The Answer We Found Has Created More Questions

[momma]

hello everyone. my daughter was diagnosed with hypothyroidism caused by hashimotos in march of 2008. started synthroid. was feeling better within a month but never really the same. she started having episodes of severe stomach pain, headaches, nausea, fatigue, etc. we kept taking her to the doctor, who ran numerous tests and sent us to other specialists. everything came back normal. then the doc said it was probably psychological. i know my daughter and i knew something was very wrong but it was not in her head. i requested the doc refer her to mayo in rochester. we got an answer within 15 minutes of seeing the first doc there. autonomic nervous system dysfunction. specifically POTS. we were relieved to finally put a name on it. but it has raised more questions...

first how do you drink 2-4 liters of fluid plus all the salt you can stand when you are so nauseas most the time you can't stomach a sip???

second my daughter recently had a uti. they gave her bactrim. took care of the uti but she had an allergic reaction. ran a fever of 103 and higher for three days before they figured out what it was from and stopped the bactrim. after that she felt great. even normal as she puts it. today she says she is ok but not as good as yesterday or the few days before. my question is has anyone ever had pots just switch off?

third mayo says most post viral teens outgrow this in a few years. they also think her hashimotos triggered it. hashimotos is autoimmune not viral so i'm not sure what to make of this???

please any opinions would be greatly appreciated.

[lloppyllama]

Hello there,

First off welcome, glad you found us, but sorry its all so confusing! Hopefully you will start to understand things more soon, and then your daughter can start feeling better

Drinking the 2-4 liters a day while feeling ill is really tough, especially when you are overly nauseated. For me I really just have to force myself to, and teach my mind to not let me be nauseated, though it sounds imposible, it does work for me. Between biofeedback type techniques to just plain persuasion in my head, I am able to not throw up, and stomach the nasty 2-4 liters of gatorade that I drink a day. Its really hard, but for me the only way that I am able to function during the day is if I get my liquids and salt, so ultimately its just a matter of forcing myself to do things.

I am also a POTS teen, so if your daughter needs or wants someone to talk to, feel free to message me, and you can have my e-mail or maybe she can set up an account if you and her wish too. I also know of a site for kids and teen with dysautonomia, if you are interested.

In regards to pots switching on and off, I have never heard of that. It is usually more gradual of a healing process, and hopefully eventually she will grow out of it, but unfortunately, my guess is that she is just having a good day or two here, and will be back to her "normal" sick self soon. I hope I am wrong though! That would be wonderful you you and her

I hope you both are doing well! Feel free to message me if you want to.

-Mary

[valliali]

hi,

i am sorry that your daughter is not well, especially at so young. i was 23 when i became sick, and it has not been easy (i am 25 now).

the thing with POTS is that it seems to come and go, and it affects everyone really differently.

i do not experience nausea, so i cannot really offer any tips regarding drinking the recommended amount of water. your daughter might also find compression hose really helpful - they can be found online and there are a ton of recommendations on this website.

i find that i will sometimes go a couple of weeks feeling almost normal. then i will go through a couple of weeks where i cannot function at all. usually, i am somewhere in between. i have had symptoms that have remained constant these last two years, i have had symptoms that i haven't had for a year and a half, and i am still developing new symptoms. dealing with POTS is not consistent, which is why it is so hard to treat.

i would suggest that you and your daughter read up as much as possible about POTS. the medical community is not very well-informed about POTS and how to treat it, so i have found, and i think many others will agree, that i need to be my own advocate. i've had to request every drug i have tried, and finding the ones that work best for me has been entirely trial and error. i have gotten really sick on a lot of drugs, but have found relief from others. but i have had to do all the research to be my own advocate. i would encourage you guys to really research what you can expect.

again, i am sorry your daughter is dealing with these illnesses. however, you guys are fortunate to have a diagnosis, and now you can focus on treatment. hopefully she will find some good medical help really soon!

[Rachel]

Welcome to DINET!

When I'm nauseated and need fluids, I drink peppermint tea. Peppermint tea helps the nausea, plus it gets fluids in me. I take ginger root capsules sometimes too. That can help with nausea, but it doesn't help as quickly as peppermint tea does for me.

As for POTS "switching off" as you put it, we do experience better days and worse days. There are ups and downs. Sometimes we might do too much on a good day, and that makes for a bad day next. In time your daughter will probably learn how to best pace herself, when to push her body, and when to rest. Even when pacing oneself, there are many triggers that can worsen symptoms (heat, foods, stress, etc). Sometimes symptoms come and go for no apparent reason. Ups and downs are a way of life with POTS.

