EarthMother

My own sense here is that illnesses like Cushings or Addison which are adrenal diseases ... are the ones that need to be taken into consideration when dosing thyroid meds. Blood tests like the ACTH push that endos do in order to test for Addison's would be one along these lines. "Adrenal Fatigue" is not a disease it is a syndrome (to my knowledge). Some Doctors or Naturopaths screen for this by simple saliva tests for cortesol as well as some blood samples. I have had my cortesol checked with these spit tests before ... (reminds me I have one pending from last month, I should check on the results) ... but no matter if it shows "adrenal fatigue" or not ... I would never let it interfere with my Hashimoto eatment. Letting Hashi go un treated will excaserbate adrenal fatigue.

I wonder if the liklihood of autoimmune as culpret in POTS is more likely in those of us with other confirmed conditions that are autoimmune ... e.g. Hashimoto.

{{{{gentle hugs of welcome}}}}}} You have, as you no doubt realize from reading the boards and the litany of information on the web site, a wonderful place to ask questions and feel supported within a community of people who understand what you are going through. I wish I had some wonderful words of sage advice, but really all I can do is nod my head and say ... Yes, that sounds about right. When I was in my 20's I noticed that my down time from POTS was less and I actually had several good months or even a few years here and there, when I didn't notice POTS as a significant symptom. Meals are also a challenge for me, as I tend to get post pranial hypotension. So to compensate, I eat several smaller meals every 2-3 hours -- with a protein, carb and fat combined at each sitting. I also find, for me, that my system just can't handle anything "heavy" in the morning. So I make due with some nutbutter on a cracker, or a slice of cheese with rice cake until I can eat a bit more later in the day. By evening I am often able to eat a larger meal. When I was able to work, dinner would be when I could really eat a full meal, because I knew I could go and lay down for a couple hours afterwards. When I was at work, I had to eat very light in order just to make it through the day. Are you trying any compression garments, salt, or meds that help some of the POTS patients? Practicing any of the countermanuevers when you stand up (like squeezing your legs together to help increase blood supply)? Do you have anything to help with the heat? I'd advise that you keep some notes about what seems to help. Over time these things may change. But occasionally you forget some of the tips you learned earlier on, and when you are reminded or review your notes you can try these out again. Good luck, finding things that work for YOU, and welcome again. ~EM

Saw an interesting article on new "drug" that may be available for auto-immune disease ... http://www.webmd.com/rheumatoid-arthritis/...immune-diseases Hopefully one day something will come up that will lead to some additional options for all of us! ~EM

I only have experience taking the synthetic thyroid meds ... but I've taken alot of them over the years. I know with the synthetics, the dosing is VERY VERY SMALL because the drug has a half-life that is really really long. But I think that's not the case with the T3 Armour ... Some people (I've read) take Armour twice a day because it is so rapidly processed in the body. So while it would be highly unlikely to notice a reaction from say Synthroid in a day or two or even a week ... it may be possible to notice a reaction to Armour in that amount of time. Good luck finding something that works for you. If you ever do decide to try synthetics again, you should note that there are several different brands ... and each of us react different to the different types. I had to switch from Synthroid to Levoxyl in recent years ... and before that it was the other way around. Unlike most drugs that the insurance companies can switch to generic or other formulary options, you'll find that thyroid drugs fall out of that catigory because it is so critical to be on the exact drug your doctor prescribed. Hope you find something that works for you.

Wow. Tough situation. First things first. Don't feel hopeless about what you can't do medically at the moment. Lots of us with access to meds and specialists found the prescribed treatments did not help much in instead we rely on self-help measures like support garments, high salt and others on the list provided on this website. Next, see what you can do by way of getting insurance. Do you qualify for medicare? or other program in your country? Meanwhile continue to knock on Doctor's doors in your area who will agree to see you given your financial constraints. If you find one who is willing to learn about POTS alongside you, then she/he may be able to help figure out ways to manage the cost of some of the meds. My memory is that betablockers as a drug class is not very expensive (unlike the $240 antibiotic my son was prescribed last month geez!) But betablockers don't work for all POTS patients. So keep calling around and don't give up until you find a physician or clinic who will work with you. Good thoughts your way.

