Dallas FFC/Hormones/Hospital/Low BP

Discussion in 'Fibromyalgia Main Forum' started by Connie3, Jan 30, 2006.

  1. Connie3

    Connie3 New Member

    I just do not understand what is going on with me?
    Started on Progesterone, Testosterone TRoche, and Estrogen cream about 2 weeks ago, but don't know if it had anything to do with the following:

    Last Thursday: trouble walking upstairs without severe shortness of breath and heart pounding.
    Last Fri: symptoms worse
    Last Sat: Husband insisted on taking me to emergency room. Tests showed 2.5 potassium level(very low) and BP about 82/56. Chest felt tight, light headed and shortness of breath.
    They admitted me to hospital and started me on Potassium and Magnesium. Potassium was by IV and oral. Got out today. BP very, very low. Finally got up to 92/57 today.
    Cardiologist did echocardiagram, xrays, and monitored the who time and felt that it is not my heart. Suggested anxiety could cause these symptoms.
    Internist baffled and thinks the low potassium is the problem. Took me off lozol(diuretic) that I have been on for 10 years. Also, put me on 1/4th usual dosage of tenormin which I was on for fast heart beat.

    Internist does not want me to take the progesterone from FFC because of clotting problem, and doesn't like the idea of the testosterone troche either.

    So I am home now and my heart feels like it is trying to get outside of my chest. I wanted so much to be able to take those hormones. And I still do not understand how this BP and potassium thing happened so suddenly after all of these years. I read somewhere on internet that lots of hormones can sometimes cause major electrolyte problems and I think this must be part of the problem.

    I am going through major personal stress right now and will start lexapro tomorrow. Now the slightest little upset makes me feel like I am having a major panic attack.

    It has been a strange past few days. Thanks to anyone who takes the time to read this. I just had to put it down in black and white. I feel alittle irrational right now.

    God's Blessings to All.
  2. Connie3

    Connie3 New Member

    I never knew about low blood volume and I have had a lot of blood drawn lately from internest in Dec and Jan, from rheumatologist in Dec. and from FFc in DEc. I bet that is the problem. What do I do about it?
  3. Sandyz

    Sandyz New Member

    I`m so sorry your having all these problems. I go to the Dallas FFC and have been taking the hormones but really haven`t noticed any problem with them. I would contact the FFC doctor as soon as you can and tell them what is going on. Maybe he can help figure out what is causing this.

    I don`t know what else to tell you except I`ll be thinking about you and praying that the doctors can figure out what is wrong. Try to get some rest tonite and let us know what you find out tommorow.

    Soft Hugs,
    Sandy
  4. dancingstar

    dancingstar New Member

    Hi Connie,

    I'm sorry that you are having such a tough time of it. I agree that you should call your FFC doc. as soon as possible and tell them what happened. It doesn't seem likely to me that the hormones that they use are what caused the problem.

    I sure hope you feel better and that things get less stressful for you soon. We all know how hard stress is, particularly for us.

    Blessings!
  5. Sandyz

    Sandyz New Member

    Hey Connie,

    Are you feeling any better today? I hope so. Let us know how your doing.

    Love
    Sandy
  6. dancingstar

    dancingstar New Member

    I have been giving this a lot of thought. Throughout the time that I've had this DD, there have been times that my blood pressure has dropped to 90/50 and I have been very weak. I don't worry much about it cause in my case my cardiovascular system is strong, and I know it, but sometimes I get so weak that I can hardly make it from room to room.

    Of course, this has nothing to do with your condition. I'm mentioning it for a completely different reason, because I have a wonderful internist. In fact, he is even holistic, an integrative medicine doctor; but I know that he will treat me in an entirely different way than Dr. Holtorf at the LA FFC will.

    Even though my internist is Harvard trained and I adore him, I've been sick now for four years; and if I were to be ill enough now to end up in the emergency room, at this point I'm going to call Dr. Holtorf first. He will be the one who will be most conscious of how to take care of me in light of the FM/CFS that I've been carrying around for the last four years. Oh, heck, in my case, I might call the both of them :)

    Thing is that I think that these FFC doctors get a lot of flack from the medical community for the way they treat their patients. Have you watched any of the seminar DVDs? The medical community hasn't caught up with them yet for lots of reasons that I don't want to go into right here, but mostly it has to do with money.

