19 yr old functioning poorly for years

[Anne Marie]

I just read the recent posts by 18 year old Mike and find myself in a similar boat searchingy for answers for my 19 yr old son who is about to take a medical leave from college.

His issues have been in going for many years. For a start, he started going gray at age 8 and it's quite noticeable now at 19. His hair wirey and looks unhealthy. At age 12.5 severe depression hit along with central weight gain especially in the breasts. He had been a skinny, active kid who ate well prior to this. At 14.5 he saw an endo because of delayed puberty. It was a horrid experience. He was fat shamed and we left the office with my son in tears. Tests were run and came back normal, I was only told to start Vit D. Turns out very little was tested (only prolactin, thryroid and D). Thryoid (T4) was out of range low but we were not told. Genetic testing ruled out Klinefelters.

We spent four years attempting to solve anxiety/depression with meds but that made things worse. Eventually neurofeedback helped with these issues. My son hasn't been on any meds in three years. He also doesn't drink or use drugs.

An inability to complete work and wake up for school was an ongoing issue since age 12. It made little sense. My son loves to learn, has a high IQ and skipped a grade back in his younger days when he was a straight A kid. The As turned into Fs. He would be up all night and unrousable in the morning. He blamed himself for his failures but we could not figure out what was going on. All the while he kept gaining lots of weight and had poor life quality - although somehow he managed to captain the his high school varsity tennis team. He doesn't even play tennis now, he's no longer active at all.

A resent visit to a wholistic doctor uncovered lots of issues. She ran over 50 labs. Cholesterol, blood sugar, blood pressure, kidneys, minerals (except Anon Gap) were all fine. But hormones revealed big issues.

We are now working with an endo that denies there is anything to treat!!! Fortunatly he is doing more testing. A pituitary MRI is scheduled for next week and we are still awaiting results. from a 24 hr urine cortisol and a thyroid antibody test.

December labs:
Test total: 149 L (348-1197)
Test free: 3.7 L (5-21)
% test free: 2.48 (1.5-4.2%)

TSH: 6.18 H (.27-4.2)
T4 free: 1.2. (.9- 1.8)
T3 free: 4.4 H (2.3-4.2)

Vit D: 9.8 L (32-100)
Estradiol: 32 (8-43)
IGF1: 117 L (140-463)
LH: 5.4 (1.7-8.6)
FSH - never tested
DHEA: 469.9 H (115.3-459.6)

White blood count 12.3 H (4.0-11.0)
Anion Gap 17 H (8-16)

Labs tested this week:
Test total: 144 L (348-1197)
Test free: awaiting result
THS: 6.9 H (.27-4.2)
T4 free: 1.1 (.9-1.8)
ACTH: 37.4 (7.2-63.3)
Anti TPO: awaiting result
Prolactin: 10.7 (4-15.2)
24 hr urine cortisol: awaiting result
Pituitary MRI: awaiting result

These are my questions:
1 We need a new doctor. One who can treat this with great expertise. We are absolutely willing to travel anywhere and pay our of pocket. Where would you go if these were your labs?

2 Any idea what is going on here? I can't figure out if this is primary or secondary hypogonadism and I'm finding his thyroid tests confusing. Especially the high T3. We are looking for Cushings too.

3 Are there others here with IGF1 or DHEAs out of range? Is there a link between testosterone and low IGF1? I know that could be a pituitary problem but other pituitary hormones are testing normal.

4 I though his estrodiol was fine because it's in the normal range but I'm wondering if it's far too high given his seriously low testosterone. Thoughts?

Thank you so very much for any incite. This amazing kid has been trying to push though life as best he can. We could see something wasn't right but years of searching for answers left us at a loss. I thought endocrine issues were ruled out when he was 14. Turns out that wasn't the case. We just received a letter from the wholistic doctor advocating to his college forva medical leave. We are more than ready, able and willing to figure this out. We just need some direction.

 

[Jason Sypolt]

There are a lot of guys who know more than I do here, but maybe this can help.