Your daughter is welcome to join us on DINET if she would like to do so.

Rachel

[EarthMother]

Sorry your daughter is having a rough time but it sounds like you are making progress with a diagnosis. I was diagnosed with Hashimoto in my early 20's which is also about the same time they began making notes in my chart about "orthostatic intolerance". We didn't know anything about POTS back then -- more than 20 years ago.

In my case, I had many months in a row when I was very ill ... but then I could go for a few years without many symptoms (aside fatigue). It really does seem to vary by individual.

As for the nausea, that is really rough. Personally I can do nothing to force myself to drink when it is really bad. Over the summer, when I was in a very bad crash, I would try and sip water, or even use a spray bottle in my mouth to get fluids in. Less than optimal, but that was the lowest I had ever been. Other things that can help are the high compression stockings ... these can cut down on the nausea which allows us to take in more fluids.

When I was a young adult, what worked best for me was an orange juice box beside my bed and a half dozen saltines. I would take these before lifting my head out of the bed and I found it helped tremendously with the morning nausea and pain.

There is a lot of good advice here on the web site ... and you have a lot of it already here in this thread.

Good luck finding solutions that work for your daughter.

[Dizzysillyak]

Has your daughter been tested for celiac disease or gluten intolerance ? This could explain the digestive symptoms, hashimoto's and possibly the OI. I'm a celiac with OI ...

Our bodies need 2500 -3000 mg of sodium daily but I had to go slowly on introducing salt to my diet. It gave me headaches and stomach cramps if I had too much in the beginning ..

[ramakentesh]

Actually not everyone with POTS should increase their salt. Some patients with the hyper form actually have significant postural hypertension without dizziness, and according to Dr grubb patients with this form are better off concentrating on combined beta/alpha blockade or clonidine.

[Dizzysillyak]

Actually not everyone with POTS should increase their salt. Some patients with the hyper form actually have significant postural hypertension without dizziness, and according to Dr grubb patients with this form are better off concentrating on combined beta/alpha blockade or clonidine.

I'm not up on Dr. Grubb's work or the different types of POTS, but at this point it appears to me that most of the research done by traditional medicine isn't geared towards how to get over this or any other disease. That's why it's called a treatment plan ...

I've been basing my healing from CFS/FM (most if not all of those with CFS have OI) protocal on what I've read about diet and malnutrition. Here's a link about sodium deficiency. This one is as good as any. I've read quite a few and they all said the same things.

Of course, if you have a problem with sodium or other nutrients it's best to have some labs run to check this out.

http://www.healthvitaminsguide.com/minerals/sodium.htm

[MomtoGiuliana]

Just want to say welcome to the forum. I also have both Hashimoto's and POTS and they both came on at the same time. Hashimoto's was diagnosed quickly, POTS not for 5 years (and after pregnancy which triggered even worse POTS symptoms than the initial undiagnosed symptoms). I was also told I had anxiety/mental problems--which I accepted until the symptoms became more severe.

Now I manage very well and live a very normal life, other than occasional flare-ups--and I have chosen not to attempt another pregnancy.

Hope your daughter finds the treatments that work best for her and she feels better soon.

[jump]

Hello and welcome!

I also have Hashimoto's and POTS, and it's tricky because there are some symptoms that are the same for both disorders (eg, fatigue).

Teens with POTS frequently outgrow it by the time they are in their mid-twenties, and over time your daughter will learn what management techniques and which medications will help her the most; the first few months of being ill are often the worst, because you don't yet know what helps.

In my experience, Hashimoto's isn't really something I ever "got over." Several women in my family have it as well and they all report the same thing - that even with medication they never get back to feeling how they did before they developed a thyroid disorder. That can be hard to accept - that to some degree, some fatigue and other symptoms may always be there. But, I will say that although I don't feel "normal" (the way I did before I got sick) I do lead a very normal and happy life. I have to pace myself a little more than my healthy friends do, but in no way to I feel like Hashimoto's (or POTS for that matter) has ruined my life. I can only imagine how frustrating it is to be a parent and see your child struggle with symptoms that you may not be able to get rid of. Try to keep in mind that even though Hashimoto's isn't curable, it also isn't debilitating when it's well treated.

