posted
Hello everyone... I just wanted to say, i was at a pretty famous hormone doctor. He gave me a lot of hormones i did not use yet. All pretty high quality, bio identical.
First of all, the adrenal treatment helps to some point but it makes the overall muscle weakness much much worse. So he gave me testosterone gel. The testosterone gel helps a tiny bit but makes me body crave for more hormones / t4. Its all a cycle of crap. I add this, so i need this... but i need the thyroid hormones to feel more present and clear but its not enough.
Overall im two weeks into treatment and i dont feel a lot better. I felt a tiny bit better first, but i say this was because of the testosterone. I also started this because my muscles are totally wasted and i have huge weight loss. I still need to add growth hormone which seems to be the most helpful. Hopefully this will improve something.
Another thing is, doctors always told me i have hashimotos but now my thyroid is actually enlarged! What the... ?!
I think this might all be lyme related and all the treatments dont do too much. But i was hoping i could gain some weight and muscle. Maybe to early to tell but so far its nothing to talk about.
Anyone else had this?
Posts: 141 | From cali | Registered: Nov 2012
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posted
Indica, everything is in the balance. Thyroid and sex hormones work in conjunction. So does every hormone you need replacing.You can't just pick and choose which ones to take in a misguided effort to try and control your disease. My pituitary quit after my tick bite and this is something I know. If you do not have cortisol on board you could die. Lack of cortisol leads to muscle weakness and fatigue. If you do not have adequate growth hormone, your body will not process cholesterol well and the damage occurs over a period of time. Ever hear of fatty liver and fat plaques in your arteries? Do what your doc has ordered and take what was prescribed. Your thyroid is enlarged because the gland is failing and a few remaining cells that are active are trying to do the function of the entire gland. They swell and form goiters. All hormones potentiate the others and you need to take them all to feel well. Most hormone disorders are diagnosed on the pathologist's table. Stop monkeying around. Post me if you have any questions.
Posts: 482 | From Oregon | Registered: Feb 2011
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posted
This all takes time. You don't always feel better right away. You have to keep doing all the treatments, hormones, adrenals, and thyroid and stay the course.
This is a marathon, not a sprint. You didn't get out of whack overnight and it will take time to get back into balance.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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AuntyLynn
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posted
Two weeks of any hormone OR thyroid treatment will not make any noticeable difference in anything! Your body did not get to this point "overnight" and your physician cannot bring it back to normal overnight either.
Be patient. You will need an absolute minimum of two months - again, Minimum - to feel anything!
Count yourself as very lucky to have access to this kind of specialized care.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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sparkle7
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I think it's useful to be skeptical of treatmets. Not everything works for everyone.
I did some bio-identical hormone therapy & it didn't help me. It's expensive & wasn't all that useful for me. I think I did it for about a year - so, I did give it a good try.
Maybe, ask your doctor how long all of this will take before you start to feel any results?
I prefer working with herbs as opposed to bio-identical stuff. I studied it for a bit & I wasn't convinced that it was much better than taking synthetic hormones. There aren't alot of long term studies about any potential adverse effects from the bio-identical hormones.
There are many herbal preparations that have been used for centuries for hormone balance. I'd rather go with that.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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posted
PS - just because someone is famous doesn't mean that have all the answers... Just my experience.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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AuntyLynn
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Yeah, most of the herbal preps for hormone replacement were a complete WASTE of money for ME! It wasn't until I found some over-the-counter bio-identical Estriol cream that I started to get some results!
But to each her own.
As for safety on bio-identicals? Plenty of studies have shown that they are far safer than standard HRT! When chemists "twist" Mother Nature's formulas, so as to gain PATENT RIGHT$ one might reliably expect some problems!
The Women's Health Initiative demonstrated that, contrary to manufacturers' claims, pharma's HRT products actually increased the risk for stroke and heart attack.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
There are some adaptogens that help stimulate the body to make the hormones it needs.
Pregnenolone is one of those as it helps the body make estrogen, testosterone and also helps the adrenals. Tribulus stimulates testosterone production. Maca also helps with libido.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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AuntyLynn
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posted
Maca is said to be effective for libido - it simply gave me terrible gas.
beaches
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posted
I'm with you Aunty Lynn. I can't wait to get back on those bioidenticals (hopefully very soon).
That crap Premarin (aka pregnant mare's urine) gave bioidenticals a bad name, eventhough the bioidenticals weren't even part of that Women's Health Initiative study. But that study sure did scare a whole lot of women and their docs.
Sparkle, I agree that it's always a good idea to be skeptical about treatments. I'm not aware of what herbal products help hormones. I'd appreciate a few names, but nonetheless I am determined to get back on the bioidenticals.
