Anyone Else Have Problems With Hormone Replacement???

[CharmedLinz]

Been away from the forum for awhile. Still reading, just not posting.

Huge long story but my health is declining rapidly. My case is currently being evaluated by the Mayo Clinic in Rochester to see if they will accept me on a Research basis, but it's not looking good.

My Doctors here are all at the end of what they can do, all 8 specialists and another few who I no longer see. They all just keep saying I'm too complex for here and need to be seen at the Mayo. I need them to sign a petition!

Anyway the main thing now other than the Dysauto, most of the Docs agree that it looks like I have PolyEndocrine Failure, they just aren't able to give a 100% diagnosis here.

Basically all of my Endocrine system is shutting down little by little, and I have a million little things all pointing to other autoimmune problems.

Right now though I'm wondering if any other Dysauto people have any problems with Hormone Replacement???

I seem to be unable to absorb Estrogen correctly and though I have Adrenal Insufficiency and NO Progesterone every time I try to take meds for it I have an extreme stimulant reaction.

I've talked to an extremely knowledgeable bio-identical hormone Pharmacist who has gone over the Steroid Pathways with me and while she's sure that I'm not absorbing things properly she's not sure what it's due to.

She decided to have me try Pregnenolone instead of Progesterone or Cortef since the Pregnenolone will get changed to whatever I need it to be in my body, tried it the last 2 days in a small dose of 10mg. and I really don't think I can try it even once more.

My Cortisol is in the toilet, was 1 after surgery in June, up to 4 a month later, and 8 recently. All my Docs, especially Cardio want me on 20mg a day of Cortef, but I can barely tolerate 2.5mg in the morning.

Could it just be the screwed up Feedback Loop from Dysauto that just can't handle the hormones???

Could it be the Mast Cell Stuff? I know I have a Mast Cell Problem, docs just aren't sure what type exactly.

I seem to have the most bizarre and severe reactions to small amounts of just about anything.

Except for Sedatives and Benzos and things that affect the nervous system. Those I can take in horse size doses, almost literally.

They couldn't put me out enough with Versed for a colonoscopy, was awake for the whole thing.

For my Hysterectomy the Anesthesiologist (spelled wrong i know) was awesome and knew more about Dysauto than anyone I've seen. He also said it took a lot more than normal to put me out.

For the Dentist, 30mg orally of Valium just barely takes the edge off and I'm able to walk out completely fine, they just can't believe that I'm not the slightest bit tipsy from it afterwards.

I barely have a reaction to my daily Klonopin (0.5mg time 3/day) and barely any reaction to constant antihistamines for the Mast Cell.

So is this the Feedback loop reacting wrong, or the Mast Cells over-reacting, or is the Neuropathy just affecting everything???

Anyone have any input or suggestions or have similar problems with Hormone Replacement?

Thanks in advance!!

[targs66]

Unfortunately, I can't really help with your technical questions, but just wanted to say I seem to react the same way that you do to meds. I take very low doses of estrogen b/c I had a total hysterectomy at age 46 (about 3 years ago). Many of my worst symptoms started after the hysterectomy. I've tried to "balance" the estrogen with progesterone, and found that I couldn't sleep and was very "weepy" and depressed. I've also tried to stop taking the estrogen, but the depression, anxiety and sleeplessness are devastating. I do think there's health benefits from the estrogen, especially b/c I was pre-menopausal when I had my hysterectomy, but sometimes think my body doesn't utilize itcorrectly.

I'm sorry - that doesn't offer any answers - but just wanted to say I could relate to your problems!

[gertie]

I have never been able to tolerate hormones. I tried the bio-identical ones & they also caused me to have seizures. I've had a severe reaction to every med I've ever taken except Neurontin & Ativan. They are the only things I can take for my migraines & seizures. I don't know what I will do when I have to have an antibiotic. I'm sorry I can't help you but you're not alone.

[CharmedLinz]

Thank you both for your input, it's very much appreciated!

Nice to know I'm not the only one who's body doesn't seem to like hormones.

I just wonder what exactly it is that causes the problems. The Mast Cell stuff or the Feedback loop stuff....hmmmmm

[issie]

I had a complete hysterectomy at age 36 - one reason being endometrosis. This was my 8th abdominal surgery. I had issues with replacement hormones too. I wasn't to take any for 6 mo. - but only managed to hold off for 5 mo. Then I tried the traditional RX's. All were horrible for me. I tried numerous compounding pharmacies and have found one whose compounds work for me. I have problems with my liver and was told to delete the estridol and only use estriol. In Europe, I understand, that this is the form most often used. It is supposed to help prevent breast cancer. I could not take progesterone - it GAVE me hot flashes and it was horrible for me. I can't take prenonolone either - I don't convert it right. My body doesn't process hormones correctly either. I know one issue is with the P450 liver pathway - it doesn't clear right. I had read that there was some sort of connection with progesterne and some type of connection with one of the things we were discussing with POTS - can't remember the connection.

