Undiagnosed and rare conditions
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POTS, B12 deficiency and undiagnosed illness

swerebswereb Member Posts: 1 Listener
Hi,

apologies on beforehand for a lenghty post! I'm a 23 year old female from Sweden, always been healthy, no health issues. About a year ago I started developing some symptoms of POTS - postural tachycardia, fatigue and palpitations but got no diagnosis. In february/march this year I started developing issues post-eating as well, and went to see my dr for this. The symptoms I experience are that about 15-30 mins post eating, I get severely fatigued (I have to rest for at least an hour, often more), I feel SOB, my heart beats harder (not necessarily faster), I feel ill and when I stand up my tachycardia gets worse than usual. This lasts for 1-5 hours, depending on how much I ate. Due to this I've lost my appetite and I've lost quite some weight these past few months (I didn't have many extra kgs to begin with so I'm now underweight). Drinking water etc is fine, but it's triggered by lighter foods as salads etc as well. My dr diagnosed this as IBS - yes, really. I also recently got tested for a B12 deficiency after forcing my dr's to check it (my HB is normal), and I was borderline deficient.

My current diagnosises are only B12 deficiency and POTS. My only meds are 1.25mg of betablocker per day and 4g of B12.

The things that have been excluded are anything cardiac (I've had a stress test, several EKGs, ultrasound of the heart and I also have an implanted loop recorder). They've also done several blood tests to rule out kidney issues and HB, iron levels etc look fine. I've had two cortisol tests - one was really low (40) and one was borderline fine (about 350, 400 is where you can completely exclude it), and the endicronologist said that it's not Addisons based off that. I've done testing of TSH - our normal values range from 0-4, where anything below 0 is hyper and anything over 4 is hypo. I've had four tests - 3.8, 4.1, 3.7 and the last one at 1.8 which I've been told is completely normal. I've had blood drawn to check for gluten allergy twice as well but it's been negative. Essentially all normal blood tests have given us nothing except B12 deficiency.

I feel like my POTS is well managed and I hope I'll get less fatigued once my B12 levels are up. However, I still have to deal with the fact that I'm essentially unable to eat as of now. No dr has any clue as to what it might be and I've just been told to see a dietician, follow an IBS food map etc. Thing is anything I eat - it doesn't matter if it's a salad or some pasta - makes me feel terrible and as if I'm on the brink of death. The only thing that really seems to serve as a huge trigger is anything to sugary - candy makes me tachy even when I'm just sitting/laying down. But I also can't have coffee etc which to me just makes it seem like my body has a hard time processing anything that "ups" the energy level to much, if that makes any sense at all.

I don't have any real "pain" with eating but I do feel like my stomach is kind of "cramping" and it almost feels like I've devoured an entire three-course meal and then went for a marathon. I haven't thrown up with eating yet but that's probably because I minimize the portion size and listen to my body and just rest for a couple hours or however long there episodes last. It's very limiting and tbh it does make me not want to eat, which in turn of course makes my fatigue and tiredness even worse.

Since my dr really doesn't seem to have any clue and it's about 2 months until I can see a dr that specialises in this I of course wonder if any of you have experienced something similar with food? Does anyone have the slightest clue as to what it might me? I'm at a loss right now and I'm really struggling at this point.

Thank you so much x

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    A very warm welcome to the community @swereb, really lovely to 'meet' you. I'm really sorry to hear how your health has deteriorated. How are you feeling this morning?

    Have you asked a different GP to offer a second opinion? You are entitled to this. We aren't medical professionals so am unable to offer any medical advice. I'm glad you have had some answers and are listening to your body. But I imagine it's frustrating to not have all of the answers. Only you know your body and if you feel something still isn't right.

    Unfortunately I don't know what more I can suggest. I hope others will be able to share their experiences. Thank you for sharing this with us. 
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  • butterflies56butterflies56 Member Posts: 10 Listener
    Hi swereb
    I am so sorry you are going through all this.  
    Can I suggest you join a FB group called UK Addisions and AI Info Support Group.  Secondary Adrenal Insufficiency which is related to a Pituitary Gland problem.....
    (Not Addisons...which is related directly to problems with the Adrenal glands) can cause all the symptoms you mention.  
    I have Hypopituitarism caused by head injury. I have severe Adult Growth Hormone Deficiency, Hypothyroidism(caused by Pituitary nor producing enough TSH...Thyroid Stimulating Hormone and Low Cortisol levels due to Pituitary gland not producing enough ACTH to stimulate the Adrenals.