The Hashi antibodies won't be found all the time -- only when its active. BUT they are not transient, in that you won't have them high in the morning and not at all in the afternoon. It takes weeks (my sense) for the antibodies to die down with each Hashimoto episode. But MomtoGiuliana is right in that the low thyroid could be producing high POTS activity so its hard to discern between the two based only on how you are feeling. My hashi antibodies tend to show up all the time we test for them. However my PCP and I don't tend to dose my levoxyl based on the antibodies like that article suggests. Though I may ask him to think about that possiblity with me because waiting out each Hashi attack is really hard. Left untreated, as some Doctors suggest, the scar tissue from the repeated attacks on the thyroid gland form the antibodies the body is making in Hashi, will slowly lead to hypothyroidism. Because it is a slow progression, some endos figure ... we'll just wait until the TSH is really high before we'll treat. What they don't grasp is that each of the Hashi attacks are really hard on the patient in terms of being highly symptomatic ... Small doses of thyroid, to only curb the TSH from rising, prevents hypothyroidism ... but doesn't quell the Hashi from flaring. Its only when you get those TSH numbers way way down ... to the point your body no longer needs to produce thyroxyn on its own, that the Hashi doesn't act up. The theory here is that ... if the body isn't producing its own thyroid hormone ... the body won't make antibodies to kill off the thyroid gland. It seems the chemical compounds in synthetic thyroid don't trigger the same call to make antibodies to attack the gland. That said, there are some hashi people who DON'T USE ARMOUR because it is too close to an organic compound and in their case the Hashi still gets activated and produces the anti-thyroid antibodies. In these cases the synthetic compounds -- synthroid, levoxyl -- are preferred. Its a can of worms. Sorry there are no easy answers. I've been searching for one myself for years as you can gather by the depth and breadth of my response.

Paper work is what it is all about. I couldn't have handled all of the red tape and requirements on my own without my husband's help. We have copies of all of the lab notes, hospital notes, doctor records and forms ... all scanned into the computer and filed. So that it is easier to pull together for various check points when things are needed. When I was filing out forms for long term disability whether it was private insurance from my employer or SSDI from the government, I would schedule an appointment with my physician or specialist so that we could review the forms together. I made multiple copies of the forms so that we could review them and then I'd pull out dates and lab tests so that the Doctor had all the information he needed to complete the detailed forms. I gave my Doctor's copies of my forms that I filled out ... so they understood from the surveys what my daily life was about ... i.e. can you wash your hair, cook dinner without assistance. My husband had kept copious notes during the last few years that I worked. So he submitted extra data about the decline in hours I was able to put in at the office. He added several paragraphs about his observations and what things he has to do for me on a daily basis. When the forms said you could use more paper if needed .... we used more paper and supplied as much information as possible for every facet of the illness. So often we try and put on a "good front" and try to maintain the illusion that we can do more than we are actually doing. It was really hard for me to see in black and white, what had happened to my life. But we were brutally honest ... honest, not exagerated. We didn't stretch the truth .. but we told the truth as it is. We gave examples of what I was able to do before the decline and what I am able to do now. We made sure to indicate that even though some of the tasks that I can do today, I will be unable to do the same thing tomorrow. Because there is an important issue of consistency that they need to apperceive. We just don't have the day to day reliability any more because of the Dysautonomia turns on a dime. Good luck. Don't give up. And try to be as organized and patient as possible. It is a roller coaster process .... try not to get caught up in the highs or the lows of the paper chase.

Has your endo checked for thyroid anti-bodies? I have Hashimoto thyroiditis and my hypo to hyper symptoms can change on a dime. http://www.stopthethyroidmadness.com/hashimotos/

Get a different doctor!! Sometimes endos are locked in, but you may find a primary care physician who is willing to try dosing with you. Thryoid hormone ... unlike other meds ... has a REALLY REALLY LONG half life. It stays in your body for WEEKS! So even on a tiny dose ... your blood levels are building up ... higher and higher each day over time. That's why it takes a full six weeks to establish a new dose level. It is such a tricky and delicate balance ... that my PCP and I were dosing one .88 pill on even days of the month and one .1 pill on odd days of the month all last year, in order to keep me in my zone. My zone by the way changed yet again, and presently I had to back down to just .88 daily. Thyroid effects SOOOOO many other hormones it would be so dangerous to try this on your own -- even if you did by overthecounter TSH blood tests to try and gauge your progress. Please try a new Doctor instead of experimenting with thyroid meds ... they are too dangerous to mess up.

Exactly! A couple of weeks ago I got the first "herold mark" -- but of course I had no idea that was what it was at the time. My two hairless dogs occasionally get ringworm, and so I thought I must have picked up something from one of them (though none of us ever had before.) Then those blotches came about a week later ... only thing that seemed outside of the "textbook" PR is that I am 46 and it says that it is most common in people under the age of 35. Thanks for the confirmation about the fatigue!

