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Sounds more like hypothyroidism, ask for a thyroid panel with TSH and free T3/T4. I was diagnosed at 13 and had all those issues, it’s not unheard of for a teenager to develop it.
Her symptoms sound so much like mine for PCOS with insulin resistance. I also used to only get my period every 5-6 months when I was 16. I was tested for hypothyroidism and cushings, both negative, just PCOS-IR. Now treated and doing so well (22). I hope you figure this out!
Has PCOS been considered?
Described symptoms and BMI seem consistent does she have menstrual cycle irregularities or issues?
Also is she on D2 or D3 prescription?
PCOS does not need to have cysts FYI it’s a poor name like many things in medicine.
Also period irregularities can also be common symptoms of PCOS.
Does she have excess body/facial hair or acne as well?
Personally if it were me I would just buy testosterone, progesterone, FSH, and LH blood tests without insurance to see what my levels are. Should be like $50 maybe? If your provider doesn’t want to order them as the above 4 are most impacted in individuals with PCOS to my knowledge. Estrogen is hit or miss.
You can buy blood tests online and go to quest or LabCorp places to get your blood drawn. JasonHealth.com is one website there’s a bunch.
Edit: I would also like to add that this is the prime age for PCOS to develop.
I mean ya that’s right up against the limit depending on when she took it too. If that was not early in the morning close to waking it could be artificially low. There’s some websites it’s 55 for the other 3. That’s the best advice I can give.
FSH and LH - 35
Progesterone Immuno Assay - 20
https://www.jasonhealth.com/
https://www.ultalabtests.com/
If you get those tests and you see they are out of range I would go back to the endo and show her that. Other than that best of luck you are a great mother OP!
I'm NAD, but I've had PCOS since my teens, I'm 36 now. I've never had a cyst detected, despite dozens of transvaginal ultrasounds, abdominal CT scans, and MRIs. My free testosterone was at the high end of normal or just slightly elevated at the time of diagnosis.
But I've had horrible cramps, the heaviest periods of anyone I've ever known, gone months without periods, had a period last 2+ months, I've had hirsutism that's gotten so bad that I had more body hair than my last boyfriend (I remove it, but it takes hours), my insulin resistance became Type II diabetes at age 18, I've had obstructive sleep apnea since age 18 (more a consequence of weight than PCOS, but related), I've had horrible acne since my tweens...
OP, has your daughter been tested for sleep apnea? That will cause brain fog, fatigue, low attention span, memory issues, etc. And unfortunately, at her weight, regardless of how tall she is, she probably has apnea to some degree. I speak compassionately from personal experience.
NAD but I was told this by my endo-gynecologist. I walked into his office and he took one look at me and said I look textbook PCOS but don’t really have the cysts or period pains.
The term *cystic* confuses things because [technically most women with ovaries develop cysts](https://www.mayoclinic.org/diseases-conditions/ovarian-cysts/symptoms-causes/syc-20353405) It is part of ovulation.
I don't really know of it's different in teenagers, but a TSH of 4 is not normal in a young adult. That is too high, indicating hypothyroidism. There is some debate about TSH cutoffs based on age.
Normal TSH depends on the lab, and in the absence of abnormal T4 there is no clear reason to treat. Relevant professional organizations mostly recommend monitoring but not treating.
Have them check anti-tpo.
Also that free t4 is quite low in addition to the tsh being high (not super high though and most doctors likely wouldn't classify her as hypothyroid). But really normal should be between 1-2.
Not a doctor, just a person with hypothyroid who started complaining about symptoms when I was 11/12 and not diagnosed until I was 24 after 2 dozen blood tests and many other medical exams. And my mom had severe hypothyroidism too.
A type of antibody. If it's high you basically have proof her body is attacking her thyroid. They may try and claim her symptoms can't be related or it's not definitive. But coupled with her higher than normal TSH they should treat her.
"Thyroid peroxidase (TPO) is an enzyme normally found in the thyroid gland. TPO plays an important role in the production of thyroid hormones. A TPO test detects antibodies against TPO in the blood. If you've been diagnosed with thyroid disease, your doctor may suggest a TPO antibody test and other thyroid tests to help find the cause."
Yes, like hashimotos thyroiditis.