    It can take years to get a diagnosis of either Addisons or Secondary Adrenal Insufficiency because everyone is different.  For instance in Addisons a lot of people, but not all,  present with hyper pigmentation of the skin(all over tan)  and extreme weight loss  but in SAI this does not always happen.  Random Cortisol Tests will not diagnose SAI. A Short Synacthen will not diagnose SAI because in SAI the adrenals still work when stimulated with ACTH.....An Insulin Tolerance Test is needed...which can only be done by an Endocrine Specialist.   
     
    If you join the FB group there are some very knowledgeable  people on there who have gone through the same issues as yourself.  Even if you don't want to post you can read people's experiences of what their symptoms were before diagnosis.  I hope this information helps.

  • Francis_theythemFrancis_theythem Member Posts: 115 Pioneering
    edited August 2020
    I get food reactions with a similar time frame and the portion thing sounds similar to me too. This is what happens to me: when I eat *many different things*, I get malaise, I feel it hit my stomach, my tach goes through the roof. My stomach goes into cramps, then eventually a stabbing pain. I will be dizzy, feel nauseous and it kinda feels like I have the flu etc. I feel like my digestive system is tearing itself apart and everything is coming undone. It will often end when the food goes out my system. Then I will be really fatigued, also shaky, and usually sleep for 3 hours. It makes me scared to eat. Also, the thing is with limiting portion size is that the stomach size shrinks too so it can kinda get into a vicious circle >< Feel free to completely ignore me if all this is completely up the wrong tree though.

    I'd recommend trying out meal replacements like complan, if you can tolerate them? Or fluid based meals. If there are things you can't tolerate in them, there are specialist prescription ones that drs can prescribe. Just trying to like, stay out of hospital till you can see this specialist dr.

    If this sounds like you, I'd recommend checking out Mast Cell Activation Syndrome (MCAS). It often co-occurs with PoTS. But I'm obviously biased towards my own experiences and don't want to say anything wrong
  • butterflies56butterflies56 Member Posts: 10 Listener
    @swereb
    There is also a condition called Postprandial Hypotension...significant drops in blood pressure after eating.
  • butterflies56butterflies56 Member Posts: 10 Listener
    Hi @Francis_theythem
    I hope you don't mind me posting a link for you.  It's related to MCAS and low Cortisol. Just hoping this helps you.

    https://www.mastattack.org/2018/01/mastattack-107-laypersons-guide-understanding-mast-cell-diseases-part-80/
  • butterflies56butterflies56 Member Posts: 10 Listener
    Hi @Francis_theythem
    The FB group UK Addisons and AI info and support has a good few members with MCAS.
    Hope this helps
  • Cher_ScopeCher_Scope Community Team Posts: 2,795 Disability Gamechanger
    Hi @swereb How are you today?  I can see lots of our lovely members have given advice!  Has it helped you?  
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    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • NotquitedisabledNotquitedisabled Member Posts: 8 Listener
    edited August 2020
    This is completely off base, but what you are saying reminds me a tiny bit of a story from the book, "Doing Harm: The Truth About How Bad Medicine And Lazy Science Leave Women Dismissed, Misdiagnosed And Sick," by Maya Dusenberry (I mention this book a lot when discussing illness and feel it's very important).

    One story involved a woman who would develop severe pain right after she ate. It was extremely painful, she was hospitalized, and tests that her doctors ordered came back normal. Though they shouldn't have, they discharged her. She ended up back at the hospital. Eventually, it turned out she had a perforated stomach ulcer or something and could have died without intervention.

    This does not sound like what you're experiencing, but maybe the problem is actually in your stomach. Of course, maybe it's not. 
  • KandejKandej Member Posts: 5 Listener
    Hi Hope you don't mind me joining the conversation, I too would say look into MCAS, I have Mastocytosis and your symptoms are similar to mine. I also have the problems with food, cramping etc, I've just shared my story on another post, Mat cell conditions are more common than people realise, good luck
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