Can more be done for me re: DHEA and Cortisol ?

[charlie1]

I have been ill with ME/CFS and autonomic dysfunction since spring 2012. Recently I looked over past lab results and am surprised that my doctors aren't doing more to help me when lab results and symptoms show clearly there are some deficiencies. But you know how it goes, if they prescribe something and it doesn't work, they don't know what to do so nothing is more is done. I've been too ill to make much sense of all this until recently.

If I post some results, can some of you who are knowledgeable with endocrine issues give me your opinion concerning my labs?? Hopefully someone will know more than my doctors:

Cortisol

* reference ranges 240 - 618 nmol/L . Looks normal for 2012 but not 2013. I live in Canada and have a very conservative family doctor and endocrinologist. I could ask for another cortisol test but no guarantee either one will agree to it.
2012 AM cortisol 506 nmol/L
2013 AM cortisol 237 nmol/L

I only have had my AM blood tested. Is that unusual? Maybe I should send saliva to the Genova Lab for adrenal testing (cortisol, DHEA) where saliva is tested from 4 different times periods/day. Are their lab results accurate? Do they also provide an analysis?

My DHEA-S has been 'undetectable' <.4 umol/L (very low) ever since 2008 but the docs won't prescribe supplements for some reason! Although I don't know my DHEA-S levels prior to 2008, I had a hysterectomy in 2004 due to endometriosis so likely that is part of the reason for my low testosterone and DHEA-S. But knowing that my weakness and energy issues are possibly partly due to lack of DHEA, I decided to order the DHEA on-line (need a prescription in Canada) . Two months ago I started taking 5 mg of micronized DHEA o from Douglas Laboratories.

Hypothyroid-Over the last 4 years my TSH has been creeping up (9.6 last Oct.) and finally my GP prescribed T4 Eltroxin @ .1mg when I begged her for something/anything to help with my cognitive impairment, always feeling cold, and chronic low blood pressure (normally my systolic is in 90's, diastolic low 50's - mid 60's allthough my BP has been as low as 77/38).
side note: The 9.6 TSH was discovered after I was taken by ambulance to the ER 4 months ago. I had suddenly developed severe 'short term amnesia' that ended up lasting 10 hrs. Don't know if that's related to any of my ME/CFS stuff but the ER docs assumed that O2 deprivation was the cause. Don't know if that is true but since then my diastolic is often now in the 40's. Basic cardiac testing (Echo, EKG) was normal so we assume the blood pressure issues are due to the autonomic dysfunction.

Hyperthyroid - 2 months after being on T4 (January 2015) my TSH was .02 and Free T4 is 24 which makes me now hyperthyroid. Doc decreased my dosage and brand to Synthroid .088 mg which isn't much lower of a dose so now am feeling the symptoms of being hyperthyroid.. I'm hot, have restless legs at night, insomnia.

Do you think that the latest hyperthyroid symptoms might partly due to over dosing with the DHE. (although 5mg isn't much, right?) I attribute my feeling stronger to the DHEA because since I started taking it about 2 months ago, my muscles are working better now at keeping my joints in place...I am very hypermobile and my loose ligaments causes frequent subluxations/dislocations. Or maybe its the T4 that's helping with the strength issue?

I continue to have PEM that can cause crashes about every 2 wks lasting 2-5 days after doing anything from climbing the stairs to walking outside or from mental activity but I'm doing so much better than spring of 2012 when this all started.
UGH...I just want to be on the right track with my hormones. What a shame if I could have been feeling lots better while waiting for a cure or good treatment for ME/CFS. That's why I'm hoping you can be of help.

I appreciate any feedback. Thanks a ton.

