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Lethargy, malaise, and unexplained symptoms.

Discussion in 'Other Health Conditions and Diabetes' started by Bnar, Jul 5, 2019.

  1. Bnar

    Bnar · Member

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    My wellbeing has gradually worsened for the last couple of years.
    I used to be full of energy; working out 5 times a week, whilst making sure to get enough food, rest, and restitution between the days. My program was a mix of yoga, interval training, and resistance training. Then, gradually, my energy drained away until I had nothing left to give.

    I am a 27-year-old caucasian male. Besides Type-1 diabetes, my health is good (at least to my knowledge.)

    My HbA1c has been stable between 6.3-6.7 for the past ten years or so, and there have not been any diabetic complications or emergencies for the 20 years I have been a Type-1.

    I have used a pump for 18-19 years, and I am still not using a CGM, nor do I carb count. (I have never needed to.)
    In fact, I have never been much ill at all. So my (quite) recent cocktail of symptoms has me a bit worried.


    It started around 6 months ago, with this... strange, metallic slow burn in my lungs, beneath the sternum. It smoulders like a shot of strong alcohol, or when you push yourself to run for too long. It reminds me a little of having high blood sugar; that "fruity" sensation up your lungs and throat, the stiffness of joints and muscles, and the feeling of dehydration. However, my glucose levels are fine.

    My vision is blurry, my memory and thinking are fogged, my neck and shoulders are painful; sometimes throbbing, my hands and feet sometimes turn a purple hue and swell up, and, without my temperature rising, I have frequent bouts of "fever." My eyes burn, light makes them water and burn even more, my head is throbbing, and I FEEL burning warm; yet, the temperature remains normal, though slightly lower than average.

    My whole system seems... wrong.

    I have had several trips to my GP for testing and consultation; the CRP showed no sign of infection, lymphocytes acted normally, and vitamins were not low. Heart-rate and BP are fine. No signs of diabetic neuropathy either. The only thing found was slightly elevated protein levels in the urine, and a little whiteness on the tongue; not uncommon for a Type-1 diabetic. So my GP eventually brushed it off as "just a bit under the weather."

    I am at a loss because it affects my day-to-day living. Does anyone have some light to shine on my situation? Anything would be appreciated.
     
  2. Dark Horse

    Dark Horse · Well-Known Member

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  3. zand

    zand Type 2 · Expert

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    Lyme disease can give all of those symptoms. It doesn't always show up in blood tests either. You don't always know you have been bitten by an infected tick. It doesn't always come up in a rash. It can be very hard to diagnose. I am one of the lucky ones who got a rash. Of course it may not be Lyme but it wouldn't hurt to google it and read some of the forums.

    Here's a thread I started recently when I thought it was something other than Lyme Disease. Most of the first post isn't relevant to you, but some things at the end of it might 'ring a bell'.

    https://www.diabetes.co.uk/forum/th...-it-could-save-your-life.165816/#post-2084932
     
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    #3 zand, Jul 5, 2019 at 6:35 PM
    Last edited: Jul 5, 2019
  4. zand

    zand Type 2 · Expert

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    The word 'malaise' and 'whole system seems wrong' would fit with Lyme Disease.
     
  5. wiflib

    wiflib Type 2 (in remission!) · Well-Known Member

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    I’m T2 and not taking insulin so forgive me if this is a stupid question but could it be the result of many years of above slightly average blood sugars? Isn’t an HbA1c of 6+ on the higher side of normal? I’m just not sure of A1c targets for T1’s.
     
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  6. Kim Possible

    Kim Possible Type 1 · Expert

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    @wiflib a typical type 1 Hb1ac target is 48 to 58 which is in the 6%s.
    This is not considered overly high.
    Therefore, this is unlikely to be the op's issue.

    Some people with type 1 achieve lower hb1ac but diabetes teams fear this as it can suggest frequent hypos.
    It is only since the very recent advent of Libre and affordable cgms that we have the tools to prove if this is the case.
     
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  7. DCUKMod

    DCUKMod I reversed my Type 2 · Expert
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    @Bnar - Hopefully, as a T1, with at least one auto-immune issue you are having your thyroid checked regularly? For some, the symptoms can be astonishingly delbilitating, and seemingly random.

