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Mystery Illness - Any Ideas!?

Discussion in 'General Symptoms' started by omron, Dec 18, 2013.

  1. omron


    Hi there,

    6 years ago I came down with a mystery illness. So far no doctors had been able to get anywhere with a diagnosis, and I was just wondering whether if I posted a fairly detailed history of my case, symptoms and test results would you be able to offer any ideas about what it could be, or whether ME/CFS is the answer?

    The illness began in November and completely out of the blue. I woke up feeling totally normal and then at just after midday I started to feel very weak and fatigued. This continued for about 30 minutes at which point I wondered if it was being caused by low blood sugar or lack of energy from having not eaten for a while, so I promptly tried eating food (even though I had zero appetite) and it made me much, much worse. I started to feel sick, shaking, sweating and heart thumping and also apparently became very pale – as was told by a friend. This continued throughout the afternoon until 5pm when I started to feel much better. In fact so much so that I believed I was over whatever it was and ate a full meal and went to bed assuming I’d be fine the next day. However, after waking and feeling ok during the morning, again at 12pm the exact same thing happened – fatigued throughout the afternoon. Come 5pm, I improved and felt much better during the evening. Every single day for the last 6 years this exact same pattern has happened – 12pm become extremely fatigued and ill feeling, 5pm I improve and feel better. Unfortunately, this was only the beginning.

    After this continued for about 10 days I went to a doctor who performed some routine blood tests that whilst didn’t show any specific illness, did show an increase in ESR, CRP, white cell count (neutrophils) and platelets.

    These levels continued to rise throughout December, January and February, but then in April had begun to come down. By August they were all completely normal, and although I felt a little bit better, the illness remained.

    Not only does the illness follow a daily pattern that I mentioned above, 12pm worse until 5pm, but there is a bizarre but obvious 6 monthly pattern – my blood tests are all increased during the winter months (October to March) and then from April they begin to improve until August when everything is normal again, and then come October they all start to rise again and the pattern repeats itself. This has happened every single year for 6 years now without fail. During the winter I feel worse too, as reflected by the blood tests, but come the summer when they all become normal I only feel a mild improvement in myself.

    Recently, instead of my CRP, ESR, platelets, neutrophils etc. being raised as I said above, they all became normal during the winter and instead my ALT (alanine aminotransferase) became very high (313 and top of the range is 50), stayed this way throughout winter and has since become normal again as I’ve come into the summer months. I had my liver scanned and a hepatitis screen to check for liver problems but all was fine. I’ve since looked ALT up and found that it can be caused by inflammation to the liver, and the increased ESR, CRP, platelets etc. points to inflammation too, although only during the winter months for some reason.

    Other symptoms I have:

    Strongly beating heart – At first this was only present between midday and 5pm, but it has now become constant at all times. Whether I’m lying, sitting or standing my heart beats far too strongly all the time and I feel a constant pounding in my chest. Not necessarily too fast, just thumping away in my chest. When I stand my pulse rate increases too. This was shown as postural tachycardia by a tilt table test.

    Hair loss – from body and head. Hair on my head is very thin now, and is still constantly falling out. Also lost hair from my thigh calf.

    Constantly low temperature - low on waking (average about 36.0 C/ 96.8 F) and rises slightly throughout the day peaking at about 9pm at 36.4 C/ 97.5 F). Also if I stand, walk about or do any exercise my temperature drops.

    Fatigue – the fatigue doesn’t make me feel sleepy, and I never sleep during the day, just weak and ill. It’s hard to describe exactly, but since this all started I haven’t felt right once.

    Loss of appetite – Since becoming ill I haven’t felt hungry at all. It’s like my sense of hunger has been switched off.

    Digestion – bloating, gas and wind. Along with a loss of appetite I seem to have lost feeling in my stomach, as if it is not sending me messages of when I’m hungry. I could go hours and hours and never feel hungry.

    Weight – Has always been very low, and no matter how much I eat I can’t get over 8 and a half stone/125lbs. I'm 5ft 10" and 26 years old.

    Skin – I have severe seborrheic dermatitis on my face, scalp and torso.