As each of us have experienced such horror stories in our medical adventures, I wanted to share what I consider to be the template for a perfect office visit. Truly this is the way we all should be treated. I went to my PCP this morning, because I developed a rash on my torso. I took copious notes on the timing of the symptoms, what came first, what followed, what I tried etc. And read through my paper along side my physician. He asked me a few more questions and then examined the blotches. When he said Pityriasis, I was soooo relieved. I had read about PR on the internet and knew that it was self-limiting and would go away on its own in a couple months. As he told me about the disease, I added tidbits I had read about. My husband commented how I had researched this over the weekend and my Doctor remarked "Good. That's a good thing. The internet is a good source of information." (I just have to pause and breathe deeply for a moment in recognition of how blessed I was in that moment.) Once we finished the rash-chat ... my Doctor poured through my electronic chart on his new high-tech tablet and asked me how my POTS was doing. I told him that it continues to be very rough and he made some suggestions about some things we had tried before that we may want to consider again. Basically he said, "I don't want you to feel like you don't have any options." (Again, deep breath and a moment of silence.) Fact is I may NOT have any options ... but just to know that I have someone on my team who is willing to listen, learn along side me and try ANYTHING that may help .... well that just feels about as good as it gets. On a related note, has anyone else had Pityriasis? I read somewhere that it may be linked to the HHV 6 (or 7) virus which is the one that is getting all of the hoopla about possible links to MS and CFS. I vaguely recall one of us actually being treated for HHV 6 I think, but I couldn't find it off hand in the search engine this morning. So that's my news for the day ... no bikini contests for me this summer!

There are a few different "standards" for TSH ... but most labs still are using ~5 as the upper limit. While many physicians respect that many of us do better at a 1 or a 2 when we are supplementing. I try and keep my TSH under 3, and my Doctor and I tweak my synthroid dose (actually Levoxyl in my case) if it seems to creep much higher. Did you ask your Doctor about a smidge of thyroid med?

I would probably walk away and not look back and spend my energy finding a Doctor that is a better fit for my situation. I have had lots of notes written about me that I disagree with in my medical file. But once I found a good primary care physician, it just didn't matter. After time, he came to see enough of me that he knew first hand who I was. Once when I needed to see another doctor on call in his medical practice, I was treated very rudely and this other Doctor put some notes in my file that made me look like a crack pot. When I next saw my regular Doctor, I told him what happened ... he read the notes ... and I asked him point blank "Do you agree with that assessment?" He shook his head, stormed out of the office right then and there to address the other physician on the spot. When he returned to the exam room he apologized on behalf of his colleague. Never before had I ever felt as validated and almost a decade later I am still blessed that he is on my team. Keep moving forward. When you find the right match, your new Doctor's notes will speak for themselves. Good luck, ~EM

"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.

I would be very careful about seeing this "doctor" again. Clearly he has a ego complex issue and in my experience these are the ones that can make life miserable if not down right dangerous for you in their misdiagnosis. We've heard stories on the boards about patients who's Doctors put down labels like epilepsy and they subsequently had their driver's license revoked. Having a red flag on your chart about mood disorder can risk you not getting the treatment you need, even if it is just antibiotics you require. I don't mean to sound paranoid (though I'm sure your internist would diagnose me as paranoid schizophrenic) but you may want to consider filing a complaint to his medical group. Who knows what he has written down and where that information gets spammed around town. I hope you can find a new doctor who can help you through the tuneups and general care needs.

EarthMother raises her hand up high! Yes please!! Can you explain a bit how to make one of these? If I saw one up close I may be able to figure it out. So if anyone has any tips/tricks, I'd love to take a stab at this as a DIY project. ~EM

I go through periods when this happens with greater or lesser intensity with POTS. My whole body can shake, my teeth chatter and I also would get those random arm jerks and twitches. One doctor who treated me in the hospital put me on anti-seizure meds last year because it was so pronounced. I felt terribly drugged and disoriented on the med ... and still shook. My PCP agreed to stop the trial. Eventually, when my body comes out of a peak hyperadrenic phase, the shaking seems to subside. This spring, even with my crash in April, the shaking doesn't seem to be an issue. Hang in there. Lots of breathing. And best you can ... let it pass through you instead of fighting against it.

