I found a book that may help you. Actually I am strongly recommend to you. You can even read the review on Amazon about it. One of the authors of the book Jill can help you. He uses Chinese herbs and refer you to accupuncture. He even lists your symptom of try type.
The book is
Making Babies: A Proven 3-Month Program for Maximum Fertility
http://www.amazon.com/gp/product/0316024503/ref=oh_details_o00_s00_i04?ie=UTF8&psc=1
If you are hypopit, why are not not being treated by a neuro-endo? Have you been to a pituitary center? Do you have a pituitary lesion?
Adrenals don't typically fail, they get auto-immune disease, or the pituitary fails to signal them - so maybe your ACTH is not high enough now? If your cortisol is high at night - that is a loss of diurnal rhythm - that means you have elevated cortisol, not low cortisol and that means Cushing's syndrome. I had the same. I had Cushing's disease - had a pituitary lesion.
I take thyroid and adrenal meds - and I take high doses of thyroid meds... yeah endos try to treat to TSH which is just idiotic - they should treat the thyroid and not the pituitary (unless of course, they are trying to treat the pituitary). You should look into getting treated for the Cushing's. If you take steroids - you are just throwing fuel into the fire.
My TSH before I went on thyroid hormones was 3.67. It went to zero a month after starting thyroid meds and has been at zero for 5 years. I do have hypopituitarism, but since endos know nothing about treating thyroid they all panic when they see my TSH at zero and lower my meds, which only ended up lowering my FT4 and FT3 levels. My TSH remained at zero. After 5 years of my thyroid levels going up and down and my hormone levels being out of whack, my adrenals have started to fail. They're too low in the morning now and too high at night. I've had saliva tests done for cortisol and most docs do still go by that, but they only seem to do blood testing now for female hormones, which doesn't tell the whole picture for me. It's gotten to the point where no one knows what's actually the cause of the problems so they don't know what to treat. I have learned that I can't tolerate high doses of thyroid meds. I don't go hyper, but it makes me adrenal symptoms worse.
A TSH that low indicates a pituitary issue. Of course - the endiot should have done real thyroid testing instead of just pituitary (TSH) and with such a low TSH gone on to do more testing to find the real issue.
BTW - for my Cushing's testing, I did saliva and urine testing at reputable labs under doctors orders - there are tests to determine such as cortisol binding globulin if the test will be valid or rather the interference and they should be doing serum blood tests as well to get the entire picture - thus you cannot do all saliva, or all urine, or all blood but some of each to see how it all comes out. I had low morning cortisol and high in the evening.
I've had 3 doctors tell me my thyroid meds aren't getting into my cells based on the fact that my labs were always showing I should be feeling great (FT3 at higher end of range, FT4 in mid-range) and I still had severe hypo symptoms. Since I started taking thyroid meds, I've felt more hypo than I've ever felt in my life. I have never had a period in my entire life on my own without being on some kind of HRT. I was on BC for 20 years and maybe had a period once a year if I was lucky. Since starting thyroid meds I didn't have a period for 3 years and I started thyroid meds when I was 40. When my cortisol and hormone levels were higher when I first started on thyroid meds, I could feel the effects of the meds and started feeling better, but I had stupid endos who only looked at my TSH, which was at zero, so they lowered my meds. Then I got off BC and went on bioidentical hormones, and since then my cortisol has gotten too low in the morning and my hormone levels have dropped and I don't feel the effects of my thyroid meds at all except nausea when I'm on too high a dose. I have never gone hyper.
Thanks, I'll try those other forums. I don't know where to go anymore.
I had TT almost 18yrs ago for graves/hyper I was 24yrs old then. I was on 200mcg of thyroid medication & I was also on BC for more than 10yrs after my son was born. Once I got off the BC my thyroid medication had to be adjusted because I was no longer on BC. My dr. said it had to do with the BC as to why my thyroid level was changing to needing a lower dose.