If you'd like the name and number to the compounding pharmacy PM me. The estriol transdermal along with Red Clover has almost totally balanced me out in regard to hot flashes. The only time I flash now is when I have an allergic reaction to something. I have probable mast cell issues too. There is a study now trying to connect endometrosis to mast cell disorder. They think the lesions and spots could be mast cell tissue (or something to that effect). Any way they think there is a connection. I'm not having all the issues of hormones since I found this combination. I also, cannot use soy or flax. I think they may imbalance my estrogen to the balance of other things (Just a theory). But, they will give me hot flashes too. I have to read labels.

Hope this helps a little. I'm one of those complex cases too. Maybe we should both be in the study. Doctors don't know what to do with me either. I can't take meds either. Haven't been at all sucessful. I have HyperPOTS and tend to have higher bp's. Mayo hasn't come up with a solution for me - so I hope you have more success than I have had.

[targs66]

hi all -

Thanks for the info, Issie. I had the same problem with progesterone - seems to make my menopausal symptoms worse. After reading up on it, my (probably over-simplistic) understanding is that with some people your system can only process the progesterone, which it does at the expense of the estrogen. Therefore, the more progesterone you take, the fewer benefits (e.g., preventing hot flashes, etc.) you get from the estrogen. I believe it's got to do with the HPA axis, but it's well beyond my understanding.

I've always wondered if that's one of hte connections to dysautonomia - I think all those crucial hormones (the sex hormones, as well as the thyroid ones, and cortisol, etc.) are not being "processed" by my body correctly. I've tried thyroid and cortisol medications of every description, and those seem to be the ones that make me the most ill.

Sending you a PM - I'd like to know the name of your doc. thanks.

[Sallysblooms]

It is all dependent on the doctor and the knowledge of hormones and supplements. The blood and saliva testing etc. also.

I get blood testing twice a year and saliva testing to keep levels good. I take bioidentical Tri Estrogen, Testosterone, Progeterone gels and Thyroid and cortisol all coumpounded. Also Pregnenalone and 7 keto DHEA.

I had a total hysterectomy four years ago. My reg. GYN that was the surgeon was clueless, just gave me a Climera patch. I was so ill, in fact, I blame my POTS on the lack of hormones. I know hormones affect it in the young a lot.

It all comes down the getting the levels correct and using all of the hormones that work together. Not many doctors really know how to do it sadly.

[gertie]

I had less trouble with the estriol. I believe that is the pregnancy hormone. I had hormone testing done a few times but I could never tolerate any of the hormones. Dr said some people are just super sensitive to them.

[issie]

I've always wondered if that's one of hte connections to dysautonomia - I think all those crucial hormones (the sex hormones, as well as the thyroid ones, and cortisol, etc.) are not being "processed" by my body correctly.

I question that also. In fact, I asked the Mayo docs about there being a connection and no one even tried to answer me. I've had to take cortisol before and have to have it with every surgery or my body crashes. I've also had to take thyroid in the past - they said I had a conversion issue between the T4 and T3. I didn't really find that it helped that much. It never brought my body temp up. For thyroid, have you looked into kelp as a natural iodine. Sometimes thyroid dysfunction can be from low iodine. There are also thyroid and adrenal glandular that people swear by. Just thinking out loud.

[CharmedLinz]

Thank you all for the input.

So nice to know I'm not alone in this department either.

Had an appointment with my Allergist on Thursday and asked him about all of this and if the Mast Cell stuff could have an effect.

He said he would do some research about the HPA axis stuff. But he did know that there are certain allergic reactions that can happen because of unbalanced hormone intake.

He said more often then not for people like the above if they get off of Estrogen and just take Progesterone the problems subside. But in his words (love him), "this is easier said than done". Everything has a catch, good and bad to everything we stick in our bodies.

[issie]

He said more often then not for people like the above if they get off of Estrogen and just take Progesterone the problems subside. quote]

I tried just the progesterone and it gave me horrible hot flashes and migraines. It did just the opposite of what it was supposed to do. I don't know why - but it did. So, just shows what will work for one won't work for another. With having had endometriosis - the thoughts were an imbalance between estrogen and progesterone. I didn't know this BEFORE my hysterectomy - learned of it after the fact. So, when you are thrown into menopause in your 30's you have to use some sort of estrogen - be it plant (Red Clover) or compounded (transdermal) or maybe both.