    Nervous system – It feels like my entire nervous system is very oversensitive, but not in the normal way people talk about. When I look at a TV, computer or phone screen I get what feels like an adrenaline release. I will sweat, shake, my heart rate increases and I have to open my bowels. This happens almost instantly. I don’t find the computer or TV a strain on my eyes or struggle with the glare. In fact the only problem I have is this ridiculous body reaction. I also get the same reaction of an what feels like an adrenaline release when I need to open my bowels – instead of the normal message everyone gets that tells them they have to go to the toilet my body instead does the shaking, sweating and heart rate increase which will persist until I open my bowels and it then stops almost instantly.
    Also to do with my digestion is that when I drink fluid my body often reacts by shaking and sweating. My digestion is so poor that I cannot drink during the day as it fills me up and would not allow me to eat anymore food, and with such a low weight I am concerned about it dropping even further. So I finish my evening meal and then have fluid. However when I do drink my body reacts by making me sweat and shake – again what feels like adrenaline. This happens with cold drinks, so is not to do with the warmth from hot drinks. This coupled with my extremely poor digestion has meant that I find it very difficult to consume the required amount of fluid per day, and sweating and shaking every time you consume fluid is incredibly debilitating. I realise these could all sound psychological but can assure you they are definitely not. They are physical reactions that I have absolutely no control over.
    Other problems with the nervous system are that any minor stress or tension results in a massive over reacting. I find it difficult to watch something like a sporting event or a tense thriller as even the slightly tension causes my body to over react and I will again sweat, shake, and have the heart rate increase - like a panic attack, but not.
    It’s really difficult to describe all these problems accurately as most people seem to always get the wrong end of the stick, like I can’t look at a TV screen because it’s too bright and my eyes are sensitive to the light, but that’s not the case at all. All that happens is my has what feels like a huge adrenaline release - body sweats, shakes, heart rate increases etc.

    Reaction after stress – If something does cause me to be stressed or nervous, as mentioned above, then the next day or a couple of days later I feel much worse. More fatigued, digestion worse, more sensitive nervous system. Also my temperature can increase and has on a few occasions after a big stress caused me to have a raised above normal temp or even fever. It seems that after something stressful then whatever the inflammation is that’s lurking in my body and causing my increased blood tests is able to have more of an affect, thus causing the problems I mentioned above.

    The sun – I am unable to go in the sun as if I do my body also reacts by causing me to feel much worse the next day and then thereafter and also causes me to have an increased temperature or fevers. This to me seems like my body is viewing sunlight as a stress to it (merely guesswork though). I've only been able to go in the sun 3 or 4 times over the last 6 years and each time I've felt much worse after and had quite severe fevers a few days later too.

    Sweating – whilst so many things cause me to sweat, I only do so from my back, armpits and legs. My face, head, neck, chest, stomach, arms and hands do not sweat at all, ever.

    Sleep – I cannot get to sleep unless I eat something. I am wide awake and then I eat something small and I fall asleep within a few minutes. I often wake during the night and have to eat something small to get back to sleep again.

    Racing thoughts – my brain seems to be over stimulated all of the time. I also often get racing thoughts when I eat.

    Reflexes – very quick reflexes.

    Greasy hair – within hours of washing it my hair becomes very greasy.

    One last thing I have not mentioned is that along with following the seasonal-like pattern of improving blood tests during the summer months, some symptoms I have improve during these summer months and then can go altogether, but as the blood tests begin to rise again around October new symptoms will then emerge. So symptoms can come and go following this pattern every year and large parts of illness seems to be continually changing.

    I DO NOT suffer from:
    Brain fog or memory problems – my mind feels as sharp as it has ever done.
    Dizziness/light headedness/fainting
    Chest pains.
    Visual disturbances.
    Pain – I have no joint or muscle pain whatsoever.
    Immune system – been ill with regular viruses, none more so than usual though, and the immune system hasn’t struggled.
    Depression – haven’t been depressed at all, just frustrated.

    Doctors have performed quite a few tests on me:

    TSH – in first few weeks of illness it was 2.2, now 6 years later it is 1.4.
    T3 – 4.8 PMOL/L – normal.
    T4 – 19.4 PMOL/L – normal.
    Parathyroid – 2.8 PMOL/L – normal.
    Cortisol – 901 NMOL/L – high.

    Echo cardiogram, ECG and 24 hour heart rate monitor – normal but cardiologist noted my strongly beating heart and an erratic heart.
    Ultrasound of stomach – normal.
    Ultrasound of liver – normal.
    ACTH Stimulation (Synacthen) test – normal.
    MRI of head and lumbar - normal.

