had new bloodwork done on Tuesday. Funny story: my doctor originally ordered just prolactin to be tested, not any other hormone or thyroid levels. Why would she not want to keep track of all the hormones, knowing everything works together? She said I shouldn’t care about all the other levels until prolactin goes down. I told her she’s crazy and needs to order a full thyroid and as much hormones as she could. She still held back on testing estrogen etc., but gave me testosterone and DHT, so that’s a win for now.

Anyway, test came back and they look promising, but there are a few things I still feel I should be concerned about. Here are the results:

  • Prolactin: was 2928; now 16.3 (ref. 2-18) - IN RANGE, but HIGH
  • FSH: was 0.9; now 1.4 (ref. 1.6-8.0) - LOW
  • LH: was 1.8; now 2.7 (ref. 1.5-9.3) - IN RANGE, but LOW
  • Testosterone: was 187; now 475 (ref. 250-1100) - IN RANGE, but LOW
  • Free Testosterone: was 27.2; now 87.4 (ref. 35-155) - IN RANGE, but LOW
  • Bioavailable Testosterone: (didn’t get tested before); now 179.7 (ref. 110-575) - IN RANGE, but LOW
  • DHT: was 12; now 46 (ref. 16-79) - IN RANGE
  • TSH: was 3.16; now 3.09 (ref. 0.4-2.5) - HIGH
  • Total T3: (didn’t get tested before); now 73 (ref. 76-181) - LOW
  • Total T4: (didn’t get tested before); now 6.2 (ref. 4.5-12) - IN RANGE, but LOW
  • Free T4: was 1.1; now 1.3 (ref. 0.8-1.8) - IN RANGE
  • Free T3: was 3.2; (for some reason, Free T3 didn’t get tested) (ref. 2.3-4.2)

So here’s where I’m at… My “testosterone loop” (FSH, LH, T, Free T, DHT) is doing well: testosterone is rebounding, which is great, but 475 still seems low when I hear for a 30 year-old man I should be in the high 600 range. That said, this is my first check-in, my prolactin, while within range, is still on the high end, so it may go up as the tumor shrinks and prolactin gets even lower (hopefully). I haven’t been able to stop thinking about sex lately and have woken up with morning wood consistently for the first time in years, so I’m not complaining here and I’m hopeful.

Where my concern is now is the “thyroid loop” (TSH, T3, T4). Unfortunately, I don’t have consistent numbers for T3 and T4, but my TSH is still fairly high, indicating sub-clinical hypothyroidism (or maybe secondary hypothyroidism?). The numbers aren’t progressing in the same drastic fashion as the testosterone loop numbers, so I’m not sure what that could mean.

I should probably also mention for the past 2 weeks I’ve had incredible amounts of energy and very little appetite. Not sure how my weight has changed–haven’t had access to a scale.

I’m going to see my endocrinologist on Tuesday, who I’ll definitely talk with all this about, but wondering what you all think. Especially with the thyroid business.


Heeey has anybody had a chance to read my updated results? I see the endo tomorrow, and after reading the crazy things other peoples’ docs have said, I want to make sure I’m going in knowing the right things to ask. Thanks in advance, all :slight_smile:

See last paragraph in my prior post to eval overall thyroid.
Something that you need to do and track yourself.

fT3=3.2 should deliver good body temps. If not, rT3 may be blocking.

TSH high, T3, T4 low.
Are you iodine deficient from not using iodized salt? - docs don’t ask

HPTA progressing nicely. You need to be watching TT, FT, LH/FSH and E2 estradiol. Now that prolactin is getting reduced, you need to be watching that E2 does not become the next weak link/

Thanks, @KSman! I forgot to update on my body temps, per your sticky. I did some readings and it seems my waking temp is around 96.5F, and my mid-afternoon/evening temp hovers around 96.7F to 97.2F. Seems low, yes?

I did have my endocrinologist appointment today and brought my notebook full of research to talk about with her. We had a bit of a debate over TSH levels and the quoted 4.5 upper range from the lab vs the 2.5 or even 1.0 that has been proposed in the industry, and while she does agree that my TSH may be a little high based on those (I’m at 3.09), she said it’s not clinical and wouldn’t recommend treatment. That’s when I brought up iodine deficiency proactively, and she asked about my diet, and concluded that I could try iodine supplements or increase my nutritional intake of iodine and see how I felt with regard to my body temperature. Hopefully that will even out my thyroid numbers, as my fT3 and fT4 are looking fine, it’s just TSH that is a bit off (and total T3 and T4 are not as comfortable in the range as I personally would like them to be).

