The med. establishment mess: thyroid and "adrenal fatigue"

YES YES YES!!!! See my sig below

You can join the yahoo NTH group too (I also hang out there), an offshoot of the STTM site: http://groups.yahoo.com/group/NaturalThyroidHormones/
They have a list of "GOOD DOCS" who will treat with natural dessicated thyroid (NDT or NTH) and NOT go by TSH only to monitor your therapy. Lots of good advice and info there, I recommend you join.

I was not one of those people that magically got well on CPAP.... I had to fix the thyroid and adrenal issues, and no- syncrap (eg synthroid, levothyroxine), didn't help AT ALL.... neither did the normal docs.

Thanks to the NTH group and STTM, I'm now on T3 only, and using the "T3 Circadian Method" to help low cortisol / shot adrenals. (I started on hydrocortisone but am slowly weaning that using the T3CM method). There's a website, book, and forum for this too:
http://groups.yahoo.com/group/T3CM/
http://recoveringwitht3.com/
Now I can finally get out of bed refreshed in the mornings!! I also have my life and MIND back. (Can't tell you just how bad the hypothryoid and adrenals was for me...).


Asli

I'm having the same issues, and Kaiser is useless. My TSH was 5.4 and their lab standards got to 5.5, so they said no problem, but I know that the standards are wrong and it should be around 2! My doctor finally agreed and wanted to put me on Levythyroxine (Synthroid). So I asked for a referral to an endo and that was a waste of time. They won't test Free T3 or for Hashimotos, and she was strongly arguing against taking any natural hormone because "pigs don't have the same ratios as humans". She also warned me against "getting infromation on the internet". LOL!

Well, I decided that taking a T4 only medication is not necessarily going to help me. Plus, there was another issue that the endo completely poo poo'd. I'm also doing a ketogenic diet (and I do NOT agree with Kris Kresser and other paleos who claim that ketogenic diets cause hypothyroidism) and as a result I was eating very low calorie--too low--900 to 1100 per day (no appetite). So between my GP visit and the endo visit, I upped the clalories, and by the time I was retested my TSH it was 3.8 (no medications!). But the endo totally denied that diet has ANYTHING to do with thyroid health, and insisted that I still needed to take the Levythyroxine.

I feel very much between a rock and a hard place too. I think the reality lies somewhere in between the rants of Stop the Thyroid Madness and my medical providers. I don't have the money to do independent testing (which the endo already said she would not even look at because "it's inaccurate") or to pay an independent practitioner.

So I'm self treating:
1. I eat a Brazil nut daily for selenium. (soaked and dried)
2. I'm considering iodine supplementation very carefully because I know I have a 90% chance of having autoimmune thyroid disease. I would add it very slowly and be aware of symptoms.
3. I'm taking care to eat sufficient calories, still Very low carb and paleo.

I think it's WORKING. I feel much warmer, and my weight is coming down (SLLLOOOOWWWWLLLY) but at least it's moving now. In January I'll have a round of tests to see where it is, but I'm not stressing about it now.

I'm just not ready to "go there" on the adrenal fatigue stuff.

echo wrote:You can join the yahoo NTH group too (I also hang out there), an offshoot of the STTM site: http://groups.yahoo.com/group/NaturalThyroidHormones/
They have a list of "GOOD DOCS" who will treat with natural dessicated thyroid (NDT or NTH) and NOT go by TSH only to monitor your therapy. Lots of good advice and info there, I recommend you join.
Thanks to the NTH group and STTM, I'm now on T3 only, and using the "T3 Circadian Method" to help low cortisol / shot adrenals. (I started on hydrocortisone but am slowly weaning that using the T3CM method). There's a website, book, and forum for this too:
http://groups.yahoo.com/group/T3CM/
http://recoveringwitht3.com/ Asli

I'm in the same boat as Janknitz -- I can't afford to go outside Kaiser for care and Kaiser has apparently made an across-the-board decision to not order Free T3 labs. Thanks echo for posting these links, I'll check them out.

One thing I forgot to mention is that I'm not so positive that I was truly hypothyroid just because of the 5.4 TSH. There's some evidence that lower T3 (which I can't get tested, so I just don't know) is a normal adaptive response to nutritional ketosis, not a pathological problem, and it may not require ANY treatment. That's one of the reasons I'm so reluctant to take the Levytyroxine, I think I don't really need it.

AND, how can you trust their tests? When I asked the endo about the significant change in my TSH with NO treatment, she told me that these tests fluctuate a lot. So how do you know what your levels REALLY are and whether or not they need treatment? It's all smoke and mirrors, I think.