Of couse as I got older (42 now), I have needed an increase. My gyno, Endo & PCP all tell me it is due to aging in women.
I however have never been on HRT.
That's the big question. I think they just still lump me in the group that's still having periods since I do have them when on HRT." Well, I assume that with the right HRT therapy, "I" could still have periods, too. It almost seems that you've been in menopause ...forever???
MH has a Women's Helath forum and a Menopause forum...those members might be a lot more in tune with HRT than we are on the thyroid forum... Even if you're not technically in menopause, I would imagine they'd have members who are very attuned to HRT and testing.
Who told you your thyroid meds aren't getting into the cells, and what did they base that on?
I had to stop because I couldn't afford the doctor who was prescribing them anymore and I haven't been able to find a doctor who understands hormones well enough to prescribe them to me again. I'm sure stopping the HRT did affect my thyroid and adrenals, but until I can find a doc who knows how to test and treat hormones correctly, I have none to take.
That's the big question. I think they just still lump me in the group that's still having periods since I do have them when on HRT.
I don't know of any hormone forums. Is there one on medhelp or do you know of any other forums?
My last thyroid labs came back fine. My FT3 was 4.0 and my FT4 was 1.54, but I still have the same symptoms that could be both thyroid and hormones or adrenal as well. I've been told the thyroid meds aren't getting into the cells to work and I think it's because my hormones are too low and so is my morning cortisol, but finding a good doc who knows what they're doing is very hard. I've been to 16 docs in the past 5 years and no one seems to have a clue what they're doing.
Well, you might have more luck posting this on a different forum. My only knowledge of female reporoductive hormones is very general.
So, just out of curiosity, why was your HRT stopped, and do you have the option of restarting? All the symptoms you list can be thyroid symptoms as well. Have you had thyroid labs since d/c'ing the HRT? D/c'ing the HRT might have changed your demand for thyroid hormones.
So, if the only choices are pre-menopausal, pregnant and menopausal, how do they classify you if you've basically never had periods? How will they know when you are menopausal? Certainly, when I was peri-menopausal (and it did last about 10 years), my periods started to get whacky.
They're still too low for my age if I'm still not having any periods at all and I have all the symptoms of low estrogen. My eyes, hair and skin are super dry, my brain fog has gotten a lot worse since stopping the hormone replacement and I feel even more lethargic and indifferent towards life than ever before. It all got worse two weeks after stopping the hormones. So regardless of what the labs show, if I'm feeling ten times worse after stopping hormone replacement, that means I still need it.
Labs don't adjust the range for age, they only list ranges of where they think you should be if you're still having a period, if you're pregnant or in menopause. All my docs still use the range for a person still having a period, and that can be anywhere from 13-50.
You may already have thought of this, but aren't reproductive hormone tests adjusted for age? Certainly they must be as one wouldn't expect a post-menopausal. or even a peri-menopausal (can last up to 10 years), woman to have the same levels as pre-menopausal. Perhaps your hormones haven't changed, but the range has due to your age??? Maybe at 45, your levels are now normal, though they were way too low when you were younger. Just a thought...
I am hypothyroid with Hashi's and have hypopituitarism, adrenal imbalance (low in morning, high at night) and hormone imbalances and deficiencies. I was diagnosed at age 17 with ammenohrea and at the age of 45 I've only had maybe 10 periods my entire life. I was diagnosed with osteoporosis in my early 30's and was told it was due to low estrogen. So what I'm not understanding now is how, suddenly after over 20 years of my body not producing hardly any hormones, are the blood tests suddenly showing that I have enough, even though I'm STILL not having any periods on my own and I have all the symptoms of low hormones? That's what I'm not getting. My blood labs for both hormones and thyroid keep coming up as normal, yet I'm getting worse every day. I've had at least 3 docs tell me my problem is I have the hormones in my blood, so they're showing up on labs, but they're not getting into the tissues to actually do anything. So how do you measure what's active in the tissues if docs will only do blood tests?? It seems to me you need both blood AND saliva tests to get both.