I did bring up rT3, which she said I shouldn’t be concerned about with the TSH and other levels I have. I’m not 100% in agreement with that, and would like it checked. But I think I’ll start with iodine supplements and see how that affects me before diving into rT3.

On the other side, my sex loop numbers are going in the right direction, and she recommended (and I agree) that we’ll re-do the blood labs in 3 months (June) to see if testosterone continues its upward trajectory and prolactin continues downward. I pushed her to also add E2 onto the list of labs, but she said she wanted to do some research on it before ordering the lab. I plan to call her up to get it included in the June labs when she’s had time to read up. I should be looking at the ratio between E2 and T to make sure they’re not too out of whack, correct? I’m not entirely sure what I’m looking for with regard to that.

MRI will come in June as well to make sure the tumor is physically shrinking.

Overall, good things! Sex hormones are going in the right direction, and I feel empowered to conquer my thyroid numbers with a bit of iodine and possibly additional tests in the next few months :slight_smile:


Not sure if results are to be expected from 7X.66 = 42.6mg. Most experience here is larger dosing.

Have you seen someone else hit 98.6F with that thermometer to have confidence in it?

As your fT3 was 3.2, with low body temperatures, we suspect that rT3 is interfering/blocking T3 to some extent at T3 receptors. And this leads to considerations of stress and adrenal fatigue.

Have you looked for references to these in the thyroid basics sticky?
adrenal fatigue
Wilson’s Book?

With adrenal fatigue and your fT3=3.2, it makes some sense that iodine replenishment would be resisted to some extent. While that is assumed, low T4 [total] may be suggesting iodine deficiency. I did ask about iodized salt in the other post and you did not respond to that, but as you are taking kelp capsules now, I assume that you were not using iodized salt.

Thanks for the response! The thermometer has hit normal temperatures with other people, so I have confidence in it. I’ve been on kelp ~2 weeks now and my temperature hasn’t budged, so perhaps it’s not iodine deficiency.

I’ve read the thyroid basics sticky and Wilson’s book. I brought up with my endo the possibility of adrenal fatigue, rT3, and iodine deficiency. She said 1) checking rT3 will not explain why I feel cold, 2) that I shouldn’t take kelp because it can trigger either hypo- or hyperthyroidism, and 3) that my cortisol is normal to rule out adrenal fatigue. She also does not not agree that my 3.09 TSH reading is high, since the lab says 4.5 is the upper limit, much as she and I have talked about the controversy of average TSH ranges.

She thinks my cold intolerance is not related to my thyroid. I don’t know what to think anymore, but I know that I want to wear t-shirts and not be cold. As I’m typing at my office, my fingers are frigid and I’m wearing a sweater and scarf while others are wearing t-shirts and feeling fine. It’s really frustrating.

My endo recommended I see my PCP and ask about my cold intolerance. I don’t know how that could help, except maybe my PCP would actually order an rT3 test or somehow measure my iodine.

I’m kind of at a loss of what to do :confused:


Your endo sucks. fT3 is exactly why you could be feeling cold with fT3=3.2

When you take iodine, you need selenium to avoid the issues your endo brought up. The biggest source of those problems is the effects of iodine deficiency.

Many docs are guided by belief systems that do not stand up to close examination.

I was pointing out that your IR might have been insufficient.

Please get rT3 tested.

I assume that you are not taking a statin drug that could lower CoQ10 or otherwise have a CoQ10 deficiency that would reduce mitochondrial response to whatever fT3 that is getting past rT3.

Your doc will test rT3 or not?

In USA in most States, you can order your own labs and pay out of pocket and the costs are very reasonable. - products - blood testing and other companies too.

Cold extremities can involve poor circulation as well.

You’re telling me! I like her, but I don’t get why she’s not flexible enough to understand what I’m saying to her.

I take selenium in a multivitamin along with my iodine. Is she right that if iodine is not my problem that I could be risking hypo- or hyperthyroidism by taking kelp? Is there a better way to check my iodine that could clarify if I do or do not have a deficiency.

Not taking a statin drug, no.

My doctor has told me she doesn’t want to test rT3 (or E2 for that matter, and she didn’t order fT3 last time), but I feel like I might need to either demand it or get those three things (rT3, fT3, and E2) tested myself without her order.