    Diagnostic thresholds in the tend to be quite lax, so always worth knowing what the numbers are, and whether or not you have any antibodies.

    Good luck with getting to the bottom of it all.
     
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  8. Marie 2

    Marie 2 LADA · Well-Known Member

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    You might even try getting a second opinion. Different doctors have run across different things and might have a better clue what it is. I am reminded years ago of a customer that his mom had an issue and saw a few doctors inside the same group and he had heard about a doctor that was a go getter and paid to go see him and the guy immediately knew what it was. He went back to his group and told them they needed to approve the surgery she needed outside the group and the reply was oh we have a doctor that specializes in that. But all their doctors had been oblivious to what it was.
     
  9. Bnar

    Bnar · Member

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    Thank you for all your replies!

    @zand I do not live in an area that has ticks, nor do I venture out in tall grass (I live in the city). So Lyme's is quite unlikely. (I'm not an outdoorsy type)

    @Dark Horse Lupus has crossed my mind... Though, as mentioned, I've done several blood tests, and there was nothing out of the ordinary with.. anything, really. I will bring it up with my doctor, though.

    @DCUKMod Don't think I've ever had my thyroid checked, to be honest. I've done complete tests before (tested what tested can), so it was perhaps in there. I'll ask my doctor

    @wiflib It means my blood sugar levels rest between 7.0-8.0. Anything lower than that, and you fall too quickly into hypo. For type-1 it's recommended to be between the 6-7 range.

    @helensaramay Yeah, I had too many lows whenever my HbA1c went below 6. I got a new pump this Thursday, actually; the MiniMed 640g. However, I couldn't stand using the CGM; it was used for a whole 8 hours, and that was enough for me. I've used a MiniMed Paradigm since its conception; I still measure my BG levels to manually correct it by setting a bolus dose. No counting of carbs, or anything of that kind. (Never needed to, and all my diabetic nurses/doctors agree that it's little point in trying to "reprogram" me now, after 19 years doing it that way.)

    @Marie 2 I'm going to talk with my diabetic doctor once I'm in for my yearly check-up, hopefully I'll get a second opinion.
     
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  10. Circuspony

    Circuspony Type 1 · Well-Known Member

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    Have you had your vitamin D and B12 checked?
     
  11. Bnar

    Bnar · Member

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    Yes. They are within the normal range.
     
  12. Hotpepper20000

    Hotpepper20000 · Well-Known Member

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    Yes but what are the numbers? You could be on the lower end of normal and still be experiencing symptoms of Vit D or 12 Deficiencies
     
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  13. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @Bnar,
    Sorry to hear you are not feeling 100%.
    And from my experience as a TID, not as health professional advice or opinion:

    From what you have posted i am most surprised that your doctor would ignore protein appearing in your urine.
    There are tests which can further sort out what is happening there. I have heard that some blood tests may not detect kidney problems until up to 50% of the total kidney function is affected.
    Given your doctor's apparently casual response you may wish to seek another opinion, as suggested by @Marie 2 .

    With the prescence of protein in your urine, i have learnt that a thorough eye check is often relevant as sometimes the problem with both is problems with small blood vessels in each organ. However it is difficult to envisage ( excuse the pun) any eye problem being the cause of your malaise IMO.

    Not sure whether you have had any pulse and blood pressure readings, lying down and then after standing for a good 5 minutes.
    My endocrinologist performs these to check whether my nervous system us keeping my pulse and blood pressure responsive to changes in posture. He tells me that a drop of 20 mmHg or more between laying down and standing and a failure of pukse tonrise may indicate some form ifof nerve damage and this damage can also lead to stomach problems including onset of reflux.
    Perhaps look at mayoclinic.org and - autonomic neuropathy, - reflux esophagitis ( Americal spelling) and - gatroparesis.

    Now if you look up causes of malaise there is a multitude of possibilities and really the need for a specialist who can consider all the causes, whittle the number down and investigate the most likely culprits is going to be the most expeditious course - if my experience as a patient is anything to go by.

