recurring Mysterious Illness needs diagnosis

Posted , 9 users are following.

Hello I'm new to this forum.

I have hypothyroidism for 15 years on 125mcg levo. Tsh between 0.003 and 0.08, t4 16 not sure what t3 but told normal.

I also suffer depression, anxiety, migraine and panic attacks on occasion. I take no medication for these. Im always fatigued.

As a teenager I had energy loss and had to lie down shaking.

Years later I started getting these 'attacks' in my home life on occasion anything from everyday for 3 months to 2 years between, but working it happens everday.

I get weakness in my legs, its like wearing moon boots filled with concrete, unbalanced, the more effort i put in the worse it gets. It then affects my energy, I shake, then I get confusion, dizziness, light headed, my speach becomes slurred, its like im drunk, on severe attacks i talk to myself or shout out to 'unhelpful partners' I can't control it. I then become emotional and depressed.

I saw my dr today and he said its gone on so long it must be panic attacks. But i get panic attacks and it doesn't feel like this. Im obviously frustrated after all these years so it must come across panic or depression to the gp.

I have seen endocrinologist and neurologist a couple of times but not when im having an episode. Mri and eec 9 years ago were clear.

Whats wrong with me? Are there recurring illnesses or is it my anxiety/panic?

Thanks for any advice.

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  • Edited

    I don't have hypothyroidism, but I do suffer from another endocrine problem, Adrenal Insufficiency or AI.  I'm reply to you because I have been suffering from exactly the same episodes as yourself and have recently found out what they are.

    I have found I only get these attacks when my body is under stress.  It can be a stress I don't yet know about like an impending illness but more often it is something I am in the middle of and haven't really (until recently) linked the symptoms at all.

    It's a hyperglycemic attack.  Look up the symptoms.  I actually purchased a blood glucose testing kit because I had a suspicion it was the case (I have both a brother and a step-father with type II diabetes) and with AI I knew I was at risk from getting other endorine issues in particular diabetes.  But the good news is that I don't actually have it because usually for me the problems only happen when my adrenal glands are under stress, such as my last chest infection.  Sometimes this stress is an externally induced stress rather than an illness, so I may well have overdone what I can manage in the outside world, such as done too much at a party with preping things or I have exercised too much on a hot day and become tired, overeaten as a result...  During my last chest infection, my physio found me semi conscious.  I was very light headed to say the least, my speech slurred and very shaky even without trying to stand up.  I know when I have tested my blood glucose levels before or after such an incident they have been very high.  My GP has told me not to worry unless it happens when I am not ill/stressing my body out or the figures go over a certain level because it is simply a case of too much stress on my body and endrocrine system.

    Can I suggest you purchase yourself a cheap testing kit for home use and keep it handy for when one of these attacks occurs.  I have found I have figures of anything upto 12 when they do occur and whilst they don't happen very often, a digital record of these figures for your GP to see will help.  But if it is anythign like my attacks, you don't have type II diabetes, it is just your body is under too much stress at a certain point and can't cope with anything more and suddenly throwing a bowl of ice-cream at it, or a piece of fruit, lemonade or even in my case a mug of hot almond milk it is just too much for it to cope with and an already 'faulty' endocrine system just temporarily goes into melt down.

    • Posted

      Thank you for your reply. My dad and lots of my family have diabetes. I've had many fasting tests and glucose tests. One dr suggested hypoglycaemia attacks but never tested further than the glucose test. I've not had my adrenal gland tested as far as I know. Which is weird as im scared of everything heights, thrill rides, bridges...

      I can only guess its food, or tiredness or energy levels. But what you describe does make sense, I'll look into it thanks.

    • Posted

      You don't need to have adrenal gland issues, your endocrine system already has issues (hypothyroidism) and you don't need to have diabetes either.  It could simply be the same issues as with me, but a different cause, that when your body is overly stressed it just can't handle the sugar levels in your body.  I have always been borderline on all the annual test with my blood glucose levels, but right on the border and never needing any further tests or say just test again in 3 months, that sort of thing.

      The point is I'm not diabetic, it is just when my body is under stress, such as being ill, that the diabetic side of life flares up and I get the hyperglycaemic attacks - but only when I am ill (or have over done exercise and pushed too far/too long etc).