Charlie

 

[Tammy]

I'm no expert on thyroid and meds for thyroid ................but within 2 months you went into hyperthyroid and that's pretty fast. What is the normal range for T4? Your doctor should be dosing your meds based on free T3 and free T4............and not TSH. Sounds to me like your doctor is overdosing your med. I don't think your hyperthyroid symptoms are due to the DHEA............it's the Synthroid in my opinion. Could you please post your last two thyroid labs.........the T4 along with the normal ranges as stated on lab sheet. As I said I'm no expert but did learn a lot when my daughter got Graves disease.

 

[Gingergrrl]

@charlie1 I read your post really quickly and need to re-read but sometimes if someone is cycling between hypo and hyper-thyroid it is a sign of Hashimoto's Disease b/c the thyroid is under attack by the antibodies and it tries to temporarily fight back. Have you been tested for the two Hashimoto's antibodies? Also is Armour Thyroid an option for you b/c it contains T3 and T4 (vs. Synthroid which is just T4.) Thank you for your PM as well and I plan to answer as soon as I can. I wish you were feeling better (and me, too!)

 

[WoolPippi]

My two cents, not worth much more:
Your Cortisoltests are the "give the nagging lady something to keep her happy-variety". Results for these pin prick Cortisol tests can vary widely and are basically only usable to see wether your adrenals are still there at all.
Your test is reason for concern as it is so low but it's still in range so dr. says:"look lady, your adrenals are still functioning. Nothing we can do."
Edit: it's not in range! "Dr! Dr! We have got a problem! We've gotta investigate this more!" End edit.

Your answer ougth to be:"look here dr., they might be functioning but you must agree they are not functioning optimally. I want this sorted. I want better function!"
See if you can get your endocrinoligist to agree to start you on very low hydrocortisone. Just slowly working your way up to 10 mg per day. "Just to support the system somewhat."
He/she might think this will be stupid, since real supplementation starts at 17-20 mg/day (which you don't need). But that's also when the suppression of the function of healthy adrenals starts, for which he/she will be weary.
"See it as an experiment, dr. I'll try it out for 8 months, to see if it will improve overall health. And wether we get that 8am cortisol test in better range."

Regarding DHEA: i did this too, self supplementation. Felt great. However, my endo advised against it because we have no control over to what hormones it converts in the body. He said:"feel great, grow a moustache."
But as long as you can do with a bit of testosterone -and we all can- it's allright.

What I miss is info on your progesteron levels. Progesteron is my one and all. It's not an sex hormone.
It's also available in micronized, bio identical form. Here in Europe the brand is Utrogestan
100 mg per day for any man or woman, to ease up on the adrenals.

What you really need is a broad spectrum, 24 hours hormone panel. This is blood plus 24hr urine. This is all the hormones. I got mine from dr. Hertoghe in Brussels, years ago.

Your endo might not be a broad spectrum person, might be someone who specifically likes pancreases? I think most like to specialize.

 

[charlie1]

@Tammy , I too think the problem is more with the T4 dosagae than the DHEA. Unfortunately there is so much controversy over thyroid reference ranges that different labs use, esp. the TSH. I am just getting out of a 5 day crash and must do my best to travel 3 hrs away tomorrow to attend an 85th surprise party for my Father in law. I appreciate your feed back. I'll post those numbers in a few days.

@Gingergrrl , I don't think I'm really cycling 'naturally' between hyper and hypo.For almost a decade I've had almost all listed symptoms of hypo but my doc wouldn't treat me for it b/c my numbers were always normal. She doesn't believe in treating for symptomatic thyroid disease without the lab number confirmation. When my TSH went up to 9.6, she begrudgingly complied. I've since learned that .1mg is a high dose to start with (esp b/c my T4 and T3 weren't too bad)

@WoolPippi, It is extremely unlikely that my GP or endocrinologist will agree to the low dose hydrocortisone as they are both old school...all about the lab results . But I like your suggestion and will ask anyway. I've always been a bit leery of the DHEA converting into estrogen which could activate my endometriosis again so your comment about having no control over how the DHEA gets converted makes me rethink this trial I'm doing. Ugh..Two years after the hysterectomy I became post menopausal, confirmed with both the physical and mental symptoms as well as with blood work. I very hesitatingly tried Bio-Identical HRT after the doctor swore there was "No way you'll have endometriosis come back". Well it did and it was horrible so I'm very afraid now of taking hormones other than possibly low dose testosterone although.I don't want to become hairy nor to start beating up people!( sweet little me started feeling aggressive after 1 month of using the cream mixture!).
My endocrinologist is the one who diagnosed my POTS after everyone else was writing me off as a nut job so I am very thankful for him but yes, his specialty seems to be Diabetes.