    I am unsure how easy such a direction would be for you and whether you can really afford to wait until seeing your endocrinologist. If a new GP or even your current one is prepared to do a few more tests and then speak directly with your endocrinologist a an action plan could be expedited.

    You have noted your world has changed with no idea whether things will automatically resolve or get far worse.
    And as they say, Prevention is better than Cure..

    The issue of how it may be possible to obtain a better HBAIC with little or no hypos is a discussion for another day.
    Suffice to say quite a number of TIDs have achieved this.

    But for now i would suggest please look after yourself by getting things further sorted without delay.

    BestvWishes and please keep asking questions and letting us know how you fare.:):):)
     
  14. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    What changed a couple of years ago?

    What changed six months ago?

    Any injuries within the last couple of years? At home? At work? While exercising or working out?

    Have you looked up the side effects for every medication and over-the-counter medication you take?

    Are you being exposed to a toxin at your workplace or where you live?

    Have you tried giving up all grains for a month then slowly reintroducing them?

    Problems that a doctor's don't typically look for...

    - heavy metals
    - mold
    - side effects of medications, prescribed or over-the-counter
    - gluten intolerance - (there are more than 300 documented symptoms; it's highly individual; most who have this condition do not have any gastrointestinal issues).
    - hypothyroid conditions

    That burning feeling beneath your sternum could be caused by a lot of things. I did a search. It could be related to the stomach, heart, or lungs.

    What nutrient levels did your doctor check? Did he/she check your ferritin and B-vitamin levels? Check for anemia?

    Is there anything in your family history that could offer clues?

    Is there anything unusual about your diet? Food groups that you eat a lot of? Food groups that you rarely or never eat?

    I hope your doctor refers you to a specialist. I'd be very concerned too. This list of questions isn't for you to answer. It's just a list of things to look up and compare to what's happening to you.
     
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    #14 Winnie53, Jul 7, 2019 at 1:19 AM
    Last edited: Jul 7, 2019
  15. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    The best test for B12 deficiency is the methylmalonic acid test, but the serum homocysteine test is "probably a good starting place". Chris Kresser explains why here...

    https://chriskresser.com/why-b12-deficiency-is-significantly-underdiagnosed/

    Here's an excerpt...

    Lab Results: What to Look For
    I would encourage everybody to, at the very least, have their serum B12 measured. But as I have mentioned, that’s in many cases inadequate to detect stage one and stage two deficiency. Homocysteine is a marker that you shouldn’t have any trouble getting your primary care practitioner to order. It’s well known. It’s recognized as a marker for cardiovascular disease, and it’s pretty cheap. They should at least be familiar with that, and if you request a serum homocysteine, that’s probably a good starting place. Remember though, if it comes back high, it doesn’t guarantee you a B12 deficiency. It could also be folate or B6, but that might be enough ammunition to then get your clinician to order some of the more advanced tests for detecting B12 deficiency like serum or urine methylmalonic acid. I personally have found that urine methylmalonic acid is superior to serum, possibly because it’s more concentrated in urine than in the blood. I’ve just seen it be more sensitive and more consistent with the other markers of B12 deficiency then than serum methylmalonic acid. If you live in Europe or outside of the United States, you also might be able to get a holotranscobalamin, or a holoTC, which is again, the most sensitive marker for B12 deficiency.
     
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    #15 Winnie53, Jul 7, 2019 at 1:40 AM
    Last edited: Jul 7, 2019
  16. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    This movie tells the story of B12 deficiency...



    And this website provides all the information you need to learn more about it...

    http://b12awareness.org/

    You can be gravely ill in the hospital due to either of these conditions, B12 deficiency or celiac/gluten intolerance, and the doctors often won't think to test for them. Look at this list of the many causes of B12 deficiency...

    http://b12awareness.org/about-b12/causes-autoimmune-malabsorption-gastric-bypass/

    These two conditions, decreased stomach acid and helicobacter pylori, are just a two of the conditions that can cause B12 deficiency, that could also be causing the burning feeling beneath your sternum.

    One more cause of difficult to diagnose conditions are parasites.

