Rene S.

you have described me to a tee. even in the weight dept. it has been between 95 and 103F here and anytime i go into a building that has a/c i have to wear a jacket. i bring one w/ me everywhere. and the looks i get sitting outside the hospital on a bench w/ a jacket on in 103 degree weather. i also night sweat.

i do not have an answer (as usual), but wanted you to know i am w/ you in your pain and suffering.

take care of yourself and who cares what others think.

Sorry firewoman that you are going through this as well. My daughter just came home and wanted to know why the a/c isn't on. Why? Because I'm freezing! I know what you mean about people looking at you. I went down to get the mail and had on a long sleeve shirt while everyone else is in shorts and t shirts. Not this summer for me.

Ruekat, what exactly did you get ordered for the "full thyroid profile"? Some of the tests are very outdated even though they are still being used and if you have Hashimoto's then the TSH is useless.

Make sure that they've ordered a Free T3 (FT3), Free T4 (FT4)and the thyroid antibody tests: TPOAb and TGAb. And when you get your results back, please don't necessarily accept the Dr's opinion that your results are "normal". You Free T3 need to be at the very top of range, not just "in range" and your T4 needs to be at 50-80% or range. TSH is not an accurate way to measure thyroid function since it is a hormone put out by the pituitary, not the thyroid. The FT3 and FT4 are the thyroid hormones that are circulating in your blood and are what you need to monitor instead.

Your symptoms can be signs of Hashimoto's which include both hyop and hyper thyroid signs like weight loss and cold intolerance. Have you taken your temperature? Low temps are also a sign of thyroid disease.

I would strongly suggest you get your adrenals checked as well with a saliva test. You can order one online for around $140. A lot of your symptoms sound like adrenal fatigue too, which can go hand in hand with thyroid disease.

Here is a place to look for more info and additional recommended tests:

http://www.stopthethyroidmadness.com/recommended-labwork/

Good luck!

Hi. Thanks for the advice. Presently I'm awaiting test results on the following:

Standard TSH, Free Thyroxine, Heme Profile & Elect Diff, Comprehensive Metabolic Profile. This was infuriating to me as I went to one of the top hospitals and saw an endo whom I thought should have ordered more specific tests but his answers were if these are not normal then we'll pursue further. Grrr. These drs are infuriating, to say the least. I will mentioned the other tests when he deems to call me back with the results.

Yes, my body temp is low usually 96.5. I did look up Hashimoto's and it didn't sound like my symptoms. I appreciate you giving me another avenue to pursue.

I'm sure my adrenals are totally out of whack. Another thing the endo screwed up on.

Do you know whether or not insurance will cover the testing? I'd much rather start doing things myself. The endo's answer as to why I'm so cold was "you're too thin" (mind you he was at least 400lbs, not being mean, but honest). Well, hello figure out why I'm having trouble eating (getting full really quickly) and maybe things can be settled.

I wish I could explain this better. I seem to always feel cold or rather get a shaking shivering feeling all the time. Especially if I go from one room to another or going from upstairs to downstairs where it is a bit cooler and I get this awful bone chill.. I wish I could better describe it. It's about 75 degrees outside and yet I'm in a long sleeve shirt. This has been going on since I was diagnosed with dsyautonomia/POTS. And wow was it awful in the winter! There are times that my whole body just shakes and temors and my teeth chatter. And my legs seem so wobbly. I find the only way to fix it is to get under the covers while my daughter is looking at me like I have two heads.

People keep telling me it's due to the weight loss. My normal weight is 104 and currently I'm about 89lbs. Food has lost all appeal but I do force myself to eat but not enjoying it?? I can't believe that all this has occurred in a span of 8 months.

I also notice that when my b/p is higher, I shake more. And it seems the more I shake, the higher my pressure becomes. I know it makes no sense. I'm not currently on a bb so I can't blame it on that. The only time that I'm warm and comfortable is night. Many times I wake up sweating and I'll take my b/p like last night and it was 90/43. I know our b/ps are supposed to be lower at night but I do have high fluctuations during the day. I can go to 153/90 and then once evening hits, it usually subsides. Although the other night it was quite high.

I'm just frustrated and tired of running to drs and not getting the full understanding. I'm awaiting the results of a full thyroid profile, cortisol, etc. My TSH was fine the last time.

Another weird thing - my hemoglobin is about 10-11 (which I think is normal) but my ferritin level is only 8. Not sure if I'm supposed to supplment with Feosol since I'm post meno and don't know why my ferritin would be low. Grrrrr.

Sorry I know I'm ranting. If anyone could shed some insight I would be grateful.