I am 46 and perimenopausal. I had been on hormones of one kind or another (birth control pills or the Mirena IUD which is the same as a low dose BP) since I was 16 except for when I had my three children! After the Mirena I decided to try one of those year round low dose pills and then back to the old bp I used prior to the mirena. I was having horrendous hot flashes with the huge jolts of adrenaline all last summer even on the pills. So when my cardiologist suggested (insisted) I go off all hormones because of my age this past October, I was really concerned that the peri symptoms would get worse. But to my surprise the earthquake flashes seemed to subside once I was OFF the estrogen. No idea why. Perhaps it was a case of estrogen dominance. No clue. My periods are VERY HEAVY now, but really not much cramping and pain, like I thought there would be with a history of endometriosis. I still get an ocasional hot flash but nothing like last summer when I was taking the birth control pills. So for now, I'm flying solo and it seems to be ok. My PCP and I agreed to check my hormone levels once a year to see if we want to tweak anything as I continue to pass through menapause. But at this time my body seems to be doing what it was designed to do and it feels much better than last year, so I'm in a holding pattern until something changes. Good luck finding something that works for you ... for now. ~EM

I recall some 15 years ago ... Before they called it POTS ... a physical therapist at the hospital wrapped my legs in burn unit compression tube garments. I was AMAZED that I could stand and walk down the hall with these on. Another half dozen or so years later during another bad crash ... this time POTS had a name and I had a different name for the same condition ... and I used high compression thigh highs. They worked well for me and I used them often at work. However, by 2007 when I finally lost my job and was in another POTS tailspin ... the compression hose did nothing for me. I tried several brands, got the higher ones than I used to use ... and still no help for the POTS this time. I have never had any noticeable leg pooling, though I also look pregnant by midmorning if I have been up and about. Ab compression has always caused me discomfort (Pain!), that's why I used the thigh high hose. However, I do have a very wide velcro waist cinch ab device that I can easily adjust tension as often as needed, and I do tend to FEEL better when I am upright with it on. Without it, I tend to sit with my knees drawn into my chest. Strange how the leg compression helped before ... but doesn't seem to help now. I don't know if the high, normal, low flow POTS may change in one individual over time. Good luck finding something that helps you ... for now. ~EM

I thought about these a great deal last spring when I crashed hard, as I noticed I also felt a lot better with an oxygen tube up my nose. I tried those little cans of air ... never noticed any help. I'm not inclined to spend a lot of money (which is a good thing since I don't have a lot of money to spend!). But what I did notice ... for me (your mileage may vary) is that I also feel better when a fan is blowing HARD in my direction. I think its the forced air. Or maybe just something that is taking my ANS in a different direction. So now we have a bunch of little fans in various rooms in the house and when I start getting POTSY (like when I try and cook in the kitchen) I will squat on the floor with the fan blowing at me for a bit. ~EM

I can hear that you are reaching out and trying to help a fellow traveler here. But a gentle reminder, that not all of us are able to see POTS specialists. Nor have we found any natural remedies or medical treatments that seem to help our situation despite our best efforts. It was my understanding that unless someone has an underlying heart condition, I am not aware of any damage that can occur to a healthy heart by way of POTS. ~EM

We bought a one room air conditioner window unit for me last summer, so that we don't need to turn on the house AC. Saves us money on overall electric bill. But yes, it does mean I am confined to one room especially during the peak heat hours of the day! I carry a misting bottle with me anytime I go out. I just keep spritzing myself ... all the time. Sometimes we get those little mini battery operated fans that have the misting bottle attached. But those are kind of bulky and noisy and the batteries cost money. So I keep my little water bottle that fits in the palm of my hand and just keep spraying myself. When I'm having a big hot flash (ah the joys of perimenapause and POTS) I will sit on frozen ice packs or place them under the soles of my feet. I've not tried the cooling vest ... and by the price of it, its not likely I will any time soon. But I do have one of those aussie neck cobbers ... http://www.simplyoz.com/products/gifts__mu...obber_neck_wrap they stay cool for a long time and I use them at times as well. Good luck finding something(s) that work for you. ~EM

I brew up a pot of water, lemon, garlic and ginger with a bit of honey. The combination has good anti-viral properties. We all use it at the first signs of cold or sore throat. I also use Zicam (zinc in the nostrils) and it seems to help when I get a bug. Good luck finding something that works for you.

Sure thing. Weight loss CAN cause issues with orthostatic hypotension. Now ask yourself WHY did you have the weight loss in the first place! I've certainly had new doctors think it was the weight loss that caused the POTS. I'm fortunate that my current PCP has known me for 10 years and sees that my weight is actually pretty stable when I am not in a bad POTS hole. For me weight loss is one of the first signs that I am going down hill fast.