Good news and bad news. Anyone else with P.O.T.S.?

[chocoholic17]

Well, I had good news in that the biopsy on my nodules showed them not to be cancerous and although they still can't find out WHY I constantly cough when eating (they say nodules are too small at around 2cms, to cause the problem) my ultrasounds, barium swallow and endoscopes all show nothing. They are convinced it is not down to the Hashimoto's.

Not such good news is that I ended up in an ambulance again two days ago , after simply taking some shopping up to my Mum's flat. I drove there but on arrival,after climbing the stairs,I had chest pain and could feel my heart thumping so fast. I felt quite ill. I've been monitoring my pulse rate lately after reading about a girl who developed P.OT.S. which doctors believe was triggered by Glandular Fever. As I too had G.F. at the end of August, it made me read up about P.O.T.S. This condition,besides causing lots of other symptoms, will always see a persons heart rate go up by more than 30 beats within ten minutes of going from sitting to standing. that's exactly what I found, when testing myself.

Once I had a week of recorded pulse rates (my blood pressure is usually good and low, in fact too low at times....had an 84/30 recently) I toddled off back to the G.P. who agreed it was worth investigating. I had an ECG n the surgery that was normal apart from pulse rate, so I'm due a 24 hour ECG NEXT week.

However, after investigation at A & E, I was lucky enough to have a doctor who had done a project on P.O.T.S. andwhereas a lot of doctors haven't even heard of it, he listened to me and witnessed for himself my pulse rate climb and climb when he got me to stand up. All my other heart tests were fine, as were the blood tests (including a thyroid one he did which shows my Levothyroxine must have now kicked in after five weeks, as my readings were slap bang in the middle of where they should be).

Well, eventually, when he came back to see me, he said ' I think you are right. I think this is P.O.T.S.'

He said he will obviously report that back to the G.P. and says I can ask for a referral to a P.O.T.S. specialist but doesn't rate my chances of seeing one because the condition is quite rare, so there are only a handful of true specialists in the world.

He says there ARE medications that might help but because of my other conditions he does not recommend those for me. I've read beta blockers are often used but I have Type 1 Diabetes too, so beta blockers are not good for diabetics.

Instead I am going to take his advice of drinking loads of water, increasing salt in my diet and try and slowly exercise more. The biggest thing of all, I told him that I want to try ,is a change to a totally natural food diet. I intend cutting out all dairy, gluten,sugar and all processed foods. I already had planned to do that but I'm still waiting to have a coeliac test repeated, as my doctors appear to have lost the last one. Once that's out the way, whatever the result, I am determined to try this dietary change.

In a way, it's a relief to know another of my health problems has been recognised. I don't think I could have handled one more doctor putting things down to me just being anxious!!

The girl in the article I mentioned earlier, healed herself of P.O.T.S. by totally changing her diet and her online blog led to her writing her own recipe book that has now become the fastest selling cookbook of all time.She was seriously ill with P.O.T.S. but now looks an absolute picture of health and was able to come off all her PO.T.S medication.

Her story is my motivation. I have nothing to lose by eating super healthy and everything to gain.

By the way, P.O.T.S. is ,I believe caused by autonomic neuropathy, which can be caused by various conditions, including autoimmune ones.

About 50% of people will get better in time, though it can take some years.......but some people will have it for the rest of their lives. I'm hoping I shall be lucky and fall into the former group, by really, really, trying hard to look after myself.

Does anyone else have experience of dealing with P.O.T.S. please?

Thanks for reading my lengthy outpourings.

Keep smiling, everyone.

[Clutter]

Chocoholic,

Do you have a copy of the thyroid results taken in the hospital? Thyroid results should not be "slap bang in the middle" of range. TSH should be just above or below 1.0 and FT4 and FT3 over half way and towards, or in, the top 75% of range. As you've only been taking Levothyroxine for 5 weeks it's unlikely you are optimally dosed yet and racing heart and pulse rate are typical of under treated hypothyroidism. Make sure you have a thyroid test with your GP 8 weeks after starting Levothyroxine as you will probably need a dose increase. Arrange the blood draw early in the morning when TSHis highest and leave 24 hours between your last dose and the blood draw.

The dietary changes you are making to manage POTS should be beneficial for managing Hashimoto's too.

[chocoholic17 in reply to Clutter]

I don't have a copy of my blood test results done in A & E unfortunately. I know that the racing heart rate can be part of hypothyroidism but my problem seems specifically linked to my pulse rate jumping up by 30-40 beats after standing, which makes things like queuing particularly hard to deal with. If I stand in one spot for too long, that's when it's at its worst. Just standing on the spot making soup or having a shower has my pulse rate going mad and I feel like I might collapse.

I seem incapable of exerting myself at all.