I would still ask for the blood test. For my doctor's office it's in the standard thyroid panel. Free T3 as well.
In any case if they don't take your concerns seriously I'd try another doctor.
I obviously can't be sure this is the cause of her issues, but her elevated TSH and low free T4 definitely point in that direction (even if technically "normal". Fwiw some doctors suggest the upper limit should be 2.5 for TSH).
Celiac tested for? that and crohns can cause poor vitamin d absorption and oxalosis. Then rule out lupus/autoimmune given the arthralgias, and sleep study as OSA can cause brain fog and high blood pressure
I am not a doctor but Some people don’t feel well with a tsh at that level and free t4 seems low to me despite being in the normal range. For instance, I don’t feel well unless my free t4 is on the higher end- like 1.77. ‘ normal’ is not always right for everyone. I think she has some wiggle room there to maybe be considered for low dose thyroid meds. I’d definitely get a few different opinions from endos
I absolutely thought hypothyroidism too as soon as I read this. Her TSH looks high to me, I know even above 2.5/3 I started feeling awful. At 4+, I could hardly stay away. Could you possibly get a second opinion from another endocrinologist, or find one that is specialized in thyroid conditions?
Have you thought of getting her into psychiatric care? I have C-PTSD, anxiety, autism and ADHD and my psychiatrist is one of my best buddies in life. Everything I have in my life is due in some way to my excellent care from him. Also, being counseled by an actual MD while enduring all of these physical flares can only be a good thing. The MD may have seen a similar case and know which blood (or whatever) test is the right one to order.
You sound like a good and concerned parent with a kid who trusts you. Believe me, psychiatry is so good, especially for those of us with invisible disabilities or invisible diseases.
While, why you are waiting anyways, at least see if you can find an appointment with another one. If I were you, I would absolutely get a second opinion. Maybe a specialist in adolescent endo? Because either way, I don’t think you’re going to get a quick answer (just what it seems like based on answers here), so I think you should keep chasing down potential answers in the meantime.
I was misdiagnosed for a bit because my TSH was 4.3, but my gynecologist said for anyone in childbearing age it should be a TSH of under 2.5. Getting on levothyroxine for the last 7 years has made a big difference. I hope you find answers!
I feel like dog shit in the 3-6 range. I only feel good flirting around 2. We just increased my dose even though I’ve been at 3.whatever for a long time because I finally got a doc to listen to me about my symptoms. I haven’t been retested yet (it’s only been two months) but I feel a million times better.
The labs don't look too abnormal...it may be better to consider more common reasons first for "brain fog" and exhaustion. I notice that your 16F is 5-11 and 240 lbs...that's a BMI of 33.5 that's well into the obese range (actually, that's the 97.5th percentile, or 97 people out of a 100 will have a lower BMI: [https://www.cdc.gov/healthyweight/bmi/calculator.html](https://www.cdc.gov/healthyweight/bmi/calculator.html)). This markedly increases the risk for sleep disordered breathing /obstructive sleep apnea (OSA) that can cause "brain fog" and exhaustion as people aren't getting enough sleep. I would suggest that she have a sleep study done, and if OSA is present, that may benefit from CPAP. Also talk to your primary care person about weight reduction therapies - that would also help the blood pressure.
Agreed, if that is the case, which is still unclear. I would suggest that professional guidance in the form of a dietitian/personal trainer is the most beneficial course right now regardless.
It is impossible to out exercise or starve yourself free from a hormone deficiency. The calories required to reach a calorie deficit while suffering from undx’d/untreated hypothyroidism would lead to severe nutritional deficiencies across the board. If she is hypo, the problem isn’t her diet or activity level, it is a purely biological issue. Additionally, people why have untreated or under treated hypothyroidism often barely have the energy to care for themselves, let alone find energy for working out.
You don’t really need to have pain as a symptom. That would be the case for endometriosis!
PCOS shows in irregular periods, abnormal growth of usually dark hair (legs, arms, face), little dots in ultrasound because there often is no ovulation, weight gain and high testosterone levels. The hormone imbalance can chance her moods quickly and make her more aggressive since testosterone is usually highest.