I've found that eating a lot of coconut oil helps my thyroid disease, and coconut juice helps my POTS symptoms. Also, thyroid medications are very sensitive - they work best if you take them at the same exact time each day, and with no dairy products, walnuts, or anything containing iron or calcium within an hour or so of taking the medication. Soy consumption can also interfere with the medication and my doctor recommends I never eat more than 10 grams of soy protein a day, and that I try to avoid it all together (which is hard because I'm a vegetarian!). All of this information is in great detail on the insert that came with your daughter's medication; I highly recommend you have her read it carefully and really follow it. I used to be less careful about when I took my medication and my Hashimoto's is so much more under control now that I follow the instructions to a T.

I've also found, through my own experience and through the experience of my family members, that Hashimoto's - especially when you're young and your hormones, height and weight are still changing - often requires FREQUENT medication tweaking. DO NOT assume that the first prescription the doctor gave your daughter will be the only one she needs long-term. Your doctor has already probably been testing her frequently but I thought I'd mention it just in case -- sometimes doctors don't do this if hypothyroidism isn't their specialty. I personally find I need both a TSH, a free T3 and T4, AND a thyroid antibodies test to get my medication to be at the right dose. There is a difference between a healthy thyroid level for the general population (a very large range) and your daughter's personal healthy thyroid level (probably a smaller range within the healthy range for the general pop). If her levels come back normal but she's still having symptoms, she may need a slightly different dose of medication. Often after diagnosis the thyroid gland reacts to suddenly having synthetic hormone, and your daughter could suddenly need much more or much less medication, especially during the first year of starting medication. After that initial adjustment, most doctors like to monitor people every six months; I've found that I need different doses of medication in the winter than in the summer. If your daughter is having thyroid symptoms (ones that more clearly don't overlap with POTS, like hair-loss or moodiness), she could need a small medication adjustment even if her levels come back in the "normal" range.

Also, I'm sure your doctor mentioned to you that it's a little unusual for women to develop Hashimoto's at a young age. Sometimes developing it young is an indication of a more comprehensive problem. Do you or your husband have type I diabetes, rheumatoid arthritis, Hashimoto's or celiac disease in your family? If so you might want to consider having her tested for Celiac's or gluten intolerance, or just simply try a gluten-free diet for a few weeks and see if that helps the nausea. Hashimoto's is an autoimmune disorder that is closely linked to the others I mentioned, and if you have Hashimoto's, especially young, you are much more likely to have gluten sensitivities than the rest of the public; in the average population, gluten intolerance is about 1 in 133 people, whereas in the Hashimoto's population it is more like 1 in 50, and that increases significantly if anyone in your family also has gluten intolerance.

As for the connection between Hashimoto's and other autoimmune disorders and ANS dysfunction, I'm not sure the science is very clear yet (others might be able to answer that better than I can) but there is definitely a significant correlation. Lots of people here have autoimmune problems, specifically those on the Hashimoto's-RA-DiabetesI-Celiac spectrum. Do you have any ideas of what could have triggered your daughter's thyroid disease, or was it totally random? In young people, there is often a genetic component (usually a parent or an aunt also has it) and often it is triggered by an event (exposure to chemicals, diet pills, eating disorders, serious illness). If you know what triggered the hashimoto's, it might give you some insight as to how it might be related to her POTS, I don't know. I've read a theory that after an illness, a person's immune system may come back stronger than before because it has been strengthened from fighting the illness and succeeding (kind of like how when you lift weights, you wear down the muscle a little and it builds itself back stronger than before). Since Hashimoto's is an autoimmune disease, this would mean symptoms will be worse, or could begin, at a time when the autoimmune system is strong.

I find that my POTS symptoms vary a good deal from day to day and from week to week -- so I actually don't find it that odd if your daughter wakes up one day and feels pretty good. Perhaps her autoimmune system was exhausted from the UTI, which would mean all of her autoimmune-related symptoms will be less. Hopefully she'll have more days like that! I do think, though, for most people, POTS doesn't disappear completely in any kind of quick fashion. She may have a handful of good days and then have another handful of bad days.

If she's having trouble keeping water down, try slightly sweetened fluids, like water with a small amount of non-acidic juice or water and pedialyte. Avoid anything with citric acid (gatorade, ginerale) as this can sometimes upset the stomach even more. And as ramakentesh pointed out, super-duper salt loading isn't for everyone; your daughter may have to experiment and find what works best for her. I personally find I need more salt that I was eating before diagnosis (I used to avoid salt! No wonder I felt so sick all the time!!), and I probably do eat more salt than your average healthy person, but I don't find I do well with buckets and buckets of it. I personally only need to eat more salt when I'm particularly symptomatic -- certain things trigger my symptoms and then, yes, I do crave salt and eat more of it. But day-to-day, I just sprinkle a little on my food and don't worry about it too much. The fluids, however, for me are absolutely key. I feel ten million times better when I drink 4-5 liters of water a day than when I drink just 2.

