"Episodes"

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Do these seem like Addison's-related episodes? Every once in a while (1-2 times a month) I have these days where I wake up feeling nauseous, and it stays most of the day, but I try to eat normally - I NEED to eat because I feel woozy, dizzy, lightheaded, and just generally uncomfortable (and cranky). It's not PMS. The biggest thing that I've noticed, is that at some point in the day my body CRAVES salt. I go CRAZY for something salty, like very salty, buttery popcorn, any kind of vegetables with salt, sometimes meat, etc. Today I happened to have a diabetic rescue fructose tablet accessible (my husband bought them and put them in both our cars) and I tried that - and it really helped for about an hour until I could get home and get some salty food. It was strange because normally sugary things make it worse, but that tablet helped today. But this episode kept lasting all day; I ate several small-medium-size salty meals since 10am just to feel normal. By the way, I'm 5'9" and 130lb - I'm not worried about gaining weight with these episodes, and normally I eat pretty normally.

Also: they have ruled out diabetes and hyperglycemia (just a one-off blood test, but also I bought a little portable machine with test strips and always tested normally). I am being treated for pernicious anemia (although they haven't called it that - I've been on B12 shots every 3-4 weeks for about a year, and iron tablets daily for the last 2 months), and I'm on thyroid supplements (due to a hemithyroidectomy 10 years ago - and it's closely monitored). Anyway, does anyone else have these kind of episodes? I was tested 3 times for adrenal insufficiency because my cortisol levels were borderline, but never low enough that they thought they should do anything about it. I have told them about these episodes, and they know that my blood pressure is on the low side (around 90/60) and I have mild orthostatic hypotension.

0 likes, 13 replies

Report

13 Replies

  • Posted

    Hi are your off days related to slightly stressful days? Do you have any increased pigmentation. Sounds as though it may be possibly linked to reduced adrenal function. I tended to be like that and then after a job relocation it all came to a head. Used to have off days when I felt I was coming down with a bug. Looking back it was around times of slight stress. The trouble is that the onset of Addison's is very gradual that you get used to how you feel and forget what normal feels like. Don't know if that helps any

    Report
    • Posted

      Thank you for your response! I don't think I have any increased pigmentation. I am very freckled and it's summer and we currently live in the southern US (lots of sun and heat) so it may just be hard to tell... but I don't think so. I will try to think about the increased stress connection. Yesterday wasn't a particularly stressful day, but this is a stressful month or so because we are moving; we will see if it gets worse in the next week or so. I have noticed that my orthostatic hypotension gets much worse when I am even a little bit sick; as in, any change of position makes me feel like I'm going to pass out. If the onset of Addison's is gradual, perhaps I should keep getting tested every year or so? They did 3 cortisol stimulation tests between December and April and the results were very similar - a low baseline cortisol reading (under 10) but they jumped enough with the stimulation (to near 20) that they said it was ok, though borderline.

      Report
    • Posted

      Hi pigmentation can be subtle. With me it was a fine line round the border of my lips. Looked like I was wearing lip liner. There was a subtle darkening of my skin on the back of my hands but likewise it was summer and weather was good. One thing that stands out was I was passing vast amounts of urine during the night and no diabetes. As symptoms were so non specific I never went to GP until it became very obvious something was wrong and at that point the postural drop in blood pressure kicked in. I couldn't stand in the shower and struggled to be up walking. The nausea and sickness was horrendous and couldn't eat much. It was at that point my sodium level was very low at 120 and my potassium was high. This is indicative of Addison's. The only test I had was a synacthen test which they repeated as there was no response to it. On starting medication and taking the first tablet I couldn't believe the difference at how alive I felt . Cortisol is your feel good hormone. It makes you feel alive. Maybe of interest to you I was hyperthyroid many years ago as a child and had partial thyroidectomy. I also have parietal cell antibodies and low active B12 so receive vitamin b 12 injections. It all goes hand in hand. It's 12 years since I was diagnosed with Addison's

      Report
    • Posted

      I was a grayish brown color and never noticed it, everyone thought I went tanning. The sad part is I got so sick threw up everyday didn't know why, struggled to work a whole day at work , was confused , sometimes didn't know where I was. I couldn't eat for weeks, husband took me to the hospital my blood pressure was so low they said I should be dead. They treated Me for a eating disorder and I knew that's not what I had

      Report
    • Posted

      Hi 

      When I started my medication I did put on about 7lb but I think that was down to actually being able to eat and feeling so much better and not being dehydrated. You don't keep putting on weight usually as it's only replacing what your body is not producing. Saying that as per normal if you eat in excess or you are receiving too much cortisol you would put weight on. Hope that helps.

