I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Epoman on September 30, 2006, 06:41:00 PM
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I have been having low blood pressure. Anyone else have this problem? I have been as low as 84/60 pulse 60 I don't know if I am having heart failure or what. I have no Thyroid anymore but my TSH levels are not to bad a little above normal. I have not needed BP meds for like the last 6-8 months. And I am NOT below my dry weight. In fact I keep having to raise my dry weight since I have been on NxStage. Then I have been getting more irregular heart beats lately. I am worried. I have a appt to see the Cardiologist on the 9th of October. I had a Angiogram on May 2005 and they said my heart was good with ZERO blockages. I am just worried that my heart can no longer maintain higher BP levels.
For example an hour ago my BP was 84/60 now I just took and it is 113/82 with a pulse of 63 This shit has me so worried. I know that 113/82 is a good BP but how do you explain my BP getting as low as 84/60?
- Epoman
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...I have no Thyroid anymore but my TSH levels are not to bad a little above normal. ..."
What was it exactly on your last blood test and how long ago was it? If it's not less than .5 then the pituitary is still sending out TSH telling the thyroid to make more. You have no thyroid so it can't make any. You have to take more.
In order to determine how much more you need to take, you need to have the Free T3, Reverse T3, and Free T4 checked. It also is probably a good idea to have your adrenals checked and maybe sex hormones as well -- they all affect how your body uses the thyroid hormones. (Some people have a TSH less than .1 when they finally get the Free T3 and Free T4 into the upper third of the normal range where they should be.)
Also, which thyroid replacement are you taking? If it's synthetic T4 only replacement, like synthroid or levothyroid, then you probably need to add some T3 or better yet change to Armour natural thyroid -- it contains T4, T3, and trace amounts of T2 and T1 and calcitonin which helps prevent osteoporosis. Have you ever read the patient info on synthetic thyroid? One of the side effects is osteoporosis.
I had more than half of my thyroid removed about 20 years ago. After many years of normal TSH readings and severe hypothyroid symptoms I finally changed docs several months ago, had tests done the other doc had never ordered, and am now taking Armour, Adrenal Support, and some other supplements. My heart rate used to be in the low 60s and BP 105/65 or lower -- now heart rate is 76 to 80, and BP around 110/75 and my hypothyroid symptoms are going away!!
Check out: stopthethyroidmadness.com
Also, Yahoo has a thyroid group with lots of good info.
http://health.groups.yahoo.com/group/NaturalThyroidHormones/
The instructions on the yahoo group about switching to Armour Natural Thyroid are crucial if you make the switch. Most Docs do not know enough about natural thyroid (which has been around for about 100 years). Most docs will start you on a dose which is maybe as much as 3 or 4 times what your starting does should be, and will not increase the dose any where near high enough -- and you have to increase very, very slowly to give your previously deprived body time to adjust.
BTW, lack of thyroid hormones can cause heart problems.
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I have had this problem on and off for the past 8 or so months. My BP got down to 80/50 while I was on the machine. I assumed I was going flat, so to be safe I gave saline, paused UF and laid flat. After 200mls, my BP barely changed. So I gave another 200mls, again no change. There was no way I was going to sleep with a BP that low so I came off the machine and went to the ER. After this happening 2-3 times over a period of time, I was admitted and had a run of tests. Nothing showed up as being the cause. So I had to raise my dry weight 1.5kgs, and slowly over a week or so my BP came up. Then once it started getting on the high side I reduced my dry weight by 200ml each treatment until my BP was acceptable.
There really was no explanation for this, and it seemed silly to raise my dry weight that much, but it did make a difference. I have found on the long/slow dialysis you can achieve a lower dry weight as compared to a short treatment.
Obviously you seeing the cardio is a good idea, and hopefully nothings wrong. You could try raising your dry weight half a kilo and see if that makes a difference. Also as you probably know, don't eat a big meal prior to going on the machine, or whilst your on it. Since Ive been on nocturnal my BP has been good, and its easier for it to drop if I eat something too big, compared to before when it didn't affect me as my BP was high.
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It doesn't sound like the classic signs of heart failure.
It is quite possible to actually go a couple kilos under your true dry weight with the only sign being low bp.
You said you feel you are getting better dialysis since you have been doing it at home. Do you think its possible that you may be eating just slightly more thus gaining some weight?
I had a similar problem for a while and the doc recommend about the same as Amber_79 said. He suggested to come off heavy for a while until it corrected itself. It did but still from time to time my bp goes screwy like that.