Rene

Hi Cordella,

I so can relate and feel awful for you. I've had the same day. I feel like I have the strength of a weak kitten and my b/p has been horrid. I usually run high and was taken off of betas (now they think I may be having coronary spasms and they are debating on what to do). But My pressure at it's highest was 170/90 yesterday and then last night I could feel it plummet and sure enough 93/43! And I had dr's appt and she had taken my b/p 3 times in her office and got major fluctuations. I'm trying to find a great cardio because so far I've encountered duds. All I want is an ambulatory b/p monitor for 24 hrs. Does that sound too much to ask for?

Sorry about your ER visit. I've had more than my share and they all ask what do I want? Hello you are the drs you figure out what I need.

And yes, they hand you the normal ekg even though you feel like a truck has run you over.

Try to rest up. We're all here for you.

It stinks to feel this lousy.

You'll be in my thoughts.

Rene

Good to hear from YOU Rene~!

I too have been checking to see how you are doing. Were you taking the Clonidine every day..all day long? I only use it as a PRN though told it can raise BP I should watch the BP. Its been fine and only needed it a few times anyway. I think if I had to take it ALL the time..I would be reacting more..like you.

Your symptoms warrant that you take it every day then?

Sorry about your reaction...dang.

Warmly Jan

Hi Jan,

Thanks so much for caring! Yes, I was to take it everyday. Two doses were enough. B/P went higher!

I stayed off Betas and for 2 days my pressure was nearly perfect but then I went totally tachy. Yesterday No tachy but high b/p. Grrrr. I broke down last night and took the smallest amt of metoprolol and it brought my b/p right down. I just hate the way the beta make me feel. I wish there was another med. He did mentioned mestinon (sp?) but said it would help with the tachy, not the b/p. Very frustrating.

I asked about starting just a "regular" b/p med and was told that since my b/p normally is low is am and pm that it wouldn't be the thing for me.

Hate being my own dr!!!! But we have to look out for ourselves.

Be well,

Rene

HI Jana,

I'm trying to be good! Not always easy. Some days are better than others. I'll email y

Hugs,

Rene

Sorry Bella!!!! Didn't mean to scare you. Well, Clonidine didn't go so well. My b/p remained high, I felt shakey and totally out of it. Oh well. I know, I'm bad in responding to your emails! I promise I will. Just alot going on here.

Sorry about what happened when you tried to go to the drs. I'll elaborate more when I email you.

Thanks for caring about me!

Hugs,

Rene

Thanks, Jana. I'm not sure if I'm going to give in tonight or wait another day. Why would something like a little pill scare me so much? I'm so intolerant of meds that I can't stand it. I wish I had a great dr that would listen to me and manage all of these things. The problem is, I don't. And I'm not an MD!

I hope you are doing ok. I posted to your post as well.

I wish you were here as well!

Hugs,

Rene

Thanks sweet Bella. You always know what to say. I'm still not sure if I'm ready to take the step tonight. I have no one around and yes my anxiety is getting the best of me. I don't have a great primarydr. so I don't have the ability just to call and say what I'm doing. The specialist recommended the clonidine and I'm not due to see him again till Aug. This is all so scary!

I'll let you know what I do/don't do!

xoxxo

Rene

Rene,

I don't have any experience with Clonidine, but I do know how frightening it is to start new medicine. Hang in there and make sure someone is with you when you take the first dose. For me, a little comfort and reassurance can help calm those nasty, scary feelings when starting a new medicine.

I also take metoprolol 12.5 mg 3 times a day and it does help my tachycardia. Did you wean off of it slowly? If you go off of it too quickly even when on a very small dose, sometimes you can have an exacerbation of symptoms. Just wanted to pass that on, too.

Sorry I con't help you more but know you will be in my thoughts and prayers tonight.

Babette

Babette, question about tapering the metoprolol since my cardio is an idiot. I was only on bbs for 2 months trying a few. I was taking 6.25mg of the metoprolol for about 2 weeks, then this week for about 3 days went to 6.25mg and skipped yesterday. Do you think I'd be better off taking the metoprolol at a bit under that amt every other day for a few more days? I'm so confused. And the drs. disagree with one another. I'm scared that I will have a heart attack or some weird arrythmia.

Thanks!

Rene

Thank you Bella, Morgan, Summer, whatswrongwithme, and ramakentesh who responded to my original posting about starting Clonidine. Well for the last two days I haven't taken my metoprolol (I was down to a pediatric dose of 6.25 mg) and actually my b/p has been lower off of it, but of course, when I stand my h/r now goes to over 100! It's amazing how small of a dose kept my h/r under control but not my b/p.