      Report
    • Posted

      Thank you, gillian. That's great to hear. I'm so happy that you're feeling normal again. I haven't even been seen for Addisons, but it seems that every time my TSH (thyroid stimulating hormone) reaches below a certain point, I start feeling really weak, pee a lot, and get flank pains. Yes, this means I'm a bit hyperthyroid, but I've lived on even lower levels of TSH before, without these symptoms, so I'm thinking I might have some adrenal insufficiency going on. If I could get past my primary and actually see an endocrinologist, I'd have it investigated. But I'm so prepared to have that diagnosis, I'm already worried about what the meds will do to my weight. Lol. 

      Report
    • Posted

      Not sure about the significance of your low TSH and your symptoms. What's your T4. If you are hyperthyroid then it will put extra strain on your adrenal glands. You gp can do an early morning random cortisol when the levels should be at their highest. They can also do your U&E's to check your sodium and potassium levels. Do you crave salty foods? Symptoms can be vague. I pretty much got used to how I felt til a relocation pushed it over the limit and became quite unwell quite quickly.  Do you suffer from nausea. That was an early symptom, feeling nauseated when first up or if doing something stressed. Did pee a lot during the night .

      Try not to diagnose yourself. Blood tests , particularly a synacthen test will give you a definitive result. 

      I don't always feel well, often have periods of fatigue but it is manageable as long as you take the medication. You get used to managing it. 

      Report
    • Posted

      Hi, gillian!

      I've had a complete workup (no hormone panels except for thyroid) and my potassium and sodium were normal. No weight loss either. It's just that I get very fatigued at times. The other day, for instance, I felt very tired, light headed, dizzy, and my muscles were super tired, and I was peeing a lot. My TSH is below normal, so maybe it's a case of hyperthyroidism. I go to the gym six days a week and briskly walk on a treadmill on an incline, burning about 1000 calories. I feel a bit dizzy and blurry eyed when I sometimes do these walks (about half of the time), but my wife says she feels like that too. Thinking perhaps it's the back and forth motion of walking and the monotony. I'm trying to figure out if I feel really tired the next day after a particularly challenging session at the gym. There are just days I'm getting super fatigued here and there that's making me take notice. And for some reason, I can't seem to drink coffee anymore either. I used to be able to drink coffee, but now it makes my heart race, and makes me feel really weird like I've just been pumped with adrenaline. So maybe I'm in the early stages of adrenal problems. I do have an autoimmune disease already with my thyroid, so maybe my adrenal system is being attacked next. Thank you so much for replying. I will try to get the tests done that you have mentioned.

      Report
    • Posted

      Hi Frank

      Have you had an HbA1c to check for diabetes. Can also be linked to thyroid problems. It makes you thirsty but you also pass a lot of urine. I know that when I used to do the gym and used to feel great after it. As time went on before I knew I was unwell I used to feel ghastly and eventually stopped going. You are pushing yourself and may be worth cutting down a bit . 

      Report
    • Posted

      Actually, I've had it checked twice. Both times my HbA1c was one point above normal. I've lost about thirty pounds since my last check. The weight loss is intentional. But thank you, I will check it again. And again, this could all be due to taking too much synthroid, as I did not adjust the meds to my weight loss. Thank you for your advice.

      Report
  • Posted

    Adidisons symptoms are different for lots of us...weight loss brown patches whites of eyes look tinged with blue and sickness etc..I felt normal just couldn't finish a meal later part from diagnosis but for a year before weight came off for no resson and toes felt odd but apart from that I didn't notice anything else ..the last few days before diagnoasis sickness came and back pain then took to my bed until taken to hospital. .

    Report
    • Posted

      Oh I forgot to say I didn't pee through night at all..then last few days didn't pee at all even though I drank pints of water ...thirst unquenchable. .and my family said I smelt like pear drops...when I got in their car..that's a big tell take sign

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up