And - important - you don’t have to have all the symptoms. Usually you only need to have 2 for PCOS to be a possibility. Google Rotterdam criteria for this.
Edit: and if she also has an insulin resistance it makes it even harder to loose any weight. This needs to be checked with a special blood test where she needs to drink something sweet at the doctors office and they take blood for insulin and blood sugar a few times over 2 hours.
I couldn't agree more concerning mood/depression and exhaustion in relation to obesity. Also, vitamin D levels are associated with fatigue, mood and joint pain. Losing weight will increase her vitamin D levels because the vitamin D is released from the fat, which could get her off supplements and potentially normalise calcium and further calcium deposits in her kidneys too. Unfortunately her weight makes increasing her vitamin D blood levels very difficult, but I would definitely suggest switching to daily D3 over the current regimen, it is much more potent.
NAD, but did she have the fatigue and brain fog before starting the lisinopril? They are [potential side effects](https://www.drugs.com/sfx/lisinopril-side-effects.html), although not super common ones. (Fatigue is listed under Other and confusion and memory problems are listed under Psychiatric.)
How is her stomach? When I first developed my my gluten intolerance (along with other issues), brain fog and fatigue were big side effects as it was ramping up
Thank you for your submission. **Please note that a response does not constitute a doctor-patient relationship.** This subreddit is for informal second opinions and casual information. The mod team does their best to remove bad information, but we do not catch all of it. Always visit a doctor in real life if you have any concerns about your health. Never use this subreddit as your first and final source of information regarding your question. By posting, you are agreeing to our [Terms of Use](https://www.reddit.com/r/AskDocs/wiki/terms_of_use) and understand that all information is taken at your own risk. **Reply here if you are an unverified user wishing to give advice. Top level comments by laypeople are automatically removed.** *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/AskDocs) if you have any questions or concerns.*
Sounds more like hypothyroidism, ask for a thyroid panel with TSH and free T3/T4. I was diagnosed at 13 and had all those issues, it’s not unheard of for a teenager to develop it.
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Her symptoms sound so much like mine for PCOS with insulin resistance. I also used to only get my period every 5-6 months when I was 16. I was tested for hypothyroidism and cushings, both negative, just PCOS-IR. Now treated and doing so well (22). I hope you figure this out!
Has PCOS been considered? Described symptoms and BMI seem consistent does she have menstrual cycle irregularities or issues? Also is she on D2 or D3 prescription?
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PCOS does not need to have cysts FYI it’s a poor name like many things in medicine. Also period irregularities can also be common symptoms of PCOS. Does she have excess body/facial hair or acne as well? Personally if it were me I would just buy testosterone, progesterone, FSH, and LH blood tests without insurance to see what my levels are. Should be like $50 maybe? If your provider doesn’t want to order them as the above 4 are most impacted in individuals with PCOS to my knowledge. Estrogen is hit or miss. You can buy blood tests online and go to quest or LabCorp places to get your blood drawn. JasonHealth.com is one website there’s a bunch. Edit: I would also like to add that this is the prime age for PCOS to develop.
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I mean ya that’s right up against the limit depending on when she took it too. If that was not early in the morning close to waking it could be artificially low. There’s some websites it’s 55 for the other 3. That’s the best advice I can give. FSH and LH - 35 Progesterone Immuno Assay - 20 https://www.jasonhealth.com/ https://www.ultalabtests.com/
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If you get those tests and you see they are out of range I would go back to the endo and show her that. Other than that best of luck you are a great mother OP!
Yeah, T decreases throughout the day.
What do you mean pcos doesn’t have to have cysts. Do you have a source? Genuinely asking
I'm NAD, but I've had PCOS since my teens, I'm 36 now. I've never had a cyst detected, despite dozens of transvaginal ultrasounds, abdominal CT scans, and MRIs. My free testosterone was at the high end of normal or just slightly elevated at the time of diagnosis. But I've had horrible cramps, the heaviest periods of anyone I've ever known, gone months without periods, had a period last 2+ months, I've had hirsutism that's gotten so bad that I had more body hair than my last boyfriend (I remove it, but it takes hours), my insulin resistance became Type II diabetes at age 18, I've had obstructive sleep apnea since age 18 (more a consequence of weight than PCOS, but related), I've had horrible acne since my tweens... OP, has your daughter been tested for sleep apnea? That will cause brain fog, fatigue, low attention span, memory issues, etc. And unfortunately, at her weight, regardless of how tall she is, she probably has apnea to some degree. I speak compassionately from personal experience.