I do agree that changing my diet may well help all my health issues.

[Clutter in reply to chocoholic17]

Chocoholic, I'm not dismissing the POTS diagnosis. I didn't have problems of BP dropping or light headedness when I stood up but before my thyroid meds were optimised I was unable to stand for more than a few minutes without my heart racing and violent palpitations. I would feel faint and start to grey out and have to sit or lie down for 10-20 minutes until I recovered. I spent more time than I care to remember sitting on the stairs with my head between my knees as I tried to get upstairs to lie down.

[chocoholic17 in reply to Clutter]

Really? Oh, that's interesting. Trust me, I don't want another condition like POTS and I've been misdiagnosed over the years before, so I keep an open mind to all things I am told and I am always interested to hear experiences of those living with a condition, as that's how I've learned stuff that has helped me before, especially with my diabetes.

I have been carted off to A & E about five times now with these 'episodes'.....not by my request but by shop staff and paramedics insisting on it because I feel and look so unwell.

It's early days for me with the Hashimoto's, so I'm still learning but goodness, I hope this is not something I will have to deal with forever, as it's making me wary of standing for long when out on my own.

Meant to say, my doctor or endo won't test FT3 unless my TSH and T4 both go out of range, even though I have high antibodies.

[Clutter in reply to chocoholic17]

Chocoholic, I think it's a combination of Hashimoto's and undertreated hypothyroidism which causes the symptoms. When you are optimally dosed, which can take a few months, Hashimoto's can settle down and so will the heart racing etc.

I expect your FT3 is a bit low as it takes longer than TSH to respond to thyroid replacement but it should improve as your dose is increased. Most lab decline to test FT3 unless TSH is suppressed <0.04. If your FT4 is within range it woud be very unusual for your FT3 to be high.

[chocoholic17]

Ok. Thank you for the advice, Clutter. I guess I'll just have to be patient for now and see how things pan out.

[greygoose]

Sorry to be ignorant, but what is P.O.T.S.?

[chocoholic17 in reply to greygoose]

P.O.T.S. stands for Postural Orthostatic Tachycardia Syndrome, gary goose.

[greygoose in reply to chocoholic17]

Oooo! Gary Goose! I like it! lol

OK, I'm with you. But there again, it's a syndrome, not a disease. It has to have a cause. And, as you are hypo, the most likely cause is that. As Clutter said, your T3 is more than likely too low.

[chocoholic17 in reply to greygoose]

Oops, sorry., grey goose. That's predictive text for you. lol

I had glandular fever in August and that can often trigger off P.O.T.S.

On one site yesterday I read that G.F.can trigger off an autoimmune form of dysautonomia, behind P.O.T.S. Autonomic neuropathy behind P.O.T.S. can also be caused by Diabetes, Sjogren's Syndrome or some other autoimmune conditions. I've learned a lot this weekend and still finding out new things about this condition all the time. P.O.T.S. might only be a syndrome but it CAN be a pretty difficult thing to live with, so I intend researching as much as I can and dealing with it as best I can.

[greygoose in reply to chocoholic17]

No, Don't get me wrong. I didn't say 'only' a syndrome. What I meant was, something is causing it and you have to find out what. No point just treating the symptoms. And as you're hypo, the first step should be to get onto a decent dose of thyroid hormone - even if you have to do it yourself, and see if that makes any difference.

One reads all too often that people have been 'diagnosed' with a syndrome and then the doctor thinks his work is done, and sits back on his hands congratulating himself. I'm campagning for proper diagnoses and proper treatment, not take this pain killer/statin/antiD and go away. See what I mean?

[chocoholic17]

Yes, absolutely. I hate taking medications of any description unless there is no alternative and I totally agree that finding and treating a cause of any condition is preferable to just accepting a treatment of symptoms.

It's quite hard juggling several conditions at once though and trying a dietary approach which just might help them all is something I, personally, intend trying along with the medications I have to accept like insulin and Levothyroxine.

[greygoose in reply to chocoholic17]

Yes, but that's the point. If your POTS is due to your hypo, you won't have to juggle anything.

[chocoholic17 in reply to greygoose]

i have three other autoimmune conditions, grey goose, including Type 1 Diabetes, so when I say juggle I mean trying to get a happy balance dietary wise. For instance, although I want to cut out sugar along with other things from my diet, to help calm the inflammation behind autoimmune conditions, to correct a diabetic hypo, you HAVE to do that quickly with sugar, so it'll be impossible for me, personally to cut out sugar altogether.

I bought the new Amy Myers book the other day, which claims in the sales blurb that her way can prevent and reverse the full spectrum of inflammatory symptoms and diseases. The title 'The Autoimmune Solution' is a bit misleading. The index makes no mention of Type 1 Diabetes and I've yet to have a reply to my question about treating diabetic hypos without sugar, which she would have me ditch altogether.