With a Total T that low, an MRI is a good idea. I believe 150 is about the threshold for considering a pituitary MRI.


TSH is probably high. In an adult, TSH over 2.5 can indicate underactive thyroid. I'm not sure how that differs for a teen.


I was diagnosed with primary hypogonadism because LH was normal. With secondary, you'll see low LH result and not something near the middle of the range.


My IGF-1 is 173 and I'm 38, but I have a different lab range for my result.


My DHEA is around 500, but I have to supplement to get it that high.


A good doctor who really understands these things is _really_ hard to find. Call Defy Medical and talk to them. Dr. Saya is just the best. They do telemedicine so you can live anywhere in the US and the costs are really reasonable. That's where I get my treatment from and it's where I would get that kind of treatment for any of my kids if it were needed.

 

[Anne Marie]

Just realized I typed THS not TSH. Yes, his TSH is testing high, it was 6.9 his week. We also just got the Anti TPO result yesterday, that was negative (<6).

So extremely low T (144 now) and normal LH 5.4 (1.7-8.6) and normal prolactin 10.7 (4-15.2) and estrodiol 32 (8-43) would be PRMARY hypogonadism?

So thyroid would be out because of the hypogonadism correct?

Does IGF1 also end up low with primary hypogonadism?

 

[Vince]

Jason makes some good points, your son is so young. You really need a expert, having a consultation with Dr Saya may be a good starting point. If Dr Saya can help that would be great, if not hopefully he can point you in the right direction. Nelson Vergel also offers consultations, as we all know he's also very knowledgeable.

 

[Jason Sypolt]

I'm not sure I would rule out thyroid entirely because even though T3/T4 don't look bad, TSH is pretty high. That may be an additional issue that is the result of the other problems though. But it does look like primary to me based on what you posted since there is normal LH. Primary hypogonadism can be caused by things like infection, trauma to the brain or testicles, genetic conditions, cancer, or in my case "unknown'. It's basically testicular failure whereas secondary means that the right 'signals' are not getting to the testicles to produce testosterone. You are right though. His testosterone is very, very low, and that is definitely not normal.

You've come to the right place to ask. This forum is based on actual science and data where some are not. Most of us deal with adults though and because your son can still be going through puberty that can complicate things. There is a banner for Defy on the right side of most pages of this site. They should be open today (Saturday 9a-2p Eastern) for a while and you can at least talk to someone to get some info to decide how you want to proceed. Several members here are treated there, and like I said earlier, I would take my kids there. It's hard enough to go through as an adult so for a kid, you need someone who isn't going to mess around and who will recognize that there are problems and will help.

 

[Anne Marie]

Thanks for these sensitive replies. He is young and has been suffering for a while. We suspected endocrine issues since he was 14 but the two endocrinologist he has seen have been terrible. His current labs clearly indicate real problems in need of treatment but I really need to find a doctor who can figure this out properly. I will call Defy.

FYI, the banner ad for Defy is currently compromised. It is not directing to the correct site. I found it directly but the banner ad needs to be fixed

 

[Jason Sypolt]

You're welcome. You both should read the stickies at the top of the basics forum. There is a lot to digest, but it's very good information. If it is hypogonadism then it's a life-long treatment and knowing as much about it as you can is essential to success. It's also not a quick process to fix these problems as you will read in the sticky posts, but being under the care of a good doctor makes a huge difference.

I'll ask Nelson about the banner ad.

 

[Will Brink]

These are my questions:
1 We need a new doctor. One who can treat this with great expertise. We are absolutely willing to travel anywhere and pay our of pocket. Where would you go if these were your labs?

You'll find a number of docs, etc here who have experience and or can refer you to those who do. That you're willing to travel is a great thing as you have found the hard way, few docs have a clue here and or willing to treat it sadly. No 19 year old kid should have to suffer like that.

2 Any idea what is going on here? I can't figure out if this is primary or secondary hypogonadism and I'm finding his thyroid tests confusing. Especially the high T3. We are looking for Cushings too.