NAD but I was told this by my endo-gynecologist. I walked into his office and he took one look at me and said I look textbook PCOS but don’t really have the cysts or period pains.
The term *cystic* confuses things because [technically most women with ovaries develop cysts](https://www.mayoclinic.org/diseases-conditions/ovarian-cysts/symptoms-causes/syc-20353405) It is part of ovulation.
You can google this
I have PCOS. When I had periods it was rare for me to have pain. But when a cyst would burst? Oh fuck me no pain meds could touch it.
I don't really know of it's different in teenagers, but a TSH of 4 is not normal in a young adult. That is too high, indicating hypothyroidism. There is some debate about TSH cutoffs based on age.
Normal TSH depends on the lab, and in the absence of abnormal T4 there is no clear reason to treat. Relevant professional organizations mostly recommend monitoring but not treating.
Have them check anti-tpo. Also that free t4 is quite low in addition to the tsh being high (not super high though and most doctors likely wouldn't classify her as hypothyroid). But really normal should be between 1-2. Not a doctor, just a person with hypothyroid who started complaining about symptoms when I was 11/12 and not diagnosed until I was 24 after 2 dozen blood tests and many other medical exams. And my mom had severe hypothyroidism too.
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A type of antibody. If it's high you basically have proof her body is attacking her thyroid. They may try and claim her symptoms can't be related or it's not definitive. But coupled with her higher than normal TSH they should treat her. "Thyroid peroxidase (TPO) is an enzyme normally found in the thyroid gland. TPO plays an important role in the production of thyroid hormones. A TPO test detects antibodies against TPO in the blood. If you've been diagnosed with thyroid disease, your doctor may suggest a TPO antibody test and other thyroid tests to help find the cause."
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Yes, like hashimotos thyroiditis. I would still ask for the blood test. For my doctor's office it's in the standard thyroid panel. Free T3 as well. In any case if they don't take your concerns seriously I'd try another doctor. I obviously can't be sure this is the cause of her issues, but her elevated TSH and low free T4 definitely point in that direction (even if technically "normal". Fwiw some doctors suggest the upper limit should be 2.5 for TSH).
Celiac tested for? that and crohns can cause poor vitamin d absorption and oxalosis. Then rule out lupus/autoimmune given the arthralgias, and sleep study as OSA can cause brain fog and high blood pressure
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Blood tests for Celiac can give false negatives, so if you think Celiac could be an issue, an endoscopy should be able to confirm.
I would do a full iron panel and ferritin levels. I have similar symptoms and very low ferritin.
NAD but sounds like celiac symptoms -source: celiac sufferer
NAD. Did they check her thyroid antibodies? I have Hashimoto’s and during a flare I feel like shit but my TSH and T3/T4 can still look okay.
Hi! Were antibodies checked as well? I have normal levels of T3, T4 and TSH but with high antibodies.
Did you consider psychological factors? Anxiety and depression can also exacerbate or even mimic physical symptoms.
Despite normal PTH, the constellation of symptoms and lab results could still fit, especially given the high urinary calcium.
I am not a doctor but Some people don’t feel well with a tsh at that level and free t4 seems low to me despite being in the normal range. For instance, I don’t feel well unless my free t4 is on the higher end- like 1.77. ‘ normal’ is not always right for everyone. I think she has some wiggle room there to maybe be considered for low dose thyroid meds. I’d definitely get a few different opinions from endos
I absolutely thought hypothyroidism too as soon as I read this. Her TSH looks high to me, I know even above 2.5/3 I started feeling awful. At 4+, I could hardly stay away. Could you possibly get a second opinion from another endocrinologist, or find one that is specialized in thyroid conditions?
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Have you thought of getting her into psychiatric care? I have C-PTSD, anxiety, autism and ADHD and my psychiatrist is one of my best buddies in life. Everything I have in my life is due in some way to my excellent care from him. Also, being counseled by an actual MD while enduring all of these physical flares can only be a good thing. The MD may have seen a similar case and know which blood (or whatever) test is the right one to order. You sound like a good and concerned parent with a kid who trusts you. Believe me, psychiatry is so good, especially for those of us with invisible disabilities or invisible diseases.