[CharmedLinz]

Yup it's all very confusing and myself like you seem to have the exact opposite reaction to drugs than what is supposed to happen.

I think I mis-spoke by saying "the above people"..... I meant he said that when some people have types of allergic reactions to hormone intake that he knows of some people that in that situation getting off of Estrogen and strictly onto progesterone can right things.

Then again he also said he's heard of some people being allergic to progesterone. Unfortunately there aren't any tests to see if you are allergic to your own hormones....I asked! If only it were that simple.

I keep relating myself to a pet, I wish my body could say what's wrong with it exactly instead of keeping my head guessing. All I can say for now is that I take something and my body goes....."what am I am supposed to do with that?" So it rebels.

UGH UGH UGH

[andersondebra]

I have recently come off of hormone replacement therapy again b/c of not tolerating it, it makes my HR go through the roof and raises my BP to dangerous levels. I too have tried every type HRT other than bi-identicals. I need the HRT for several reasons, you see I had a total hysterectomy at age 26 when my uterus ruptured and fell on my colon, and two years prior to that my one ovary ruptured and needed to be removed. I had suffered through years of endometreosis that left everything damaged and I also have EDS, which is what my doctors think was the cause of the ruptures.

Anyway, I am now in my mid forties and I am suffering with advanced osteoperosis, and vaginal atrophy due to all the years without HRT.However, I do not suffer from hotlfashes unless I go on HRT and really do not have moodiness unless using HRT.

Many of you have posted on here that you have had bad problems to HRT therapy but you guys really have not said what your reactons were and I am curious b/c I want to know if they are the same as mine, so here are my symptoms, please tell me if they are ones that you suffer from too.

tachycardia

breathlessness (probably from the high HR)

hotflashes or bouts of severe sweating (not sure which it is)

extreme BP spikes (especially upon standing or getting physical)

Higher than normal BP and HR at rest

anxiety (could be - being caused by adrenaline surges)

Those that are on bio-identical HRT did you have atrophic vaginitis or just hotflashes? and if you had atrophic vaginitis did it get better on Bio-HRT? I have been told that bio-HRT is only good for the hotflashes and memory fog and moods, but does not work on atrophic vaginitis or osteoperosis, I am trying to find this out.

If you have had atrophic vaginitis and it got better on bio-HRT? what type of HRT mix are you using?

Does anyone know of a HRT physician in IL. around Chicago, Rockford or Northwest area of IL.?

Thanks,

Debra

[issie]

Debra,

Yes, that's what I use the estriol gel for to help prevent vaginal atrophy. If I don't use it - and I've tried not using it - this happens. It does also help my hot flashes. I've tried several compounding pharmacies and couldn't use them - but the one I'm using in NM is working for me. I use the gel vaginally and it works good for me. I had a complete hysterectomy age 36 and I'm now 51. So, this along with the Red Clover work good for me. I also take a supplement called EstroSense that helps to balance out the hormones and has DIM in it. This is the best solution I've found to date. If you want the phone number to the pharmacy in NM - PM me. They will send you some info and you can also talk to the pharmacist and he is a wealth of knowledge.

Issie

[targs66]

hi Debra,

Just to confuse matters, my body seems to react the opposite to yours! I take estrogen before bed because it helps me sleep, but I know I've taken too much when I get the following symptoms:

- waves of vertigo/dizziness

- very groggy and brainfoggy - I feel like I've been sedated

- very low BP and temperature (both run low normally for me)

- extreme weakness - I feel like I can't walk across the room

- nauseous

Given that, it seems that it would make sense for me to stop taking it altogether, but when I've tried to wean off it my anxiety, depression, irritability and insomnia go through the roof. Worst of all, I can't sleep - when I finally doze off, I'm woken up literally 15 - 20 minutes later by what feels like a massive anxiety attack. My heart feels like it's pounding, even if it's not going that fast, and I get mild asthma attacks. That lasts for about 40 minutes; I barely doze off again -- and then it starts all over. The "hot" part of the hotflashes (if that is what they are) is the least of the problems (I'm always freezing anyways) - it's all those other symptoms. I get so anxious that i think I'm dying, even though I can logically understand that it's just a panic attack. Add a sleepless night like that to my utter exhaustion, and it's living ****. Hence my continued attempts to balance my hormones with HRT - I really think my body needs to gradually wean off hormones over the course of many years like it would naturally (I am in sudden menopause b/c I had a total hysterectomy about 3 years ago). I've tried bio-HRT, but it's no better. I'm going to see if estriol works for me - maybe the estradiol is too much? (Thanks Issie for your info!)

I feel like I'm in a "****** if I do, ****** if I don't" cycle...