How would I know if poor circulation is the culprit?

Poor[er] circulation might be contributing to cold hands when core body temps are low. If you have sweaty hands, that will make things worse. I used to have sweaty hands when young and when I worked with oak, it would get black where I touched it. Always felt cold easily then as well. No idea what was going on.

When iodized salt was introduced circa 1922 and other dates in other parts of the world, goiters and metal retardation were been eliminated, however increased rates of thyroid auto-immune disease and hyperthyroidism were observed. The first order response was to assign cause and effect and once ‘in print’ the medical community tends to set such things in stone.

But what was really happening was more complex and nuanced. The first thing to bear in mind is that the iodine deficient population had been suffering iodine deficiency for their whole lives and their thyroid glands had suffered the onslaught of high TSH for most of their lives as well.

In this population there would be individual with thyroid nodules caused by time+TSH and they were already technically hyperthyroid. But the thyroid glands and the nodules themselves were iodine starved and the iodine–>thyroid_hormone production was rate limited by low iodine levels. So it does not take much thinking to realize that feeding iodine to those thyroid nodules was going to lead to high thyroid hormone levels. I need to point out that thyroid nodules are sort of genetically modified in that changed gene expression, a local epigenetic change causes this tissue to be autonomous with refers to the fact that the nodules produce thyroid hormone independent of TSH levels. In such cases, ones T4, T3 can be high and TSH–>zero.

So for these “new” hyper thyroid cases, introduction of iodized salt uncovered pre-existing cases. The statistics show increased numbers of newly diagnosed and reported cases of hyperthyroidism.

Normal biochemistry in a normal thyroid produces free radicals that if left unchecked, create inflammation. That inflammation is a contributing factor to thyroid nodules. Higher TSH causes the thyroid to enlarge and that means increased levels of growth factors which may in combination lead to abnormal tissue structures [nodules]. Discussion of irritation, growth factors and inflammation resembles discussion of abnormal tissue generation and cancer genesis. And yes, tissue abnormalities in the thyroid do lead to thyroid cancers.

The above discussion started with hyperthyroidism and the interpretation of increased cases in populations when iodized salt was introduced. The above paragraph sets the stage for discussion of thyroid auto-immune diseases.

Carrying on and expanding the discussion of free radical production in the thyroid; we need to explore the role of selenium. In the thyroid there are enzymes that clean up these normally produced free radicals. When that fails, the free radicals create cellular damage and inflammation. And as expected, components of the immune system come in to clean up the mess. But things can go wrong and the immune system when cleaning up these damaged cells can misinterpret the wreckage as “foreign” and produce anti-bodies which then attack normal thyroid cells and you have an auto-immune disease. So what went wrong? We know that high TSH simply puts the processes that generate the free radicals running at a faster rate. Where are the cleanup enzymes are that are all the more needed? This specific enzyme, like most in the body, have a metal or metal-like atom in the enzymes catalytic reaction site. In this case, it is selenium, an essential trace element. Selenium deficiencies lead to this chain of events. So I always stress the need for selenium in ones supplements and that this is critical with iodine replenishment.

So back to the claims that iodine leads to thyroid auto-immune disease. When an iodine and selenium population has iodized salt introduced, thyroid glands have restored thyroid hormone production and the free radical generation could easily be increased.

And across all of this, when iodine was introduced to population and populations were watched to see the effects and benefits, many thyroid conditions would have been recorded that were previously ignored because there was no interest as this was simply what had always be happening in the population. This is a common problem where increased diagnosis and reporting creates uncertainty. If used to be that cancer deaths were under reported years ago because families and doctors kept secrets and cancer rates on death certificates was under reported. When people became more open about cancer in the last 50 years, there was a huge jump in recorded cancer deaths when the actual death rates were mostly unchanged. As thyroid conditions were studied and documented as thyroid health care and understanding of the biology progress, thyroid case diagnostic rates showed increases that were also deeply affected by increased reporting.