    Urine metadrenalines – normal.
    Anti-nuclear antibodies – negative.
    Smooth muscle antibodies – negative.
    Mitochondrial antibodies – negative.
    Gast PL Cell antibodies – negative.
    Liver Kidney microsomal antibodies – negative.
    Endomysial antibodies – negative.
    DNA binding antibodies – negative.
    Rheumatoid Factor – normal.
    Borrelia (Lyme disease) antibodies – negative.
    Infectious Mononucleosis – negative.
    Coxsacki B Virus – negative.
    Toxoplasama antibodies – negative.
    IgG – normal.
    IgA – normal.
    IgM – normal.
    Chromongranin A & B – normal.
    Compliment C3 – 1.38 g/l – normal.
    Compliment C4 – 0.28 g/l – normal.

    Glucose fasting test – normal.
    Insulin-like Growth factor 1 & 2 – normal.

    ESR – 60 mm/hr - high.
    C-Reactive Protein – 77 mg/l - high.
    Neutrophils – 12.4 x10^9/L - high.
    Platelets – 460 x10^9/L - high.
    MCV – 73.0 fL - low.
    MCH – 22.9 pg - low.
    MCHC – 29.6 g/dl - low.
    Serum iron – 4.4 UG/L- low.
    Iron Saturation – 11% - low.
    Haemoglobin – 11.8 G/DL - slightly low.

    One last thing – I’ve noticed as I’ve become more aware and familiar with my symptoms that looking back over most of my life, there have been small events that lead me to believe that whatever this illness is it has been sort of within me or lying dormant for most of, if not all my life. Looking back from the age of 8 I can think of about 10 separate occasions where I became ill for a brief period that had exactly the same symptoms as I now have all the time. Also the fact that throughout my entire life I have been such a low weight (up to 20 years old I weighed no more than 8 stone/120lbs) and found it impossible to put any on. I personally now believe that whatever is the matter with me has been there for over 10 years and I could well believe it is something I was born with.

    I can only apologise for the length of this and the amount of information included (and if any doesn’t make sense), it’s just that I’ve been ill for coming up to 6 years now and I'm still no closer to figuring out what's wrong with me. All the doctors I have seen are either uninterested or seem to have absolutely no idea and are not willing to really try anything, so I’m left to myself to try and figure it out. In 6 years there hasn't been a single suggestion or attempt to treat even part of what's going on. Some have said it's CFS, some have said it definitely isn't. I'm at a loss, but unfortunately so are they it seems.

    If anyone has any ideas or thoughts on any of this I would greatly appreciate them. It may seem like nothing but even the most random thought might give me something to go on or somewhere to start.

    Thanks for reading!


    P.S. I wasn't sure what part of the forums to post this so apologies if it's the wrong place!
  2. lnester7

    lnester7 Seven

    You remind me of my early CFS days. One thing I would ask is for a cytokine profile and lymphocyte subpannel. I react horrible to the sun too. I had very high hh6v titters, you can see the ICC paper and the recommended tests there.

    Look for Poor man tilt test table, something you can do yourself and is easy to see if you are suffering some kind of Orthostatic Intolerance. I have CSF, I did not develop the other symptoms till later about year 4 and on.
  3. Crux

    Crux Senior Member

    Hi Omron;

    Have you been checked for gluten intolerance, or celiac disease?
    That could explain the iron deficiency anemia with elevated platelets.
    With celiac, or gluten intolerance, there can be inflammation, probably causing elevated cortisol, ESR, CRP, etc.
    This could be causing the malabsorption and malnutrition.
  4. Martial

    Martial Senior Member

    Ventura, CA
    Sounds like your sleep rythyms are off and producing lower vitamin D, of course none of use are doctors but it appears something is going on in terms of adrenal function, I would probably book an appt with an endocrinologist and get a 24 hour test done, testing some other hormones as well.
  5. Sea

    Sea Senior Member

    NSW Australia
    I second the advice to be tested for Celiac Disease if you haven't already. If that doesn't show up a trial of a gluten free diet would show you whether gluten intolerance is a problem. As Crux noted there are several symptoms there that point to Celiac as a possibility. Don't go gluten free before the testing though as that interferes with the antibody production that the test is looking for.
  6. ahimsa

    ahimsa Rarely on PR now

    From the section above (I added the bolding) it looks like you took a Tilt Table Test and got a diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome). Is this right? (It was a long post, I may have missed something)

    I'm just wondering, have you tried any treatments for POTS? Here's one web page with a list of possible treatments:

    I'm not saying POTS is the cause of all your symptoms. But many folks with an ME/CFS diagnosis (and also Fibromyalgia, EDS, and other illnesses) often have either POTS or NMH (types of Orthostatic Intolerance) as part of their problem. Treating the POTS might help relieve some of your symptoms.