I had a very bad bout of pnuemonia several years ago, and after that I felt like I was walking around in a chilled cement jacket all the time. It took all my effort to get dressed in the morning and slog through my daily routine. My TSH was about 6 and I was treated for hypothyroidism then. It helped, but then I started to feel horrible the other way--revved up, heart palpitations and hot flashes, but the doctor still wanted the numbers lower. About that time I had insurance problems (DH lost his job), the doctor charged me $300 out of pocket for a 15 minute visit and would not negotiate anything less, so I quit the doctor and the thyroid hormones and felt much better all around.

This time around, I do not feel like I did then--I feel great and energetic. That's why I'm really questioning if there is a problem or not.

AHI, I sent you a pm last night with the name of an endo doc in your area.

I went down the thyroid road also, and switched from synthroid to armour but my situation is a bit different, I only get tired in the summer, but like clockwork it happens every summer, each summer I had increased my armour a bit AND I ALWAYS revved up for awhile from the increase (to hyper) and the increase was always to small for that to have happened (so that is another strange link in my chain), this summer I went down the sleep apnea road and found out I have SA, and found out I have lots of centrals so am waiting for my asv machine (but I didn't increase the armour this summer and never got the hyped feeling). Now I have to wait for next summer and then I will be on CPAP/ASV for about 1 year and see if my summer fatique comes back. If not then I have to come up with another avenue to check. I have checked-ferritin/cortisol/iron/all vitamins. Ferritin was on low end/I increased it and no change/all the other things are normal. Not sure what else to check...I actually have thought of MS, because I heard that is affected by heat (but that is very hard to diagnose).

so if you have low TSH like 0.45 then you have too many thyroid hormones? my doctors think that this level is normal, but something is causing my central apnea/hypopneas/unspecified apneas. I went to an endo but for this level he said I didn't need treatment, I had one small nodule on my thyroid on sonogram
I have very low cortisol levels about 2.4 but my endo didn't want to treat it because he said I would be dependent on drugs for life if I started. it seems like it's caused by the sleep apnea

AHI, I sent you an email with the name of the East Bay endo doc -- it's been sitting in my outbox for several days. Do you still want it?

kaiasgram wrote:AHI, I sent you an email with the name of the East Bay endo doc -- it's been sitting in my outbox for several days. Do you still want it?

Thanks I got it. Sorry to take a while to reply. The weekend whirled by, and last night the forum didn't seem to work.

I am almost too tired to write this. I need to find good endo MD to work with . I am not into the herb thing and I refuse to believe that in this modern age our MD community cant figure out why a persons thryroid, adrenal gland don't work.

I have another appt with PAMF in Palo Alto but at this point all they seem to care about is making sure I don't have Addison disease. Don't seem to care that at 3.27 am blood level of corisol a person can't function. My TSH is way too high (use to be boardline low for 10 yrs now shot all the way up to top of boarder) but my T3 and 4 are within range. Dont seem to care that I have gained 30 llbs in 60 days. I cant see anymore either.

Help if you know of a good Endo MD in the Bay Area or sILICON vALLEY.

Thank you!

Hi - very sorry to hear about your trouble, and we here know what being exhausted is like. However, you've come onto a) an old thread to ask your question, and b) it's really unrelated to sleep apnea and cpap which is what this forum's about, though you got onto the old thread where a few talked about endocrinology one day. Hopefully someone will incidentally know an answer for you.

I had a phalanx of thyroid tests during a bad insomnia period in the summer, a time period which included my sister passing away. The results weren't terrible but gave my GP and me a moderate scare. I held firm and told them to test me when my sleep patterns were in a better place. The last results (with me sleeping better) showed one thyroid level was slightly down but the rest were in the normal range, so the everything is on hold while we wait for six months and more followup tests. It's best not to go off the deep end with just a couple of bad results in a short time frame, IMO.

I went from hyperthyroid to hypothyroid in about a three month period. Doctor saw that I was high ran the test again to confirm. Put me on tapazole (sp) for a month, retook test, told me to stop taking meds and come back in 2 weeks for repeat. When those came back he sent me to the hospital for additional testing to find my thyroid and adrenal glands were toast thus I just start living off more pills. Said pain meds probably did it but my intital thought was how come I went from high to dead after a month of the tapazole. I have been in pain management for a decade and both came back functional with my physical every year since I entered pain management. When it went up and they tried to slow it down it just died. I will have to do some research when I can but trying to work full time and do in-home health care for my wife is a full time job. Have to blindly trust the docs for the moment. At least my internist does not work for the government. In fact he officially stopped taking medicaid and medicare patients this week. Have gotten letters from over half my doctors they no longer take medicare so I am wondering if it is even going to be worth having by the time I reach retirement age. We had to file disability on my wife when she was declared disabled for life and once we saw the handwriting on the wall I just keep paying her BC/BS at 900 bucks a month. Thus her monetary benefits just barely pay for her insurance with enough left to pay for a few meds.