    I guess my point is that I really do think it would be a good idea for you to check with your FFC doc. It's likely that they will not agree with your other physician, but your other physician hasn't helped you to heal the whole time.

    I think it will always be confusing to all of us because we can't listen to both of our doctors if they strongly disagree with each other. They will definitely tell us two different things, and we need to decide who we want to trust with our health.

    I do completely understand why you are linking the incident with your beginning to take the hormones. Something definitely changed. Under any circumstances, you do need to get to the bottom of it so that you can feel safe going forward with any treatment, no matter what it is.

    I have a guess as to what happened, but since I am not in the medical community, I'm scared to give my opinion. Please don't take my guess as anything other than a guess. Is it possible that the hormones began to regulate your body, and you needed the diuretic less than you had in the past; so it was for the first time causing you to become dehydrated?

    If the doctor took away the diuretic and you stopped the hormones and you cut back on the other med that was regulating your heartbeat as well, I'm not sure that would be the best way -- well, could you call the FFC doc, please, and tell them what happened.

  7. Connie3

    Connie3 New Member

    What you are saying makes sense. My internist just has me scared about the progesterone and clots...but I am going to call the Dallas FFC and see what they think. I am not well enough to make the drive to seem them, but I will call.

    Thank you for this info. I value all of the opinions on the board and feel this is the only good help I have ever had for the DD.

    I'll update on condition.

    God Bless
    [This Message was Edited on 01/31/2006]
  8. elsa

    elsa New Member

    I hope you are feeling better ....

    Does your internist know that the progesterone you are taking is bio-identical and not the synthetic premarin-type?

    I ask this because the studies most quoted when talking about health dangers and hormone therapy were done on the very traditional and synthetic rx'es most use today. The bio-id's actually have protective benefits for us.

    I have taken compounded progest in the past .... no problems, just don't need it at present. I also inject testosterone 1xwk .... have since October. No BP issues with this either. I have to be honest, if some yoohoo MD tried to take my testosterone away from me he'd probably draw back a nub instead!! LOL ... Has been very helpful for me.

    If you are feeling up to it, read some of Dr.Chaney's research articals .... Low BP is very common with CFS. We can have problems when we first stand up like the previous poster said.

    Also, anxiety is very common .... if it is anxiety, then the bio-progesterone would be beneficial to you ... it's the body's natural "chill" hormone.

    I'm struggling at the moment, but some of our treatments can cause a drop in blood pressure .... we are often advised to take in salt ....

    Hmmm, the more I think about this, the more I feel it is related to you CFS/FMS illness itself. I think I would talk to my FFC doctor before stopping any treatments. As much as we love our internists, they have a good chance of not helping us ... or understanding the latest treatments. (I say latest yet many have been around for a couple of decades.)

    They just can't help it .... I also reserve judgement on any doc who won't take the time to educate themselves on bio-id's. As close as I am to the traditional healthcare community, I don't trust some motives sometimes .... I can't help but agree that money is involved ... but more from the AMA/FDA side of it.

    I hope you feel better soon. If you do decide to stop treatment ... try to back off of things slowly. That is several meds that have helped you greaty in the past ... but stopping all at once could be a "how do you do" to your system don't you think?

    Maybe think of posting directly to Tansy and Mikie about this. They are very educated on the subject and could possibly help you more with this ...

    Elsa
  9. bettydroop

    bettydroop New Member

    Did the Dr. give you Xanax or something? It could really help you in a pinch if you need it. What you are going through IS scary and you shouldnt have to go through it with out help. They could call that in to your Pharmacy if need be.

    OH I hope you feel better very soon!! You ARE a trooper.

    Bette/ Karen Z.
  10. Connie3

    Connie3 New Member

    When released from the hospital my blood pressure was slightly better and they did not tell me how to get up...just said it would take me a couple of weeks for my body to get better. They said to keep taking magnesium, which I have already been taking for 4 years. The BP was 114/80 at drugstore yesterday, so I guess getting off the diuretic and reducing atenolol to 12.5 has worked. But, I am still having such palpitations and tight chest symptoms. Maybe just stress!