I would suggest that you are able to use a crit-line or similar machine once a month to make sure your what your dry weight happens to be. Not sure how or if they can be done on your NxStage machine and it might require you to dialyze in clinic to use such a machine. :-\ Yes I know you no longer like that idea but sometimes you gotta do what you gotta do. ;D
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Apparently there is a little known side effect to long term dialysis which can be extreme low BP. I have suffered it for around 5 years now with your levels and lower. They put me through every test you can think of that can cause it and nothing was found. They prescribed a tablet called Midodrine Hydrochloride which did make a big differnece but over the last year or so I am having problems again. After crashing out on the machine with a BP level of around 40/20 I called my nephrologist as this scared me completely and I am going to under go the tests again. Apparently he thinks it is probably still down to long term dialysis but for everyone's peace of mind he is going to do them. I was really scared with these levels this week and fear one day I might not come out of them as that is extreme to the point of dangerous. But it seems that since starting Omeprazole and changing to Lansoprozole my BP has dropped and dropped and of course at low levels you can't get the fluid off despite a crit line proving it is there. :(
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...I have no Thyroid anymore but my TSH levels are not to bad a little above normal. ..."
What was it exactly on your last blood test and how long ago was it? If it's not less than .5 then the pituitary is still sending out TSH telling the thyroid to make more. You have no thyroid so it can't make any. You have to take more.
In order to determine how much more you need to take, you need to have the Free T3, Reverse T3, and Free T4 checked. It also is probably a good idea to have your adrenals checked and maybe sex hormones as well -- they all affect how your body uses the thyroid hormones. (Some people have a TSH less than .1 when they finally get the Free T3 and Free T4 into the upper third of the normal range where they should be.)
Also, which thyroid replacement are you taking? If it's synthetic T4 only replacement, like synthroid or levothyroid, then you probably need to add some T3 or better yet change to Armour natural thyroid -- it contains T4, T3, and trace amounts of T2 and T1 and calcitonin which helps prevent osteoporosis. Have you ever read the patient info on synthetic thyroid? One of the side effects is osteoporosis.
I had more than half of my thyroid removed about 20 years ago. After many years of normal TSH readings and severe hypothyroid symptoms I finally changed docs several months ago, had tests done the other doc had never ordered, and am now taking Armour, Adrenal Support, and some other supplements. My heart rate used to be in the low 60s and BP 105/65 or lower -- now heart rate is 76 to 80, and BP around 110/75 and my hypothyroid symptoms are going away!!
Check out: stopthethyroidmadness.com
Also, Yahoo has a thyroid group with lots of good info.
http://health.groups.yahoo.com/group/NaturalThyroidHormones/
The instructions on the yahoo group about switching to Armour Natural Thyroid are crucial if you make the switch. Most Docs do not know enough about natural thyroid (which has been around for about 100 years). Most docs will start you on a dose which is maybe as much as 3 or 4 times what your starting does should be, and will not increase the dose any where near high enough -- and you have to increase very, very slowly to give your previously deprived body time to adjust.
BTW, lack of thyroid hormones can cause heart problems.
WOW! Thank you so much for this reply, I have learned a lot. My doctor and I will definitely be having a discussion. I already have severe osteoporosis so that is the least of my worries. I have been battling this thyroid problem for a couple of years now.
My TSH level was 7.58 that was last week! I thought the normal range was like 0.50 - 5.00 or something close to that. My body is all out of whack my Hematocrit was 48 :o and retested was the same. I am now holding my Epogen. My crit jumped 10 points in 1 month with just 8,000 units of Epo once a week.
Thank you again for the wonderful, very informative post. :beer1; or :wine; your choice.
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It doesn't sound like the classic signs of heart failure.
It is quite possible to actually go a couple kilos under your true dry weight with the only sign being low bp.
You said you feel you are getting better dialysis since you have been doing it at home. Do you think its possible that you may be eating just slightly more thus gaining some weight?
I had a similar problem for a while and the doc recommend about the same as Amber_79 said. He suggested to come off heavy for a while until it corrected itself. It did but still from time to time my bp goes screwy like that.
I would suggest that you are able to use a crit-line or similar machine once a month to make sure your what your dry weight happens to be. Not sure how or if they can be done on your NxStage machine and it might require you to dialyze in clinic to use such a machine. :-\ Yes I know you no longer like that idea but sometimes you gotta do what you gotta do. ;D
Well I have always had a good appetite, but yeah I have been gaining weight while on NxStage. I have no edema on my ankles or anywhere else. It's really weird, I used to take of 4 kilos 3 times a week now I just take off an average of 1 kilo daily. BUT I still drink the same amount. :o
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...My TSH level was 7.58 that was last week! I thought the normal range was like 0.50 - 5.00 or something close to that. ... Thank you again for the wonderful, very informative post. :beer1; or :wine; your choice.
You are most welcome.
