T Nation

Help, I Suffer from Idiopathic Hypersomnia


#1

Hey guys

Completely new here. Someone from reddit directed me here. Said you guys will be able to help me.

Anyway here’s my problem:

I suffer from idiopathic hypersomnia. I’m pretty much out of any other options at this point. My only remaining option is to get in shape and see what will happen

They’re looking into my insulin tolerance test results as we speak. If it shows that there’s nothing wrong with my adrenals and my pituary gland, I’ll be pretty much fucked, as in that case, I’ll have exhausted every single medical diagnosis by that time.

So I’m looking into getting on a low-dose testosterone cycle (proprionate or cypionate) with my doctor monitoring me all the time. Mind you, I do NOT have low testosterone according to tests
Testosterone has some dopamine-increasing effects as far as I know. It can also give you (more) energy to workout, increase your muscle protein synthesis, make you recover from workouts a lot faster, make you lose fat a lot faster and better

At this point it seems that this is my only remaining option - to get in shape. However I’m 100% extremely lethargic, which means not only is it extremely hard for me to exercise but I probably suck at recovering from workouts as well.

Can we discuss this? That’d help me a lot. I know how getting in shape is a huge help in normalizing energy levels. I’ve already corrected my diet.

My lab tests:

Testosterone Labs

Testosterone: 13,4 nmol/L (5.7 - 26.1)

Testosterone free: 1,82% (none)

Thyroid labs

T3 : 6,11 nmol/L (4.7 - 7.2)

T4: 15,56 nmol/L (10.7 - 18.4)

TSH: 2,9 nmol/L (0.5 - 4.8)

Anti-TPO: <28 (0.0 - 60)

Anti-Thyreoglobulin: <15 (0.0 - 60)

Cortisol labs

AM cortisol: 158 nmol/L (which increased from 44.8 nmol/L after some weeks of a 50 g fat diet, so by upping my fat intake) (118 - 618)

Cortisol (saliva): 2.2 nmol/L taken at 9:45 AM (3.6 - 28.4)

I also suffer from mild OSAS, AHI = 7.7. My sleep doc says it’s impossible my fatigue is caused by sucj a mild form of OSAS.

So my doctors are saying this is all in my head but I don’t believe so. The only symptoms I have are: Extreme fatigue (sleeping 15 hours a day and still feeling like I haven’t slept for 3 days), dizziness and nausea sometimes. I refuse to believe there’s NOT something seriously fucked up with me endocrinologically or neurologically speaking. Apparently unless you’re dying they don’t take you seriously even if your quality of life is 100% shit!!!

I would greatly appreciate any comments, any hints, anything at this point. My desperation is just insane at this point. I failed 8 fucking subjects in my first year of uni because of the unbearable exhaustion


#2

Thyroid lab ranges are mostly useless.
TSH should be closer to 1.0

Thyroid must have iodine to function. What is your history of using iodized salt? Doctors never ask…

Thyroid manages your metabolic rate hour to hour via fT3 the active hormone which was not tested. Please test fT3, ft4.

#See last paragraph to self eval overall thyroid function.

free T, FT, is typically around 2%, so not your problem.

Get labs for FT absolute, do not care about %

With low-T, you need to test LH/FSH to determine is problem is pituitary or testes.

Vit-D is very critical. Please find 5000iu Vit-D3 tiny oil based capsules and take 25,000iu first 5 days and 5000iu thereafter.

If you can get a progesterone cream and apply a small amount to your wrists, this may increase cortisol. In the adrenals progesterone–>cortisol.

If you are using a statin drug to lower cholesterol, in some people, this causes a CoQ10 deficiency that can cause very low energy levels.

TRT will make your sleep apnea or snoring worse.

Where are you located?

Please post other blood work with ranges.

We need more info about you, see first sticky below.

Please read the stickies found here: About the T Replacement Category

  • advice for new guys - need more info about you
  • things that damage your hormones
  • protocol for injections
  • finding a TRT doc

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.

KSman is simply a regular member on this site. Nothing more other than highly active.


#3

Please link me to such references!


#4

Thank you for your post man! I was told to ask for YOUR advice. You’re indeed very knowledgable

Does FT absolute mean Free Testosterone Absolute?

I’ll test LH and FSH for sure

I already take 6000 IU vitamin D, 1 multivitamin, 900 mg EPA+DHA, 100 mg coenzyme Q10, probiotics, 500 mg magnesium citrate, 4 x 500 mg vitamin C, 1 b complex every day

If this matters, I do not react to stimulants at all at varying doses, meaning I get the side effects but not the effects (energy, motivation, focus). They are all legit pharma grade prescribed ADHD meds. Does that have to do with the adrenal glands or with the thyroids?

I am not using any medications, statin drugs included.

Regarding the thyroid basal temperature test, is that the test where you wake up and immediately measure your body temperature? I’ve already done that for 3 days in a row and it was always 36-36.5 degrees celsius

LAB TESTS

Vitamin B12 : 339 pmol/L (157 - 672)

FT4: 15,56 pmol/L (10,7 - 18,4)

FT3: 6,11 pmol/L (4,7 - 7,2)

TSH: 2,9 mIU/L (0,5 - 4,7)

Vitamin D: 75< nmol/L (75< normal)

Prolactin: 299 mIU/L (45-375)

SHBG: 36,1 nmol/L (17,3 - 65,8)

Testosterone: 13,4 nmol/L (5,7 - 26,1)

Testosterone free: 1,82%

DHEA-S: 2,18 umol/L (0,94 - 15,44)

Cortisol: 158 nmol/L (118-618)

Cortisol saliva: 2,2 (3.6-28,4)

Anti-TPO: <28 (0-60)

Anti-Thyreoglobulin: <15 (0-60)


#5

-yes

I have never understood ADHD, butl am familiar with some issues. Your flat response might be low cortisol. Please see progesterone above.