Posts: 1885 | From here | Registered: Jul 2012
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posted
you may all be right but right now its a mess. im treating my thyroid since 2004. my thyroid was shrinking to the point where it was very very tiny. at the same time i had enlarged lymph nodes and i felt really super monster sick. this is the point where i could never tell if its lyme of thyroid or both.
from the day where i started hydrocortisone for my horrible fatigue my muscles got worse. this was the point where i knew something is wrong with my testosterone, because HC can tank testos in men.
point is, i treated my thyroid now for a good 8 years and the doctors always told me my dose isnt too bad. but the truth is the blood tests dont show how much hormones your body actually uses, so mostly feel better first and then i get worse again. its very difficult for me. when i read these thyroid stories i sometimes think that everything is hormones... on the other end of the road is lyme and coinfections.
so when i use ABX, my body temperature goes up and i will get very sleepy and sometimes i get reactions that could be herxing. the thing with the body temperature is something that tells me i have a big infection load.
i also was at a bioenergetic doc and after the treatment my thyroid went crazy. i got hot and cold flushes and had a lot of energy because i felt like my thyroid was working again or was starting to make more hormones again. this did only last for a couple of days.
now to the current treatment... the doc told me my thyroid dose and my hydrocortisone dose was pretty good. this is all labs. not to mention i did the hydrocortisone and thyroid myself.
so he put me on: testosterone, pregnolone, growth hormone, uppded to hc dose to 35 and some florinef. right now i just feel worse on it. neck pain is worse, mood is crap, i cant sleep and stay up all night (whenever i take the hormones i just dont have the desire to sleep at all)
the abx seem to interact with my hormone system. i just hate all this its so confusing. for sure i can stick 2 months with this treatment but right now i have all reasons not to believe in it.
and this is the point where i ask myself if its not all lyme related. because my body temperature goes up and i have a general feeling of relief on abx (when i start them)
sorry for the confusion but this is really so so complicated. i wish i could say something a 100%
Posts: 141 | From cali | Registered: Nov 2012
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sparkle7
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I don't know the answers. We all have very individual & complicated problems. The tests are not accurate - from the hormonal stuff to Lyme & company.
I got tired of the doctors & took matters into my own hands. I had an extremely low growth hormone level but my doctor refused to give me growth hormone. I ordered the tests myself & ordered the GH from a collective in CA who works with hepatitis & AIDS people. I tried it for a while. My levels on my tests got way better but I didn't feel any different.
I haven't taken anything for growth hormone in a while. I don't know why it was so low or if there's anything we can do to help it or if it matters for me.
I was on birth control since my periods were so awful. I was having side effects like I gained alot of weight so I stopped & was given bio-identical cream. I was glad to be off the birth control but the bio-identical cream didn't help or do anything for my cramps.
I can't say what to do for thyroid. I don't think I had a big issue with it. I started taking a Lugols type iodine & it made me feel better. I'm taking Magnascent iodine now.
I don't think I have alot of thyroid problems but I was given some bio-identical thryoid stuff a while ago. I think the iodine was just as good if not better for me.
I just started going through menopause. I started getting hot flashes & aching joints. I'm taking black cohosh & vitex. The vitex really helped with the hot flashes. I'm not sure what to do about the aching joints.
There aren't alot of definitive studies about Maca. It's mostly a food used by people in Peru. Black cohosh does have alot of studies about being helpful for menopause.
There's something about the hormone changes women go through & these pathogens we may have. I read a huge number of reports about how so many women get aching joints at menopause. Many think it's fibromyalgia & don't know what to do about it.
I read that the liver is responsible for estrogen balance - you can try working on the liver if that is a problem. I don't know the connection is between the pathogens, the excess hormones we are being exposed to & other factors that wake us feel ill.
I really studied bio-identical hormones. I wanted to learn at the time if they were actually safer than the synthetic ones & I couldn't find any long term studies. This was a few years ago. I don't have all the references right now. This was enough for me to not want to go back on them.
It may help people & I may change my mind but for now - I'll try the herbs. Sometimes, I think all my suffering would have been eliviated if I just got my uterus removed. This was suggested to me by a female GYN when I was 20.
It's kind of an outrage to have this diagnosis for something like menstrual cramps but at this point - I suffered for alot of years with extreme pain. I don't know if going the "healthy" route is always best.
We just have to do what we can to get through it. It's just you don't want to get worse from following some doctor's "textbook" advice & find out later that it was the wrong thing to do. They do't always know.
I try to do the most simple treatment that I can.
It's trial & error. We can't always assume that it's Lyme that is making us ill, either. There are millions of things that can be effecting our health.
I hope you can find an answer Indica440.
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Catgirl
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I love your posts Sparkle (very informative/great advice).
I recently saw a Dr. K practitioner who put me on iodine. I feel much better on it. But some days I don't test that I need the one I was put on, yet test positively for an alternate one, so I take it instead.
Lyme hits the endocrine system hard. Unfortunately, I think the lyme docs (and every other doc) really don't know enough about treating it.