Anyway, I'm not sure what I want to do. I've read horror stories about the Clonidine. I'll only be taking 1/2 of a .01mg pill at bedtime only, but I'm wonderfing if this is what I need. I didn't have much faith in the dr and I know that this drug is supposed to be taken more than once a day and yet I'm to take it at nighttime only.

I'm scared that it may cause more palps, raise not lower my b/p and scared that it won't work on the tachy.

Please I know I'm asking alot, but any support or info would be so appreciated. I guess because I will be here myself when I take it scares me. That's if I take it. I'm still not convinced that it will help and it probably won't do anything for my PVCs or PACs.

Also, I checked on drug interactions and this is what came up:

"Clonidine/Beta-Blockers

This information is generalized and not intended as specific medical advice. Consult your healthcare professional before taking or discontinuing any drug or commencing any course of treatment.

MONOGRAPH TITLE: Clonidine/Beta-Blockers

SEVERITY LEVEL: 2-Severe Interaction: Action is required to reduce the risk of severe adverse interaction.

MECHANISM OF ACTION: Beta-blockers inhibit the vasodilation mediated by the beta 2 receptor leaving the vasoconstriction mediated by the alpha 2 receptor unopposed.

CLINICAL EFFECTS: Severe hypertension may occur upon abrupt discontinuation of clonidine in patients receiving both clonidine and beta-blockers.

PREDISPOSING FACTORS: None determined.

PATIENT MANAGEMENT: In a patient receiving both drugs, discontinuation of the beta-blocker prior to clonidine may decrease the occurrence of rebound hypertension. If clonidine is discontinued first, rebound hypertension can be treated by restarting the clonidine or by the IV administration of phentolamine, phenoxybenzamine or prazosin. When adding either of these agents to the drug regimen of the patient, monitor blood pressure. Since labetalol has both alpha and beta activity, administration of labetalol may prevent rebound hypertension in patients undergoing clonidine withdrawal, although conflicting reports exist.

DISCUSSION: Increased blood pressure has been observed in patients following: 1) the discontinuation of clonidine in patients receiving beta-blockers, 2) the replacement of clonidine therapy with beta-blockers, 3) the simultaneous discontinuation of both drugs. Conflicting reports exist on the development of increased blood pressure after clonidine withdrawal in patients receiving labetalol. Patients receiving labetalol who are being withdrawn from clonidine should still be closely monitored".

So, does this mean I have to wait till the beta is completely out of my system or that if I don't like the clonidine (if I take it!) that I have to wait to restart the beta? Scary!

So, I could use your help and advice!

Thank you all so much fo listening to me being neurotic!

Rene

Hi Jana,

I'm so so sorry for what you are going through right now. Please know that I'm sending my love and support your way.

Don't beat yourself up over not being able to do the things that David has done. I know where you are coming from, being alone with no help. And now you have the same situation. It's horrible but perhaps I can give you some sage advice. Many of the larger grocery store chains will deliver your groceries for a nominal fee.

What about friends and neighbors? I know your family is out of state and that's not easy.

The emotional state is brutal on you as well. Many men have been very successful in their treatment of prostate cancer. I have a feeling that David will be one of them! Keep up the faith and just remember, we're all here for you. Please call me if you feel like talking.

Perhaps if we put our heads together and along with the wonderful people on the boards, we can come up with a solution to help you get through this.

Love,

Rene

Well, I saw the POTS dr. today.Dr. Michael Goodkin in Media, PA. A bit disappointed. He only wanted to focus on the CFS and not address my issue which I feel are more dysautonomic. I'm so confused. I was complaining of weight loss, dizziness, tremors, etc. and he wasn't really listening. I told him that my pressure is on the high not low side but still did the poor man's ttt. He talked about adding Procrit eventually (not sure about that) but now he wants me to take Clonidine HCL 1/2 of a .01mg tablet prior to bedtime. He said it would help lower my b/p and h/r but not help with the palps! Grr. He said I could stay on the beta blocker but I can't stand the way any of them make me feel. Like my head's always on fire. He did mention that I could have the condition called gastroparesis.

He gave me the powdered substance called Corvalen which is Bioenergy Ribose. Supposedly it increases energy that FMS/CFS takes away from your body. Well, I'm already feeling like I'm speeding and don't one more thing that will contribute to that feeling.

He was talking about cranial therapy and recommended a dr. but one that does not take insurance. Forget that.

Has anyone ever taken either one of these two items? I'm just confused. He was a nice man but just didn't want to listen to my symptoms and kept saying that he's the POTS dr and that's all he does. He also gave me a book called "The Sinatra Solution". By Stephen Sinatra.

Indeed it was a very strange visit and I'm even more confused.