 

[Tammy]

@charlie1.........if you just learned that .1mg was high dosage to begin with..............no wonder you went into hyperthyroid..............and you said your t4 and t3 weren't too bad....................this is exactly why Doctors should not dose the meds based on TSH values. They should know better.................................... I hope your trip goes well.

 

[charlie1]

@Tammy ...T3 was not tested in these last few blood draws.

TSH T4
Ref ranges "subclinical hypo" 5.00-15.00 mIU/L; >15 "hypothyroidism" Ref range (7.4 - 21.1 pmol/L)

June/14 TSH 3.6 Free T4 13

Oct /14 TSH 9.6 " Free T4 11.8

Jan/15 TSH .02 hyperthryoid <.03 Free T4 24.0
after 2 mths of .1 Eltroxin.

Less conservative endocrinologist use reference ranges for TSH as .3 -3.0 and they want your T4 in the upper 1/3 of the reference range.

Within 3 wks of supplementing with T4 I felt warmer, didn't have embarassingly COLD hands and my low heart rate started to increase (was bradycardic). But now I'm very warm, have RLS and can't sleep!

Thanks

 

[charlie1]

@Tammy I've tried to re-post but the chart still is all messed up! This may help -
T4 reference range is 7.4 - 21.1 pmol/L
TSH reference range is:
subclinical hypo 5-15
hypothyroid >15
hyperthyroid <.03

 

[heapsreal]

Morning cortisol should be in the upper third of the range to be optimal.

Dhea is important and should atleast get it within normal range for good health. Facial hair etc shouldnt be a problem if you supplement to get into normal range, no higher.

Best to get adrenal function sorted before trying thyroid stuff as sometimes improve adrenals can improve thyroid function? ?
you could try pregnenolone in small doses like 5mg and slowly increase. It can increase both cortisol and dhea. If after using pregnenolone and dhea hasn't improved much then can add low doses of dhea eg 5mg?

 

[Tammy]

Got it..(labs)...................What does your Doctor say about your hyper symptoms? Does he still want you to continue on the Synthroid at the same dosage? If he does I would look for another Doctor. I never was impressed with the prescription thyroid meds............there are other alternatives that address thyroid that are much better than Synthroid. I hesitate to tell you what to do with your meds but if it was me.............I would be weaning down the Synthroid. Note: Sometimes when you start tweaking your thyroid meds you may notice some side effects (maybe not) that would make it seem like you are doing something wrong. Often these symptoms are just temporary and will smooth out within several days............your body is just adjusting to the dose change.

The DHEA at 5mg seems like a safe dosage and if you noticed a benefit I would continue taking it and maybe once in awhile give yourself a break from it.

Sharing this next part in case you might want to consider an alternative...................
My daughter ended up extremely hypo after her endo overdosed her with anti-thyroid drugs...............she ended up feeling much worse than before she started treatment. (We fired him) We really had to investigate on our own and ended up learning a lot from support sites.........DailyStrength was a good one. She stayed hypo for quite awhile. She ended up taking thyroid support supplements as well as adrenal supplements from Standard Process and they worked really nice for her. They weren't too potent for her system. She also added in Selenium which is good for hyper as well as hypo.

I know it can be so frustrating trying to sort it all out. You should be due for another test for thyroid......I wouldn't wait for 2 months in between..........especially because of your symptoms.