Lets take this back to something else we need to understand. Someone has a healthy thyroid, then the individual decides to use sea salt instead of iodized salt, or someone else in the household makes that choice. Sometimes it is because sea salt, or pink salts, are regarded as natural. Or they purchase non-iodized salt because it is in similar packaging and located on the self beside the iodized salt. TSH goes up and thyroid function goes down, T3, T4 are reduced. Thyroid gets enlarged and lumpy with nodules that start making thyroid hormones and as that progresses, thyroid hormones increase and TSH decreases and then becomes low and one is hyper. I have seen this happen with a woman that cared for her grandmother [GM]. GM’s doctor put her in sodium reduced diet for high blood pressure mitigation. So salt was discontinued and GM later developed the predicable thyroid issues as a result of doctors orders, but if TSH<5.5 that is perfectly acceptable to the larger medical community. Meanwhile this woman was also iodine deficient because of that doctor directive and she learned to not use salt when cooking or at the table. At one point she lost weight and looked great, contrary to her genetic female family traits. Her thyroid hormone levels were high and accelerated her metabolic rate. The two trips to the emergency ward at the hospital, diagnosis, thyroid needle biopsy, radio active iodine uptake and imaging study etc etc. With iodine in her diet she has normalized decently and avoided having her thyroid destroyed with radioactive iodine and a lifetime of thyroid medication. So that is the story-progress line that I keep in mind when considering where someone might be. And in this story above, I need to repeat that all of that was subsequent to a doctor essentially doing harm by denying one’s source of iodine. And I have never had a report of any doctor ever asking about iodine intake and iodized salt. And off the same consequences can follow one’s choice to not use iodized salt, or whatever one’s government source of iodine provides.

A further anecdote illustrating the problems with the medical community setting beliefs in stone instead of in [current] facts. When the woman discussed above had her diagnosis with radioactive iodine to study and image her thyroid, she was directed to avoid sources of iodine so her thyroid would not be iodine saturated then allowing her thyroid to take up the radioactive iodine. She was directed to avoid bread because that has been printed and reprinted over and over again. Iodine used to be added to bread in commercial bakeries as a dough conditioner, not for health reasons. As some point some doctors started to object saying that this might be harmful and iodine stopped been used in bread [USA, Canada and others]. So the medical community removed this source of iodine and then medical books kept reprinting that bread needs to be avoided when radioactive iodine is used for diagnostics or thyroid destruction. And with the internet, this will never be corrected. Meanwhile, commercial bakeries, not be outdone, started to use bromine, iodine’s evil twin, as a dough conditioner. Bromine displaces iodine in the body and interferes with thyroid function. Bromine and it compounds are dangerous. Bromine in bread is a consequence of what the doctors did about iodine in bread. Did doctors cry out about bromine? - they do not care.

Updating this just to keep all my records together…

First, thank you KSman for that really in-depth look into thyroid/iodine/etc. Really, really helpful.

First, iodine:
I’ve been taking kelp for about 3 weeks now and my overall body temperature has not increased much. Perhaps marginally (I’m now in the mid-96F rather than the low-96F upon waking, and more often reach mid-97F), but I also started exercising more, so it could possibly be a cause of that. I notice I feel better when exercising regularly, so I’m going to keep that going. Always a good idea.

I did do an iodine patch test on my skin (paint a square of iodine on skin and see how long it takes for my body to absorb it), and it took about 12 hours for my body to absorb the 4" square. I know it’s not super scientific, but I believe that indicates a slight iodine deficiency, so I’m going to keep taking the kelp and see if it just needs more time. Thoughts?

Next, tests:
I got her to agree to add the thyroid antibody panel to the blood tests I’m going to have done at the end of May. She said she wants to do more reading on the benefits of testing E2 and androstenedione before ordering the tests, and she’s still holding firm that rT3 won’t tell us much. I plan to push her more on E2/androstenedione/rT3 over the next couple of weeks before I go into the lab, so I can have more data.

Does anyone know any resources I can read/send her that highlight the benefit of testing those three things with regard to my condition? I believe things are going in the right direction (i.e. I have more energy and cannot stop thinking about sex), but I want to have the data in hand to be sure (I’m a science kind of guy).

Last, what happens next:
For now, I’m just going to keep taking kelp, monitoring my temperatures, and pushing my endo to order additional tests. I go in to get my blood drawn on 5/26 for a 6/6 endo appointment, where hopefully I’ll see some good results.

Thank you again everyone reading this and helping out (especially @KSman!!). You don’t know how valuable this forum has been for me.

How much iodine do you think you are getting from kelp?
You also need selenium, deficiency can be dangerous.

With caber, the processes that reduce the adinoma size will take time.

Body temps say fT3 low.

With low FT, less FT–>E2 should show lower E2 unless liver not clearing E2.