So back to my original question - good/back results with Clonidine?And did you stay on your bb or discontinue? He told me that since I'm on such a small dose of bb I can just stop. It doesn't sound right to me. Just don't know what to do at this point.

Also, I need to be re-checked for a possible pheo (blood and urine) but don't think I can do that if I'm taking clonidine. So, now I'm back to square one. I need to have something in my system until I do the testing. So frustrating. I hate the beta blockers, although now he said I could try Bystolic and today I'm sitting here thinking what do I do? I just edited this so now it's the day after the appt. I'm in a quandry and don't know what I'm suppoed to take until I can get the pheo testing done!

Thanks!

Rene

So Sorry that you are going through this. It's so hard in the middle of the night when everyone else is asleep and you can't think straight and there's no one to turn to. I hope this morning finds you better. Sometimes I can't remember what I said or did two mins ago. Scares me too!

Not being able to focus is horrible. And the feeling of detachment is the worst. It's like you're not in control of your thoughts or body.

I hope you were able to get some sleep. Perhaps you were overtired? That can cause alot of the brain fog.

Hang in there, we're rooting for you!

Rene

We were looking to move into Bryn Gweled, which is the Quaker homestead on the corner of Gravel Hill & Street Rd (for those not from our area, yes we really do have a road called Street Road... still makes me laugh when I see it). We've actually gotten halfway through the membership process at BG--but we want our house to sell before we go further. One of the reasons we liked it there was the community takes care of their members who are ill or elderly; Teri often worries that if I'm home alone and I become ill, that we don't have anyone close by to help me.

No, not a teacher--I'm a behavior analyst, and my area has been autism for the past 23 years. Most of my students are between the ages of 5 and 12 and all of them are in public programs. Keeps me busy and each day is so different from the one before that I can't really get bored.

LMK if you find any good doctors in the area. I haven't, other than my EP cardiologist, who is at Univ of Penn at the 8th and Spruce complex; and my Gastro, who is in Makefield. I have a good GP, ENT and GYN but they are all here in NJ. Actually, I think the GYN has an office in Langhorne too. I had a neuro who I used to think was really good, but he really let me down last year and I've since left his practice.

Nina,

Bryn Gweled is right across the street from me. It's on the same side as trowbridge, right? Small world. It's great that they take care of one another in sickness or old age. Here, people pretty much stick to themselves. Not always a good thing. My former house we all moved into the development together so we all kept eyes on one another. I miss that.

I've had it with drs. Can't find a good primary. I did have one until I got "sick" and she didn't know how to treat it.

Have you found a decent endo? I love my gyno but only see her once a year. I've been to a few EP cardios not impressed. The last one I went to was on Thurs and he didn't even take an EKG!

Well, I hope we become neighbors in the near future.

Nina, do you go to the schools or to the homes? I think what you do should be commended. It takes a special person....

I know, I've posted way too many times about BBs. I apologize. I'm so frustrated I don't know what to do. For the last week and 1/2 I've been on metoprolol at a small dose of 6.25 twice a day. It's sucking the life out of me. My legs feel like lead, I can't eat chills, and palps. Can't call my present cardio because he says it's impossible that on such a small dose that I could be having that type of reaction. Also, my b/p tends to run high not low. Only at night is it low.

I've been on atenolol (the longest at over a month) then tried propanolol (raised pressure) as well as zebeta (major anxiety). Now I'm supposed to go back to Pindolol but that also raised b/p. All seem to give a major headache and wipes my appetite out.

Yesterday and today I only took 6.25mg of the metoprolol hoping to wean off. I know, I'm not giving them enough chance, but the depression/anxiety, chills and palps are too much too bear.

Now I'm in a quandry as to what to do for tomorrow. Should I go back to atenolol since it was the one with the least side effects? Try the pindolol again? I've tried coreg, corgard with no success. This has been since Sept trying the different betas.

I feel disoriented and short of breath all of the time.

I know that someone on the boards takes more than one at a time.

I did speak to the specialist a fwe weeks ago that I'm seeing next week, and he said that betas may not be the answer for me. I tried to call him today but he's on v/c.

Does anyone here take pindolol (2.5mg) if they have high b/p vs. low? I always thought it was for low b/p.

Any suggestions as to what to do tomorrow? I'm afraid to just stop them because my b/p goes so high even though I'm on pediatric doses. I don't want to risk a heart attack.

Thank you all so much for any insight.

Rene

Nina, I'm right off of Gravel Hill Road in Huntingdon Brook. Moved here after my divorce, but was 5 mins away between County line and Street off of New Rd.

Small world. Are you a teacher? My girls went to Tennant prior to that Klinger and Stackpole.