 

[charlie1]

you could try pregnenolone in small doses like 5mg and slowly increase. It can increase both cortisol and dhea. If after using pregnenolone and dhea hasn't improved much then can add low doses of dhea eg 5mg?[/QUOTE]

@heapsreal
Thanks for that advice. I will see either a functional doctor or naturopath in the next few months and look into the pregnenolone. Also thanks for letting me know about the optimal cortisol level.

 

[charlie1]

@Tammy , thanks for sharing your daughters experience. Hopefully she's doing well with that protocol.
I've already started to decrease my dosage of T4 and will be making an app't with my doctor to discuss symptoms.

Regarding the DHEA, I do get concerned that it might be converting into estrogen although I haven't yet experienced any adverse side effects (as could possibly pregnenolone if I started to take it) . My hope is that DAit just gives me much needed energy and strength without causing endometriosis to be re-activated (through estrogen). I'd hate the pain of endometriosis but I also hate having PEM and morning crashes. It's so difficult to pick which issue matters more to me.

There is something called KETO 7 (I think?) that apparently is like DHEA but does not convert into anything else. Anyone have experience with that?

 

[L'engle]

@charlie1 I've taken 7 keto and found it much milder than than regular DHEA. DHEA improved my physical stamina but kept me awake all night so my overall symptoms were not improved. 7 keto i think just made me feel a little better. Unfortunately I tried to order it online recently and the site wouldn't let me order it to Canada even though 7 keto doesn't need a prescription. I think it is in stores here but at a very high markup. Still it's one I plan on trying again because it had no side effects that I can remember.

 

[charlie1]

@L'engle Thanks for your reply! I'm from Canada also so I would have the same problem ordering on-line. If it doesn't need a prescription, my husband can drive to nearby MIchigan and get some although it seems you are saying you felt stronger with the DHEA than the 7 KETO. ? Do you remember the dosages you took of the DHEA and the 7 KETO?
I'm hoping my insomnia is due to the T4 supplementation which can be weaned down, rather than to the DHEA which is helping my strength issues but I still worry about the endometriosis reactivaton.
If I get some replies from people that say the 7 KETO helped with strength and energy AND that it does not convert to other hormones, I will get some from across the border and give that a trial.

 

[Rand56]

@charlie1

Hi charlie

Any time I have ever tried DHEA, it's been a complete bust for me. More than likely it went all to estrogen for me. I've tried micronized pregnenelone caps before. Got an intial boost and some antidepressant effect, but like most anything else, it petered out and I felt uncomfortable going higher up in dosages. I have a topical preg liquid/gel on order and I'll be able to titrate it accurately by starting off low to see how that goes.

 

[charlie1]

@Rand56 aw, that's too bad it didn't work for you. what does of DHEA were you at?
Are you nervous that the preg liquid might convert into estrogen?

 

[Rand56]

@Rand56 aw, that's too bad it didn't work for you. what does of DHEA were you at?
Are you nervous that the preg liquid might convert into estrogen?

I tried numerous dosing protocols and oral, sublingual, and transdermal LOL Also tried Arimidex one time at a very low dosage. Did not feel so good taking that either. Yeah, I'm well aware this preg I ordered could also turn on me and enough of it going to E also. I've never done preg topical, so I'll give this a shot. I'm taking some mangosteen which is suppose to be a decent AI. Also working on taking off about 10 to 15 lbs should help me lower my E too. Good thing is, ever since I started taking some high dose thiamine along with some B2, it has curbed my appetite some. Good thing since I need to lose some poundage. Also, atleast my libido is pretty decent and really don't have any noticeable gyno issues. Last time I had my bloodwork done my estradiol was at 41.2 pg/mL, and LEF recommends for males to be around 25.0 thereabouts.

 

[charlie1]

I found this which might be of interest to those who have posted. Thanks everyone.

http://www.yourhormones.com/protocols/proper_use_of_hormone_precursors.html