It often takes many years for the lastest information to filter through the medical community. :banghead; As you well know, the latest and most accurate information often comes from other patients before most of the docs hear about it. The 0.50 - 5.00 is NOT correct -- the "normal" range has been updated to 0.3 - 3.04, which is for people who have a thyroid which will react to the Thyroid Stimulating Hormone when it is produced by the pituitary gland. As I said above, if the pituitary gland is still producing TSH then it is trying to tell your thyroid that it is definitely not producing enough. Either you're not taking enough, not taking the right medication, or for some reason your body is not utilizing what you're taking. Most docs don't even know what tests to request to figure it out, :banghead; and most endocrinologists still follow what they were taught in med school years ago, or what the drug reps tell them; :banghead; so you'll have to educate yourself and tell them, or get lucky and find a doc that does know. :2thumbsup;
"American Association of
Clinical Endocrinologists
The Voice of Clinical Endocrinology® - Founded 1991
Press Release
January 2003
Over 13 Million Americans with Thyroid Disease Remain Undiagnosed
~January is Thyroid Awareness Month~
2003 Campaign Encourages Awareness of Mild Thyroid Failure, Importance of Routine Testing
NEW YORK - January 2003 - Did you know that 1 in 10 Americans - more than the number of Americans with diabetes and cancer combined 1,2, - suffer from thyroid disease, yet half remain undiagnosed 1? In order to counteract this lack of awareness and educate the public about the prevalence of thyroid disease, diagnosis, and treatment, the American Association of Clinical Endocrinologists (AACE) continues its annual thyroid awareness campaign. The 2003 campaign, Hiding in Plain Sight: Thyroid Undercover, launched today in conjunction with AACE's annual sponsorship of Thyroid Awareness Month.
New clinical guidelines published by AACE in November 2002 3 not only enable doctors to more easily identify patients with thyroid disease, but also provide treatment standards. Using a simple blood test called the thyroid stimulating hormone (TSH) test, any physician can determine whether someone is suffering from an overactive or underactive thyroid - in many cases, even before patients begin to experience symptoms 4.
Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range5 . Now AACE encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now. ..."
This website has some good info, but it's not the best source of info because they pay too much attention to what they hear from the drug companies selling the synthetic replacement hormones http://www.aace.com/
I cannot emphasize enough that you need to switch to the Armour Natural Thyroid. Just be sure you are knowledgeable in how to take it before you make the switch. Taking too much to start with, and increasing the dosage level too fast, can cause some really nasty side effects. But once you make the switch and get your dose adjusted to what you need, you won't believe how much better you feel. :2thumbsup; :clap; :2thumbsup;
:thx; for the :beer1; or :wine; but I'll settle for some good Southern Iced Tea with fresh lemon :lol;
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I have low BP before dialysis. Now I drop into the 60's/30's while on the machine. If I go lower then I feel it and know I will crash. Crashed, blacked out, totally immoble and that wasn't funny. I know my body and what it feels like when BP goes below 60/30. I can leave the clinic at 85/45. Just have to make sure my graft still throbs. This is the main reason I won't do home dialysis. Never had high blood pressure except when my kidneys first shut down. I would crash almost every treatment till I asked my nephrologist why I'm on high BP pills if they can't keep my pressure up. They took me off and I never had high BP since then, only lowBP. I'm a strange one they tell me.
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I have low BP before dialysis. Now I drop into the 60's/30's while on the machine. If I go lower then I feel it and know I will crash. Crashed, blacked out, totally immoble and that wasn't funny. I know my body and what it feels like when BP goes below 60/30. I can leave the clinic at 85/45. Just have to make sure my graft still throbs. This is the main reason I won't do home dialysis. Never had high blood pressure except when my kidneys first shut down. I would crash almost every treatment till I asked my nephrologist why I'm on high BP pills if they can't keep my pressure up. They took me off and I never had high BP since then, only lowBP. I'm a strange one they tell me.
LOL, I heard that myself SO many times. :thumbup; :beer1;
- Epoman
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I'm a strange one they tell me.
LOL, I heard that myself SO many times. :thumbup; :beer1;
- Epoman
Yep, he sure does, and how do i know you ask? Well, i know i personally tell him that at LEAST 10 times a day :P ;)
EDITED: Fixed quote tag error, n00b >:D - Epoman, Owner/Admin
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My dads blood pressure has been dropping during dialysis. He is on blood pressure medicine and the cardiologist said he must stay on it. The cardiologist said the blood pressure medicine relaxes his heart. I am afraid he going to crash. Does anyone have any suggestions??????
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I have been having lots of problems with my blood pressure recently. Right now as I type this I am feeling very crappy. I just spent about ½ hour with my feet up - that seems to be the only thing I can do when I am off the machine. They told me not to use salt since I have no way of regulating what I take.]
What I don't understand is that I arrive at dialysis with a picture-perfect blood pressure. The minute I get hooked and have my first reading, it has already dropped a bit. And that continues. Today I told my nurse to test my BP because I was feeling a bit funny. She said'but it is 130-80'. I said test it again - it was 90/41 . When I finished it was back to a good BP. Now I am home and I feel absolutely crappy. I can't spend 10 mins on the computer - I have to go back to bed for a while all the time.
I spent about 2 hours in ER last Saturday because of this and sometimes I feel that is the only place I should be when I am like this. I get scared to be at home. What do you guys think?
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Because you are still urinating, could they be removing too much fluid? Maybe if they adjust your dry weight a bit and see how you feel after that, either that or try not to remove as much fluid :twocents; I hope you feel better soon and they find what it is that keeps dropping it :cuddle;
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I hope your blood pressure straightens itself out and you feel better soon.
Amanda
xxoo