Hope you find some help here for some of your questions! You daughter is lucky to have such a caring mom who is willing to help her sort some of this out.

[ramakentesh]

Actually not everyone with POTS should increase their salt. Some patients with the hyper form actually have significant postural hypertension without dizziness, and according to Dr grubb patients with this form are better off concentrating on combined beta/alpha blockade or clonidine.

I'm not up on Dr. Grubb's work or the different types of POTS, but at this point it appears to me that most of the research done by traditional medicine isn't geared towards how to get over this or any other disease. That's why it's called a treatment plan ...

I've been basing my healing from CFS/FM (most if not all of those with CFS have OI) protocal on what I've read about diet and malnutrition. Here's a link about sodium deficiency. This one is as good as any. I've read quite a few and they all said the same things.

Of course, if you have a problem with sodium or other nutrients it's best to have some labs run to check this out.

http://www.healthvitaminsguide.com/minerals/sodium.htm

I was also reading some very interesting stuff regarding Chronic Fatigue Syndrome and nitric oxide. In particular how it could relate/explain the link with MCS and the many food intolerances found in CFS and related illnesses.

WHen I first got sick I too couldnt handle many foods - anything that was a Migraine trigger brought on POTS, anything that was heavy carb did the same, anything with nitrates tended to as well. In time this symptom disappeared thankfully.

MOST patients with OI should increase salt and sodium, but there may be a small subset of POTS patients with excessive vasoconstriction that could actually make them worse.

[momofsara]

Sara was diagnosed at 19, so I can certainly understand your concern and frustration. You will find much information and help here on this site. It has been such a help and benefit to me.

Hope your daughter has many days of feeling better. And I do know that sometimes the pots does go away. I certainly hope this is the case with

your daughter. I just wanted to add my welcome to this wonderful site. Best to you------Susan

[Megan]

As far as fluids, even though I am capable of drinking a ton of fluids without getting sick, every month-month and a half, I get a liter of saline. I have standing orders at a nearby hospital from my cardio, so when I'm feeling dehydrated I just walk in and receive treatment as an outpatient. If your daughter is really feeling sick, maybe a kick-start with an IV would help? Not cheap, of course, but it depends on insurance.

Meg

[Dizzysillyak]

As far as fluids, even though I am capable of drinking a ton of fluids without getting sick, every month-month and a half, I get a liter of saline. I have standing orders at a nearby hospital from my cardio, so when I'm feeling dehydrated I just walk in and receive treatment as an outpatient. If your daughter is really feeling sick, maybe a kick-start with an IV would help? Not cheap, of course, but it depends on insurance.

Meg

Do you find a saline IV works better than drinking salt water ? I read that some studies showed it worked better but am unclear as to why ...

[ramakentesh]

saline is the BEST! I spoke to a lady that used to get it done and she said it was like a GODSEND.

[Megan]

I do think the saline IV's work better. Drinking Gatorade, salt water, etc, is great, but sometimes I just can't catch up with what my body needs. The IV does it in a short amount of time right into the blood stream. By the time the IV is done I look and feel better.

Meg

[Lenna]

There are medications that can help your daughter's nausea. My son suffered from nausea, lack of appetite and weight loss for over a year when he developed POTS. After a year, he was referred to a gastrointerologist by his new POTS doctor, and the GI prescribed a medication called Domperidone. You have to get it mail order from Canada or Europe because it's not available in the U.S. It has made a world of difference for my son. He's eating again. He rarely complains of nausea anymore.

The first POTS specialist that my son was seeing for a year never recommended seeing a GI. That makes me so angry in retrospect! But the lesson to be learned is that you can't rely solely on these doctors, you have to do your own homework - just as you're doing now.

My son has also given up gluten. He doesn't have celiac disease but it was suggested that he might have a gluten sensitivity. It's a pain in the butt diet, but he has showed some improvement in his energy level in the 3 months since stopping gluten and he's more than willing to stick with it. (He, by the way, will be 17 in 2 days.)

Hope this helps a bit. Good luck to you and your daugther!!