    Apologies for the multiple posts, lists of questions, information, and links. I know it can be overwhelming. When your doctors figure out what's happening to you, please come back here to let us know.
     
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  17. Bnar

    Bnar · Member

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    @Winnie53

    B-Hemoglobin: 15.6 (13.4-17.0)
    B-Leukocytes: 3.7 (3.5-10.0)
    B-Thrombocytes: 249 (145-390)
    B-neutrophil granulocytes: 2.1 (2.0-7.5)
    B-Lymphocytes: 1.1 (1.5-4.0)
    B-Monocytes: 0.3 (0.2-0.8)
    B-Eosinophils granulocytes: 0.0 (0.0-0.4)
    B-Basophils granulocytes: 0.0 (0.0-0.1)
    B-LAKTOSEINTOLERANSE GENTEST: SENT (Awaiting results)
    P-Albumin: 48 (36-48)
    P-Sodium: 139 (137-145)
    P-Potassium: 3.9 (3.6-4.6)
    P-Alkaline phospatase 83 (35-105)
    P-Iron: 18 (9-34)
    P-Kreatinine: 75 (60-105)
    P-Aspartate Aminotransferase: 17 (15-45)
    P-Alanine Aminotransferase: 15 (10-70)
    P-Gamma Glutamyl Transferase: 10 (10-80)
    Kidney-eGFR CKD-EPI Kreatinine: >90
    P-CRP: <1 (0-5)
    P-Ferritin: 119 (30-400)
    P-Vit B12, total (Cobalamin): 216 (140-600)
    P-Vit. B9 (Folic Acid): 13 (7-40)
    B-HbA1c: 48 (20-42) (6.5%)
    P-Immunoglobulin: 2.3 (0.7-3.7)
    P-Mononucleosis: NEGATIVE
    P-Lactate Dehydrogenase: 134 (105-205)



    @kitedoc Thank you for your post!



    A kidney problem could explain the dehydrated feeling, along with the lethargy, and metallic feel in my chest.


    I'll also ask to do the HR/BP measurements. (I have noticed lightheadedness more often when getting up from the bed/couch.)


    I’ve also considered an allergic reaction to something; sometimes I get a bad runny nose with a cough, my eyes water up, and I feel pressure behind them, the eyes also react to light (photophobia) so they'll water and burn even more.


    It’s all very vague, and difficult to pinpoint, so I understand my GP’s struggle with locating a cause. For all I know, it might just be me thinking myself worse than I am, by constantly sensing whatever is going on in my body. (A side-effect of having hyper-awareness on my highs and lows ((I know when it drops below 4.5, or if it drops fast. And I know when it goes above 8.)) If I have something just slightly off, it’ll probably feel much worse since I’m constantly thinking about it. That’s why I wish to figure out what it is, or isn’t, so I don’t have to think about all the “what it might be.”
     
  18. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Thank you @Bnar,
    Your GP has ordered lots of tests indeed.!
    Rather than becoming too embroiled in self-diagnosis, perhaps you need to ask for that referral to a diagnostician.
    Your place though I would want a repeat of the urine test for protein, or as my endocrinologist orders for me periodically,
    a First urine of the morning test for micro albumin maybe.
    It is up to your GP and you.
    Best Wishes.
     
  19. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    Here's another to add to my lists... EMF, electromagnetic fields. Some people are more sensitive than others. Do you work or live near high voltage power lines or with large banks of computers for example?
     
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  20. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    @Bnar

    Do you take a daily multivitamin and mineral supplement and/or a B-complex? If yes, can you tell me if it includes "folic acid" or "folate", and can you tell me what form of B12 it contains?

    Another issue that came up in my searches was malnutrition. How many meals and snacks a day are you eating? What do you typically eat at each meal to meet your protein, fat, and carb needs, and what do you eat for snacks? Also, are you eating a low fat or high fat diet? Also can you list the type of fats and oils you typically eat?

    Also, what if any protein supplements, nutritional supplements, and herbal supplements are you taking?

    I'm very curious about what's causing your health issues. They're unusual.
     
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    #20 Winnie53, Jul 7, 2019 at 10:06 PM
    Last edited: Jul 7, 2019
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