      And you don't necessarily have anything wrong with your adrenal glands.  It is simly a case of taxing the endocrine system too much - all of these conditions are 'linked' in a way and something like 1 in 2 people with the adrenal gland issues i have end up type 2 diabetic.

      For me, my adrenal glands don't produce enough cortisol.  Look it up and see what it controls!  It is not just a stress hormone which most people seem to think it is. 

  • Posted

    Ive got similar problems, ad diabetes 10 years but reckon years of antibiotics as a kid set off all this stuff, even as a teenager I struggled to keep up..and strength and staimina has never been what it should be.  Im 50 now, and feel like 80+, also get false hypos, and cannot get sugars to correct levels, with extreme cravings for junk and salty foods.. I feel comfortable with sugars at about 15.,,Drs just blame being diabetic on everything..even wrists and ankles getting thinner, and feels like poor circulation, even private parts are cold along with hands and feet.  Its really sad, and caused so much stress with all this stuff..
    • Posted

      Thats terrible to hear. My dad has diabetes so I know what a struggle it is to keep blood sugar regulated, my dad would do a little extra work in the garden and go into a hypo hours later.

      I know what its like having a dr tell you theres nothing wrong when you know there is.

      I've bought myself a blood sugar testing kit and am trying different sinareos at the moment. So far I've discovered my average blood sugar is 5. 3 but if its under 5 i start feeling tired and off but if its over 7 i feel good. But I've only been testing 3 days and not had a bad attack yet. Good luck to you , I hope you manage to find a way to make you feel better without it causing damage to your body.

    • Posted

      Hi, I'd like to add to this discussion. It occurred to me when reading your posts, that when you feel like you're hypo you eat sweets to get sugar and the trick is to eat just enough else you'll swing the othet way. Are you aware that white bread and pasta are high glycaemic foods and you are better off eating wholemeal bread and pasta to stop sudden swings in sugar levels? Bananas are a good snack as they release sugar more slowly.
  • Posted

    Hi wendolph

    Not sure if our symptoms are related however..

    Have you ever had pins and needles and/ or muscle twitches as well as your other symptoms?

    Most of what you have described, I've seen a lot of it on the Internet. Symptoms start, and then later on, vitamin d deficiency and thyroid is the mentioned.

    My symptoms are similar to yours except I also have pins and needles and occasional muscle twitches.

    My skin also becomes itchy but I have noticed where the itchiness occurs, the skin is also changing.

    Are you or anyone else aware of this?

    Best regards

    Andrew

    • Posted

      Hi Andrew

      Yes this happened to me too. It was attributed to a vit D deficiency.I was referred to a specialist for this though.

    • Posted

      Hi Andrew,

      Yes I couldn't even stand for long, pins and needles and numbness in my feet. I get occasional twitching in my eye. Awaiting vitD results I'm feeling better recently but with cold weather buckling every now and again.

      At night my legs are indescribably itchy.

      I'm awaiting a test from the hospital. I took my own blood sugar results in and its highly possible that I have Reactive Hypoglycaemia. Over production of insulin. Especially after eating carbs, Sugar and after physical activity.

    • Posted

      Interesting.

      What were your other symptoms Cindy - anything and everything if you can think of them?

      Did you notice your skin changing at all...either thinner or crepe-paper like?

      Andrew

    • Posted

      Hi wendolph

      Have you noticed any skin symptoms like crepe paper, or thinning at all?

      Are you in the uk?

      Andrew

    • Posted

      My other smptoms were numbnss, heaviness of the legs and a burning sensation. I read earler on that this can be a sign of too much Vitamin D which I take due to being deficient.

      I am going to ask for a vitamin D check. My GP did tell me to get back to him . .

    • Posted

      Hi cindy

      Can I ask how long you have had these symptoms for and when you get them , how long the symptoms last eg days at a time etc?

      Andrew

    • Posted

      Well to cut q long story short the numbness started in 2008 The burning started in 2014.

      However the cause was not known until August 2014.

      I was advised by my GP to avoid acidic foodstuffs,drinks and fluoride.

  • Posted

    It's worth getting tested for vitamin B12 deficiency too as this is common. As we get older our bodies don't process it efficiently from the food we eat.

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