Sparkle's right, we just have to do what we can to get through it. I like trying a simple approach (trial and error). I do think we know our own bodies better than any doc. Follow your gut.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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I was told to stay away from iodine because of the hashimoto thing. I was on iodine in 2004 and it made me feel worse. I was searching for something that would help me for a long tim.
Thing: whenever i had a flu or cold i felt SUPER good. with fever even better. so i suspect lyme and coinfections. in my caso also CPN.
For me T3 had a major impact on my well being but the effect never lasted. Some guy once gave me compounded time released T3 from Canada and it made me feel a lot better. I felt incredible good for some time but it just would not last.
Ive read that people with lyme have the best response to T3. I did not have too much luck with ERFA. It makes me feel a bit better but thats it. The synth thyroid meds just make me feel angry or overly stressed out. If i add hydrocortisone to the synth hormones i get neck pain and i feel horrible.
For my lyme is the most realistic thing because i grew up in an epidemic area. I was an outdoor sports freak. I had a lot of ticks. I have lyme in my body a 100%. I had heavy metals in my mouth when i was a teenager. Not too many but i had them. I feel my body temperature goes up when i take abx. My illness came overnight and hit me so hard it was insane. When u have both, endocrine and lyme its really hard what is what. I cant trust my gut because my gut tells me something else everyday.
Sparkle i agree with you but with lyme its always the doctor that matters. When there are no accurate tests you simply have to try. I was put on mono antibiotics in the past. Whenever i tryed tinidazole i felt horrible!!! So is it a side effect or a herx? I will recheck the lyme with my new lyme doc. He is one that healed many patients. I think hes a bit like burrascano when it comes to ABX.
Im will stick with the hormone treatment so far. Growth hormone is for sure low in chronic lyme and coinfections.
Posts: 141 | From cali | Registered: Nov 2012
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sparkle7
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It sounds like your case is alot more complicated that mine, Indica. I think the iodine is good for people who don't have big problems with thyroid. I haven't studied it that much since it wasn't a huge problem for me.
It is complicated. From what I have observed, the people in CA (if that's where you are located) seem to be alot worse than the East Coast people. I can't say that it's a fact but I've known of some people in CA & the West Coast who are pretty severely effected.
Maybe it's the pesticides & the strains of Lyme & co-infections that are out there...? CA grows alot of food. I'm sure the run off chemicals are in the water & air. These things can be endocrine disruptors.
(Thanks, Catgirl.)
I went to another doctor & he gave me a prescription for growth hormone. By then, I don't know if I still wanted to take it. It's expensive & there were some problems wth China & drugs back then. I think alot of it comes from China. I didn't like taking something that had it roots from other people's bodies. I'm sure it's synthetic but at some point, I think it comes from dead people. Who knows what goes on in China - that was around the time of the melamine scandal.
All we can do it try things & see if they help. With the endocrine system - it's complicated. All of the glands are connected. I think you have to study the bigger picture but it takes time.
If you are getting feverish - it might be the hypothalamus. I do think fibromyalgia & Lyme can be separate illnesses. People with fibro often have glandular imbalances. Probably true for CFS, too.
One doctor did an important study of hidden lung worm & CFS - there was pretty big evidence that they are connected. So, it might be a parasite issue, too.
I believe that parasites can effect the hormones. Have you tried that route? It's kind of controversial but the parasites are being found in people/kids with autism. Don't ask we why we are being effected with these parasites so severely. Not alot of doctors are taking notice but more are starting to recognise it as a big thing.
I'd have to study all of this further. It's alot to learn about. The endocrine system is complicated. Parasites are worth looking into - just to rule them out, even...
Sometimes, we need outside help. It's not a bad thing. I just haven't found many doctors who knew what they were doing. I spent alot of money of people taking educated guesses. I can do that, too.
Some of them were getting kickbacks from the drug companies... Bio-identical hormones are a big business, too.
I would say maybe work on the parasites, try to eat organic foods & have a good diet, drink pure water... These things can't hurt. If you have a deficient hormonal system - I don't think throwing hormone replacements on top of it will help. That's probably why the T3 you took didn't work after a while.
You have to try to find things to get your strength back (hormonally - that is). It's hard when you are being attacked by pathogens, though.
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sparkle7
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The hypothalamus helps control the pituitary gland, particularly in response to stress. The pituitary, in turn, controls the: Adrenal glands Ovaries Testes Thyroid gland
The hypothalamus also helps regulate: Body temperature Childbirth Emotions Growth Milk production Salt and water balance Sleep Weight and appetite Causes of hypothalamic dysfunction include: Anorexia Bleeding Bulimia Genetic disorders Growths (tumors) Head trauma Infections and swelling (inflammation) Malnutrition Radiation Surgery Too much iron The most common tumors in the area are craniopharyngiomas in children.
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