New - POTS & hypothyroidism

[Abjadeya]

Hi All,

I just joined dinet. I have been struggling with POTS & hypothyroidism for 3 years now. I just got diagnosed a month ago. I was bedridden and completely not functional the first 5 months. I thought knowing what was wrong would bring me some comfort. Taking thyroid medication stabilized me a bit, but my POTS symptoms are still pretty impressive. I have been hydrating as much as possible and using hydration pills, wearing compression stockings and all that, but I still have to work from home and I am unable to live a normal life for my age (28 yrs). My periods are devastating in terms of the fatigue and nausea they cause. Is there something else I need to be doing? I am starting physical therapy next week, but I am really concerned no one around me seems to understand POTS more than I do. I don't have any faith in medical practitioners anymore. I guess just want to know that it gets better.

[Always hoping]

I understand.  I figured it out on my own after 4 years of barely functioning and I still often feel as if I'm educating the doctors.  Knowledge is power though and this site is an amazing resource.  I can only recommend that you keep researching and educating your doctors if needed.  If one doesn't have an open mind, find another.  POTS effects everyone differently and everyone seems to have different things that help them.  Tracking your good and bad days, symptoms and possible things that make your symptoms worse could be helpful.  For me, finding out that my ferritin/iron and aldosterone were extremely low and manage those numbers have helped me immensely.  I've also figured out many of the things that will trigger my symptoms and attempt to manage that also (heat, showers, large meals and exercise).   Have faith that things will get better.  I believe they will!  Be well.

[JaneEyre9]

I can empathize with your feelings. I was completely disabled by POTS just before I turned 24 and also have had terrible periods. I'm now 36 and can function well most days. My breakthrough in my POTS symptoms came 5 years in when I found help through integrative/functional medicine at the Cleveland Clinic. I was told to focus on my diet, vitamin D levels, and to treat intestinal permeability caused by candida. I was skeptical at first, but by cutting out inflammatory foods like sugar, processed food, and grains, I improved quite a bit. Along with antifungal supplements like olive leaf, I also ate antifungal foods like coconut oil, ginger, garlic, and olive oil.  Later on, I also found that grass-fed gelatin eaten during the month before my period helped with my menstrual symptoms. These are a few ideas that worked for me. I would encourage you to find a functional medicine specialist who can look at the whole picture of your health and identify issues that may be underlying your thyroid dysfunction as well. It could be that you have underlying autoimmune issues that could be helped with diet changes and supplements. My heart goes out to you because this is such a hard road, and we have to be our own advocates, which is exhausting.

[Hhh16]

18 hours ago, Abjadeya said:

Hi All,

I just joined dinet. I have been struggling with POTS & hypothyroidism for 3 years now. I just got diagnosed a month ago. I was bedridden and completely not functional the first 5 months. I thought knowing what was wrong would bring me some comfort. Taking thyroid medication stabilized me a bit, but my POTS symptoms are still pretty impressive. I have been hydrating as much as possible and using hydration pills, wearing compression stockings and all that, but I still have to work from home and I am unable to live a normal life for my age (28 yrs). My periods are devastating in terms of the fatigue and nausea they cause. Is there something else I need to be doing? I am starting physical therapy next week, but I am really concerned no one around me seems to understand POTS more than I do. I don't have any faith in medical practitioners anymore. I guess just want to know that it gets better.

I feel the same way. I feel like, God forbid if someone has not your typical "here's your bandaid, I fixed it" illness and get passed around to different specialist like a hot potato. I've been having symptoms on and off since 2010, but as of recently I have been symptomatic since the end of September with maybe a few good days here and there.  I am struggling to keep my job at this point and I'm also a part-time student on-line. The stress of the two feeling the way I do is making me feel worse. I am petrified of what may happen if either my job is in jeopardy or my school. I just want a better quality of life for my children and my boyfriend. Feeling normal again seems so far away. I know I need to put my trust in Jesus, but sometimes it's so hard to do. 

[Abjadeya]

Thank you so much for all your responses!! @Always hoping honestly just finding this website and your responses helped. It was really difficult feeling like I was going through it alone, even though I have such a supportive environment. Still, I found myself having trouble articulating how I felt when I got extremely symptomatic, or when I felt great all day and suddenly felt sick and had to leave an outing or bail on my friends. My doctor is a good listener, and I think if I keep doing my research I can get her to monitor certain things or provide more support. She's trying to get me in to IV treatment without having to go through the ER which is a promising sign. 

@JaneEyre9 first of all - I LOVE Jane Eyre! lol. I must have read that book 20 times and I am pretty sure I watched every show and movie version out there. Thank you for your advice, I had been trying to find a nutritionist because like you I felt that I could probably support my body better if I ate well. I have not been able to find a good one. No one that even knows POTS or has any idea what I am going through. So far, it's been trial and error. I figured out sugar made me so sick so early on. I cut refined sugar out completely and most other sugars too because even fruit is sometimes too much when I am symptomatic. I used to be vegan before this whole thing started, now I feel so much better on a high lean protein diet. I haven't tried functional medicine because unfortunately, the ones I have found are not covered by my insurance.  What's a good whole-foods multivitamin I could take you think (if you don't mind me asking)? I worry about all the synthetic kinds.

@Hhh16 right exactly - I got turned away from ERs for not "bleeding" or "vomiting" (even though my symptoms do include a lot of the latter.) When I was so symptomatic, a doctor told me "what are you so miserable about, it's not like you have cancer." I am so grateful I do not have cancer, but no medical practitioner should ever make a patient feel so invalidated. My latest flare up started end of September as well! With a few good days here and there.  I am sorry about your work and school. I hope that you don't have to lose either. Can you telework some days? I am actually a doctoral student and this semester, instead of going to class, my professors have kindly agreed to let me skype in for reading courses. I have to go back in the Fall though, or I lose my stipend.