Waking 36.5C is good, 36C not.
Also need to see that you can hit 37C mid-afternoon.

fT4 and fT3 are nice a mid-range. TSH is better nearer to 1.0
Thyroid might be working hard because of a lack of iodine.

Where are you located?

This is confusing:
Vitamin D: 75 < nmol/L (75 < normal)


#6

I’m in Germany

What I meant by the vitamin D part is that anything above 75 nmol/L is normal.

Mine was 80 nmol/L

I eat 1.5 g salt a day, is that enough? The american heart association says yes

Can you buy progesterone cream OTC in pharmacies?


#7

The issue is getting enough iodine with your iodized salt.

If salt is 15-25* mg/kg, that is 15-25 mcg per gram or you are getting 22.5-37.5 mcg from 1.5 grams iodized salt. Not enough.

  • German regulations, voluntary not compulsory. Some animal feeds/fodder may be supplemented as well as some foods. So it gets complicated. So hard to know is you are getting enough iodine. TSH=2.9 suggests not!

Please provide link to your vitamin’s contents.


#8

It’s in Hungarian though xD

A-vitamin 1500μg 188% Vitamin A
B1-vitamin 4,5mg 409% Vitamin B1
B2-vitamin 7,5mg 536% Vitamin B2
Niacin 25,0mg 156% Niacin
Pantoténsav 15,0mg 250% Panthotelic acid
B6-vitamin 10,0mg 714% Vitamin B6
Folsav 200,0μg 100% Folate
B12-vitamin 14μg 560% Vitamin B12
C-vitamin 80,0mg 100% Vitamin C
D3-vitamin 10μg 200% Vitamin D3
E-vitamin 15,0mg 125% Vitamin E
Biotin 250,0μg 500% Biotin
K-vitamin 40,0μg 53% Vitamin K
Vas 10mg 71% Iron
Cink 15,0mg 150% Zinc
Réz 1,0mg 100% Copper
Mangán 2,0mg 100% Manganese
Jód 150,0μg 100% Iodine
Szelén 50,0μg 91% Selenium
Króm 100,0μg 250% Chromium
Molibdén 100,0μg 200% Molybdenum
Bórsav 1,0mg boric acid
Paraaminobensoesav 10,0mg Paraaminobenzoic acid
Rutin 5,0mg Rutin
Likopin 0,3mg Lycopene
Lutein 0,3mg Lutein


#9

Vitamin is light on selenium.
Does not provide enough Vit-E and might not be best type.

Do you have labs for blood count: RBC, hemoglobin, hematocrit [HTC] etc?


#10

No but I’ll get them tested asap, thanks


#11

RBC: 6,5 T/L (4,5 - 5,9)

Hemoglobin: 189 g/L (140-175)

Hematocrit: 0,59 L/L (0,40 - 0,52)

Also my cortisol is really low AGAIN: 85 nmol/L (115-652)

AND my HGH too: <0.05 ng/ml (0.00-3)

My TSH is 3,39 mIU/L (0,5-4,78)

My FT3 and FT4 are fine

Creatinine is very high too: 214 U/L (39 - 171)


#12

DO NOT TEST GH/HGH!
It is released in pulses with very short half-life.
Test IGF-1 with is a better measure of GH than GH itself.
It is worrying that it does report <.05 which means undetectable.
Ask to have IGF-1 done ASAP as a followup.

TSH is worse.
"My FT3 and FT4 are fine"
please post the numbers and ranges.

Cortisol peaks in morning, then drops.
Lab ‘AM Cortisol’ needs to be done at 8AM or one hour after waking up.

Cortisol: Ask for these labs:
Have ACTH tested. It is low or elevated?
Have ACTH injected
You wait around for a while…
You have cortisol tested which should increase
If it does not increase, adrenals are the problem.
if it does increase, pituitary is not releasing enough ACTH.

See my prior comments re cortisol and progesterone.

Low cortisol could leave you tired.


#13

FT4 17,25 pmol/l 11,50 22,70

FT3 6,21 pmol/L 3,50 6,50

I’ve already had an insulin tolerance test done. I’ll be sent the results within a week

My doc said no need for ACTH test, we should do ITT. We did

My cortisol was measured at 9 AM AFAIK


#14

ITT?

FT3: 6,11 pmol/L (4,7 - 7,2)
FT3 6,21 pmol/L 3,50 6,50
Lab ranges changed.

First seemed nicely midrange 11.9/2.

Second is near top of range. 10/2

  • which suggests possibility of elevated rT3

I did ask for more info about your oral body temperatures.


#15

Sorry, I’ll do the body temperature testing for 3 days tomorrow

ITT is Insulin Tolerance Test


#16

Hey man

I’ve just received the insulin tolerance test results and according to it: Nothing is wrong with my adrenals or with my pituary glands

But then, why the, excuse my french, fuck do I not get a reaction to stims? :confused:

Also I’ve lost 15 pounds of weight thanks to diet and exercise, feeling kind of better mentally, I have more energy I thinK?