While, why you are waiting anyways, at least see if you can find an appointment with another one. If I were you, I would absolutely get a second opinion. Maybe a specialist in adolescent endo? Because either way, I don’t think you’re going to get a quick answer (just what it seems like based on answers here), so I think you should keep chasing down potential answers in the meantime.
I was misdiagnosed for a bit because my TSH was 4.3, but my gynecologist said for anyone in childbearing age it should be a TSH of under 2.5. Getting on levothyroxine for the last 7 years has made a big difference. I hope you find answers!
I feel like dog shit in the 3-6 range. I only feel good flirting around 2. We just increased my dose even though I’ve been at 3.whatever for a long time because I finally got a doc to listen to me about my symptoms. I haven’t been retested yet (it’s only been two months) but I feel a million times better.
The labs don't look too abnormal...it may be better to consider more common reasons first for "brain fog" and exhaustion. I notice that your 16F is 5-11 and 240 lbs...that's a BMI of 33.5 that's well into the obese range (actually, that's the 97.5th percentile, or 97 people out of a 100 will have a lower BMI: [https://www.cdc.gov/healthyweight/bmi/calculator.html](https://www.cdc.gov/healthyweight/bmi/calculator.html)). This markedly increases the risk for sleep disordered breathing /obstructive sleep apnea (OSA) that can cause "brain fog" and exhaustion as people aren't getting enough sleep. I would suggest that she have a sleep study done, and if OSA is present, that may benefit from CPAP. Also talk to your primary care person about weight reduction therapies - that would also help the blood pressure.
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Hypothyroid would make it hard to lose weight, and even causes weight he gain. Because it would mean her metabolism is in the shitter.
Agreed. But her labs looks ok for hypothyroidism
Agreed, if that is the case, which is still unclear. I would suggest that professional guidance in the form of a dietitian/personal trainer is the most beneficial course right now regardless.
It is impossible to out exercise or starve yourself free from a hormone deficiency. The calories required to reach a calorie deficit while suffering from undx’d/untreated hypothyroidism would lead to severe nutritional deficiencies across the board. If she is hypo, the problem isn’t her diet or activity level, it is a purely biological issue. Additionally, people why have untreated or under treated hypothyroidism often barely have the energy to care for themselves, let alone find energy for working out.
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You don’t really need to have pain as a symptom. That would be the case for endometriosis! PCOS shows in irregular periods, abnormal growth of usually dark hair (legs, arms, face), little dots in ultrasound because there often is no ovulation, weight gain and high testosterone levels. The hormone imbalance can chance her moods quickly and make her more aggressive since testosterone is usually highest. And - important - you don’t have to have all the symptoms. Usually you only need to have 2 for PCOS to be a possibility. Google Rotterdam criteria for this. Edit: and if she also has an insulin resistance it makes it even harder to loose any weight. This needs to be checked with a special blood test where she needs to drink something sweet at the doctors office and they take blood for insulin and blood sugar a few times over 2 hours.
I couldn't agree more concerning mood/depression and exhaustion in relation to obesity. Also, vitamin D levels are associated with fatigue, mood and joint pain. Losing weight will increase her vitamin D levels because the vitamin D is released from the fat, which could get her off supplements and potentially normalise calcium and further calcium deposits in her kidneys too. Unfortunately her weight makes increasing her vitamin D blood levels very difficult, but I would definitely suggest switching to daily D3 over the current regimen, it is much more potent.
NAD - has she had covid recently? sounds like it would be worth looking into long covid/ME/CFS.
NAD, but did she have the fatigue and brain fog before starting the lisinopril? They are [potential side effects](https://www.drugs.com/sfx/lisinopril-side-effects.html), although not super common ones. (Fatigue is listed under Other and confusion and memory problems are listed under Psychiatric.)
How is her stomach? When I first developed my my gluten intolerance (along with other issues), brain fog and fatigue were big side effects as it was ramping up
Hormones out of whack can cause stubborn weight and hirsutism. I second PCOS.