I already have to work out how many carbs in everything I eat and match my insulin dose to that, with POTS they recommend increasing salt in the diet, a paleo autoimmune dietary approach recommends using only natural ingredients and nothing processed, which is fine but it also means I have to learn how many carbs in totally fresh food meals I will start eating. I cannot get this wrong as my body is very sensitive to insulin and just half a unit wrong can send me into a hypo.

Sorry, I'm rambling. Don't mean to. I suppose I'm just trying to explain what I mean, for me, personally, by juggling.

Sorry if that's as clear as mud. I know what I mean. Lol.

[greygoose in reply to chocoholic17]

No, Don't apologise, it's interesting. Especially the bit about increasing salt in the diet. It's very rare to hear that, 'they' are usually saying 'cut out salt'! Personally, I think that's wrong, the body needs salt. When I was in hospital year before last, I was put on a salt-free diet. I asked why, when salt was necessary for life. A nurse said 'possibly, but not too much'. Well, in between 'too much' and 'none at all', there's a huge margin! The cardiologist said that my food should be cooked without food (bauerk) but I was to have a packet of salt - quite large - with every meal, and I had to consume it all. But most of the time, the nurses refused to give it to me. Sigh. I put on weight in hospital! And they said, oh, that's unusual. I dispair!

I agree with the paleo diet about nothing processed! Processed food is the worst! We Don't know the half about what they put in it. I'm Lucky I live in France where they are more serious about food. If I lived in the US I Don't think I'd live very long. lol The UK, is half-way between the two, as I see it, but heading towards the US.

I Don't know much about Amy Myers, never read her book, but from what I know, I do have a bit of an iffy feeling about her. What exactly is her solution? I think believing you can cure everything with food is a bit naive. Although it is very important.

Just a thought here, may be wrong, but have you tried coconut flower sugar? It has a low glycemic index and tastes delicious. You can use it for everything that you would use normal sugar for. I've made cakes with it. And then there's coconut flour, that Shaws told us about the other day. And coconut aminos that you can use in the place of soy sauce. Coconut is supposed to be so good for us, do you not think that any of that would help? Personally, I can't abide coconut oïl. Beurk. And I tried coconut butter instead of peanut butter, but it didn't taste much different to coconut oïl to me. lol

Although I Don't eat much - although I eat exactly what I like (Don't like much, either! lol) - I am fascinated by every aspect of food. Some might even say obsessed! Bad food, good fooding, ethnic food, nutrition, food fads, cooking, presenting, cookery programmes on the tele, recipe books... I'm always reading recipes, but rarely try them. So, once someone starts talking about 'diets', I'm hooked! lol

[chocoholic17]

Amy Myers is someone who had Graves herself and reckons she cured it through diet and supplements too I believe. She is a trained M.D. and a big name in Functional Medicine. Her idea of diet though is pretty extreme and one of the things she doesn't allow is any sugar or sugar alternatives at all. This is why, as a diabetic, I don't think I could follow her advice, totally. She doesn't even allow nuts or seeds to be included in one's eating. I think I could live without wheat, if I could have a few alternatives like gluten free oats and a little brown rice or quinoa but she doesn't even let you have those and no potatoes(apart from sweet potatoes)or legumes. Not even eggs.

Well, if I am going to change my diet for good, I need the change to be sustainable, so I shall try cutting gluten, sugar (apart from when I HAVE to have it to correct a diabetic hypo) dairy and anything processed, to see how I go. Yes, it will be a challenge, mainly trying to adjust my insulin to foods unlabelled for carb content but I cannot live my life as I have the past 18 months......in bed more than out of it......and feeling more ill than I ever have. I believe that me being inquisitive and pro-active in finding ways of making me as healthy as I can be, is something I HAVE to do. I can't cure the autoimmune conditions I do have but I can sure as hell try to live with them in the healthiest condition I can.

[Jodypody]

I know someone who has POTS and I put her on to the blog you were referring to as I believe diet is key. I've switched to the low carb high fat regime and not a dot of stomach problems anymore. Plus the food I'm cooking is delicious. I am having dairy as butter cheese and cream are where I'm getting fats from (yum). Would you like me to get you two to connect on facebook maybe? She's been diagnosed for at least two years now and she's such a lovely person.

[chocoholic17 in reply to Jodypody]

That's really sweet of you, JodyPody but I'm not on Facebook. I'm on Twitter, so if it's okay I will P.M. you. Thanks for your interest.😀

[richard123]

Hi just wondering how you are now? I'm on my way to being diagnosed with pots post viral and recently started thyroxine for hypothyroidism. Any advice pls