At his age with those numbers, good idea to rule out as best you can by process of elimination as you are.

3 Are there others here with IGF1 or DHEAs out of range? Is there a link between testosterone and low IGF1? I know that could be a pituitary problem but other pituitary hormones are testing normal.

There is an indirect link and raising T often raises IGF-1. I have seen that effect many times. I not sure what the specific mechanism is of that effect.

4 I though his estrodiol was fine because it's in the normal range but I'm wondering if it's far too high given his seriously low testosterone. Thoughts?

For his age and those T levels, a tad on the high side and may be a function of his bodyfat levels and other factors. It may come down naturally once other issues are addressed. If T is corrected, he feels better and gets some exercise, etc, and the bodyfat drops, E2 may correct itself.

Thank you so very much for any incite. This amazing kid has been trying to push though life as best he can. We could see something wasn't right but years of searching for answers left us at a loss. I thought endocrine issues were ruled out when he was 14. Turns out that wasn't the case. We just received a letter from the wholistic doctor advocating to his college forva medical leave. We are more than ready, able and willing to figure this out. We just need some direction.

I don't mean to throw all endocrinologists under the bus, but I have found them to be consistently the most disappointing docs I have had experience with. I'm not sure what that's the case.

 

[Vettester Chris]

Anne, thank you for taking the time to post such a detailed post pertaining to your son's situation. I can't imagine how difficult it must be when this should be some of the best, outgoing times of his life!

There's probably a myriad of possibilities and talking points to cover everything. I'll comment on a few of the things that standout to me ...

His White Cell count is a bit elevated. Has anything been determined on this? Sometimes it's just due to a virus passing through, infection, or something fairly simple (?) Just want to make sure there is an awareness with your medical team? With what you've presented, I would think some additional metabolic labs would be warranted (?)

NO, the thyroid part is not normal. Free T4 is hanging on the low end of the reference range, Free T3 is over the top. There's a few things to try and identify ...

Possibility 1) The thyroid gland is actually working properly, BUT something is causing the pituitary gland to release excess TSH? This could be the case if some type of adenoma /tumor in the region.?? These can & do happen to anyone, but more times than not they tend to be benign and manageable.

Possibility 2) The thyroid gland is NOT working properly, whereas Free T3 is pooling and not getting to the cells, and T4 is converting excessively to Reverse T3, which is keeping the T4/ FT4 level on the lower end of the reference range?? I would think that the the high TSH demand would be triggered if both T4 and "T3" were low, but possibly T4 is doing it by itself in the 20% to 25% of reference range?? There's still an autoimmune possibility to explore, noted below ...

So, there's ways to rule certain things in or out, or at least to get one step closer to some solutions ... 1) MRI of the anterior pituitary would take care of that adenoma stuff. 2) More labs needed for the other talking points ... Your physician missed a few labs that could tell us volumes with the thyroid ... Reverse T3 as mentioned above. With this lab (RT3), a comparison ratio to FT3 can be established and it would provide a good indication if his FT3 is pooling. Also, on the antibodies, he NEEDS a TgAb antibody, which will check autoimmune at the protein level. Both TPO & TgAb are of equal importance when looking at autoimmune disorders with the thyroid gland!

To conclude for now, I really want to see how his 24 hour cortisol results turnout. His elevated DHEA is one key marker that things are not where they should be in Adrenalville. The thyroid productivity is DIRECTLY tied into the well being of the adrenals. If the adrenals are not working adequately with cortisol production, then T3 won't adequately get to the cells (thus, T3 Pooling occurs)! Unlike testosterone, thyroid hormone is dependent on several things to do its job, e.g., cortisol, iron/ferritin, some of the electrolytes, and even D3 plays a key role.

I fully agree that it would be a really good thing to at least have a discussion with Dr. Saya and/or another physician that specializes in hormonal treatment (and not one of those PCP endocrine that still work with T3 index and uptake labs)!!. A4M Certification Doctors are also an avenue to explore.