Note this excerpt from above; pay particular attention to the second paragraph:
"Ovarian hormones are carried in the bloodstream three ways: strongly bound to sex-hormone binding globulin (SHBG), weakly bound to albumin (ALB), and in the free form (not bound to carrier protein). We used to think that only the free-form hormone was biologically active at hormone receptors, so we often ordered blood tests for both total and free hormone levels.
Recent research has shown body tissues use both weakly bound and free-forms of these hormones at receptors. Saliva tests only measure the free, unbound portion of the hormone molecule in serum, so they don’t give a complete picture of the available potentially active, or bioavailable, hormone."
If there were so much more merit in the saliva tests than the blood tests, I'm sure doctors would not have been so willing to give them up.
I'm sorry, can you refresh my memory, please? Do you have a thyroid condition or is your problem strictly with reproductive hormones?
I actually think urine testing is the best for hormones, but no doctors support that either. They think testing blood works for every problem.
Yes, those are all the reasons the holistic doc said she no longer uses saliva tests (she did use them for 8 years). I still belive blood tests don't reveal all that's in your system and what's actually being used.
Blood tests for hormones only test estrodial, progesterone, total and free testosterone. Urine tests test for all 3 types of estrogen, including the bad types that cause cancer. Blood tests don't look for those. If they did, I'm sure more women could have prevented getting breast cancer.
I was on a Biest/testosterone/dhea cream and also a progesterone cream for 2 years, but never felt better. I think my cortisol getting too low in the morning though might be the cause of a lot of this. Five years of not being treated properly has caused my adrenals to burn out.
Most doctors do not accept saliva tests, as being accurate; nor do insurance companies.
http://www.drweil.com/drw/u/QAA400289/are-salive-tests-worthwhile
From: http://www.newsmaxhealth.com/dr_vliet/saliva_hormone_test/2010/07/19/332931.html
"Compounding pharmacies and some non-M.D./D.O. practitioners widely promote saliva tests sold through their practice. Some practitioners use saliva tests because under current prescribing regulations in most states, they cannot order blood tests. Such practitioners claim that saliva tests are more “reliable” than blood tests because they measure the free hormone. It turns out these claims are false, based on newer research."
From the same site:
"The Problems With Saliva Tests
Ovarian hormones are carried in the bloodstream three ways: strongly bound to sex-hormone binding globulin (SHBG), weakly bound to albumin (ALB), and in the free form (not bound to carrier protein). We used to think that only the free-form hormone was biologically active at hormone receptors, so we often ordered blood tests for both total and free hormone levels.
Recent research has shown body tissues use both weakly bound and free-forms of these hormones at receptors. Saliva tests only measure the free, unbound portion of the hormone molecule in serum, so they don’t give a complete picture of the available potentially active, or bioavailable, hormone.
Another serious problem is that the saliva test kits sold over the Internet and in pharmacies use plastic tubes. New research has found that these plastic tubes actually release estrogenic compounds that degrade the hormones and make the saliva levels unreliable.
Researchers in Germany showed clearly that glass tubes have to be used for saliva tests to have samples not contaminated by hormonally active compounds in plastics.
Another problem with saliva test kits in the United States is that many companies use hormone assays that were designed for blood, not saliva. This throws another flaw into the readings obtained with saliva tests.
Many variables affect the amount of saliva produced, the excretion of hormones from serum into saliva, and the amount of hormone in serum in the bound vs. free state. For example, many common medicines affect the amount and composition of saliva, such as medicines with anticholinergic or antihistamine effects. This includes many antidepressants, allergy medications, medicines to control bladder leakages, some headache and sleep medicines.
All of these decrease saliva production, which alters the free hormone in saliva. Medications that affect protein-binding also drastically alter the amount of bound vs. free ovarian hormone in serum."
What hormone blood tests are being done? What hormone replacement were you on?