Yes, you are so lucky having someone in your life. I hate being alone. Well, I have two cats but they won't be able to help in time of need.

Love for you to stop by sometime!

Rene

Thanks Michelle. I do appreciate your kindness and support.

Lots of hugs,

Rene

Bella, you are a doll filled with infinite wisdom. What a caring soul you are. Thank you a thousand times for your concern.

I have been through **** and back and losing my brother was the tip of the iceberg. I did have a major cry last night thinking that wow I'm no longer the middle child. The tears were endless.

I hope nothing but the best for you as well. You are too kind for words.

Thank you.

Hugs,

Rene

Hey there neighbor, sorry to say your experience is par for the course of what I experienced during my days before diagnosis in the same local area. I got labeled as an attention seeking patient who refused treatment for depression. Finally, I went and got a psychiatric eval b/c I thought, after being beaten down by docs for several years, "maybe I really am crazy and doing this to myself?". He was awesome... he wrote in my report that I was clearly physically ill, and that if I had any depression or anxiety, it would likely resolve once my physical problems were treated. I was so grateful to hear that and to know someone, other than Teri, believed me when I said "I'm not depressed, I'm just frustrated and tired."

I feel for you. Also, solumedrol will really mess with your emotional state--and your sense of hunger too. I'm an aggitated, cranky, ravenous nutcase when I'm on that stuff.

Nina

Hey Nina,

Where do you live?? I know you're not too far from me. Anyway you are right. They labeled me as a distressed, anxiety ridden depressed woman with no purpose except to disrupt their quiet hospital. And the nurses almost gave me double the amt. I still can hear and remembered the dr. saying 125mg of the steroid and they wanted to give me 250 and the benadryl after the test! Now what good would that have done????????

The only good thing to come from the steroid was an appetite which I haven't had in ages!

Glad that Teri is there for you. I have no one that will believe in this condition. Many of my friends have gone the wayside. This is life.

I'm just trying to figure out how long this shmutz will stay in my body. They say it leaves quickly, but then again they don't know me!

Rene

Thanks, Flop. Yes, I was manic, hyper, anxiety ridden and depressed. I thought I was going to come out of my skin. Today is 3 days later and I still am not back to feeling right. Is it because our systems are so sensitive? All of those drugs at one time no less!

Thanks for writing.

Rene

"5pm the admitting physician comes in and says that if I don't get my anxiety under control that my life will be ruined."

Really "Doctor" (make air quotes they love that) do you think so? I'd love the name of that book you read that came to that brilliant conclusion. Or was it written on the teabag you used this morning?

Grrrrrrr. In my mind I picture someone overboard in the ocean admist a raging storm, and another person on deck yelling down to them "Hey, if you don't stop that drowning thing your life will be over."

There simply is no "scared straight" tactic that works for systemic anxiety caused by an illness or reaction to meds. I'm so sorry you have to go through this. Hang in there ... you are doing an amazing job.

Thanks, Nan!

You are truly a remarkable woman. How I wish I had you by my side when I was read the riot act over the way I was behaving. Maybe if I had a syringe with 125 mg of solu medrol I could have shoved it you know where on the dr and then given her tons of benadryl plus a klonopin and a beta blocker. SEe how she would fare.

Rene

Thanks Jana. It's so nice to know that I always have your support and understanding. Everyone on the boards have been so nice and kind. It's ashame that the drs can't be the same.

Hugs,

Rene

I was given 3 80mg doses of solumedrol in a 24 hour period before my cath. It makes me less nutty than prednisone, but it still feels like a whole lotta adrenaline coursing through your veins. I remember when the nurse was pushing it in the iv, I felt like I was literally having panic injected into me. Pretty awful stuff. I crashed the next day, and took another couple days till I was back to normal. It played with my blood sugar and gave me blurry vision for a couple days and even made some old scars start to open up--with its tissue weakening properties. Muscle aches and tachycardic too. But it did pass.

Sorry for the ignorant doctors. It's infuriating.

Thanks! I know we had this discussion before when I had the cath but that was over a 24 hour period and it was prednisone. This I think was worse. I can't believe you mentioned the blurry vision! I can't seem to get my eyes to focus not to mention my heart rate and b/p is still elevated. My body feels like it's been run over once again by a mack truck! my heart took off as soon as they pushed that into the iv plus the benadryl!

What would be symptoms of blood sugar problems?

Thanks again for your response.

You guys are great!

Rene

Thanks, Jana,

You are so sweet and caring. It's ashame that drs can't be that way! Thanks for your support. I truly mean it.

I hope things are well with you.

Take care and we'll talk soon.

Hugs,

Rene