    Thanks for caring! God Bless!
  11. Connie3

    Connie3 New Member

    I have xanax and have taken .5 at night with 50mg. traz. for years. The last couple of weeks, since having more palpitations and chest tightness, I have been taking 1/2 .5 xanax every 4-6 hours and it did not help at all.

    My BP is better and I started lexapro yesterday just in case it is stress related. I am going through alot right now. It just seems like the xanax would have addressed the chest symptoms if it was stress. While in the hosp. they gave me megadoses of potassium and maybe it will just take a while for my body to get back to normal.

    I just feel confused, but, at least I am better.
  12. dancingstar

    dancingstar New Member

    It is such a tough situation. I understand that your internist is afraid of clotting. Do you have a history of clotting?

    The reason that I ask this is because the natural progesterone should help you with the stress that you're feeling. Since I've been taking it in the evening, it's actually helped me fall asleep. It is naturally relaxing.

    Your internist is obviously concerned about clotting for a reason. I agree with the previous poster; I think that the FFC doctors need to be integrated into our regular medical programs. Our PCPs need to be told about them and about their treatments well in advance of any medical problems that we have, and phone numbers passed around so that if we get sick, they can coordinate care in the way that will be best for our health.

    I just don't think that all of us thought about how important this might be, but it's obvious that there are times when they need to communicate. In my own case, Dr. Holtorf gets the final vote even though I think very highly of my internist. He is also very kind, and I would never want to hurt his feelings. I would hope he'd understand that I'm doing this because I believe it is in the best interest of my health.

    Anyway, I'm glad that you are feeling better!!! Have you called your FFC doc yet?
  13. Connie3

    Connie3 New Member

    I had called Dr. Kippel at the Dallas FFc last FRi. before I went into hosp. on Sat. He said there was no way the hormones could have caused my severe palpitations and shortness of breath, but, if I had taken too much of the estrogen cream it might cause palpitations. He suggested I keep using the progesterone at night and leave off the estrogen cream and testosterone troche for a couple of days to see if it helped. He said to go to the emergency room if it got worse. So that's what I did.

    I haven't called him for the Dallas FFC since then. I feel so confused. My internist says even biodentical progesterone can cause clotting problems, but I have never had a clotting problem. His wife is an endocrinologist and I just assume he has more info than most internists, but I think I'll just do some more research on my own. I feel these hormones would really help me....my FM started after a complete hysterectomy 19 years ago.

    I started my estrogen cream again yesterday, but it has no effect on this tight chest symptom at all. I am doing better. Haven't been anywhere to check BP today, but chest is tight. Life is weird right now to say the least.

    I wish I were closer to Dallas and had all my doctors closer together. I also do not want to make my internist feel I am questioning his judgement because he tries so hard to help me. I am going to research this hormone issue and take info with me to my internist on Monday. Maybe he will change his mind if he has more info, and then I would feel better if he was in agreement. He is such a good doctor and I was really lucky to get him. Have been going to him for over 3 years and he took me as a patient as a favor to a colleague friend.

    Thank you so much for your help and encouragement.
    [This Message was Edited on 02/01/2006]
  14. Connie3

    Connie3 New Member

    Are you doing ok on the estrogen now? Are you also on the progesterone capsule at night and the testosterone troche?

    I would love to know if these hormones can really make you feel better.
  15. dancingstar

    dancingstar New Member

    Please forgive me, but I'm rolling on the floor, laughing out loud at this one. I just started using the estrogen, and I'm supposed to use 1/4 ml. Okay, so, like, that is nearly impossible anyway unless my math is as crappy as I think it is.

    Now, I've never gotten a hot flash in my life...never that is until now. Now is the time my body decided I should get hot flashes, just as soon as I'm supposed to use this tiny bit of cream. They told me to use more if I get hot flashes. (I'm laughing now) But how much more?

    I added a wee bit more, and so far everything seems just fine. I think the best part of taking some of this stuff, especially the cortisol, is that I have for the first time in years had the strength in my guts to stand up for myself. I have always been a bit fiery, but for the last few years, my adrenals have been so depleted that I feel like I've turned into a total whoos. It's so nice to have a little bit of spirit back, though I'm being very cautious about using it. No point in wasting precious energy.

    LOL I could so easily have done what you did!