    Here are a few other web sites about Orthostatic Intolerance:

    I have a diagnosis of NMH (Neurally Mediated Hypotension) and I've been helped by treatments for it.
  7. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    If you do have ME/CFS, it seems you have a quite atypical form of it, you have a few things you mentioned which made wonder if you could have some kind of atypical form eg the fact your body temp drops with exercise.. is a common ME thing when someone has overdone it. The fact you have no mind fog or many other normal ME things..well would be highly unusual if you have ME/CFS.

    One thing which stood out to me in your posts is that you seem to autonomic dysfunction going on. That can cause weird symptoms including can affect appetite and do strange things with the bowels etc. You also said you had been tilt table tested and been diagnosed with POTS, POTS is a form of autonomic dysfunction so with that can come other strange autonomic dysfunction symptoms.

    In fact the start of your illness may of been POTS.
    When I read that, I thought possible POTS.. as you wake up feeling ok but then later on in the day you start getting sick. Note - eatting can trigger POTS as it diverts some of your blood to your digestive system, those with POTS often have low blood volume. (any upright position including sitting can trigger POTS). You may also have the hyperadrenalic kind of POTS and hence getting a lot of adrenaline set off easily. Hyperadrenalic kind of POTS often has increased BP (as you mention) when you are upright.

    Viruses and infections can lead to POTS. (what confuses me thou if it is POTS causing a lot of your issue, is the fact that you are worst in winter.. POTS patients tend to be worst in Summer. The worsening in winter thou could be yet another undiagnosed coexisting issue going on on top of the other things, which could be confusing the picture of your symptoms.. eg maybe you have mold issues and are getting more mold exposure in winter?).

    i do think thou as you have been diagnosed already with POTS via tilt table test, to make sure you are being treated for this as well as you can be. How are you treating your POTS? Do you see a specialist for your POTS and dysautonomia?

    One drug which Ive found helpful for both kinds of POTS and orthostatic BP spikes is clonidine, I also take it with florinef for my POTS.
    Last edited: Dec 18, 2013
  8. Ema

    Ema Senior Member

    Midwest USA
    It sounds a lot like Cushing's. The fatigue, stress reactions, sweating, hair loss, dermatitis, elevated liver enzymes...all can be symptoms. It's not common to be skinny but it happens.

    Has this been ruled out by someone with a clue? Cushing's can also be cyclical which really only a super specialist would be cognizant enough to recognize.
  9. omron


    Thanks everyone for your replies! Really appreciate it. I’ll try to take each one and reply specifically to you:

    Crux and Sea:

    I have been tested for Celiac and it came back negative, although I’ve read about the test not always being right. I’ve considered doing a gluten free diet just to see if it made any difference but haven’t tried it yet.


    I’ve seen a few endocrinologists who at first believed I had adrenal insufficieny/addisons, but when my Cortisol levels came back raised they pretty much lost interest. I’ve had a 24 hours cortisol urine test and that showed slightly raised Cortisol, but again, nothing has been done about it.

    Yes, I did have the tilt table test and it confirmed POTS. I was due to start treatment for POTS (was prescribed Midodrine) but then my ALT level went up and I had to have that monitored and the liver scan and profile done. So the POTS treatment was sort of put on the back-burner until that was sorted, plus I was slightly hesitant about taking drugs for an illness when no-one was sure what the underlying cause for it was – POTS doesn’t seem to have any involvement with the liver. If I’m honest that remains my position. The specialist I’m seeing who diagnosed the POTS has accepted that it can’t be the cause of a lot of my symptoms, which means that there has to be something else going, no doubt also causing the POTS, and so I’m a little worried about taking the Midodrine and how that will interact or affect the mystery underlying illness.

    I was told after the tilt table test that I had POTS but not the hyperadrenalic type.
    Prior to getting ill I didn’t have any viruses or infections (that I knew of), it was just completely out of the blue.
    The being worse in the winter and better in the summer is probably the strangest part. As I said, it’s reflected in the blood tests as well as the way I feel, and happens every single year without fail. I’ve assumed it has to be my body responding to something like the temperature or amount of light – I know hormones change depending on the amount of light (melatonin and serotonin), and also have read that Cortisol is affected by the temperature, so whether some of those are playing a part in it is possible.

    Cushing’s is interesting as the raised Cortisol levels have led me to checking it out a lot. From what I read it has never seemed quite like me, as a lot of the main symptoms seem to be weight gain, round face, high blood pressure, hump on the back, skin pigmentation increase, bruising easily, depression etc. which mostly don’t go with me (although I see you say you can be skinny with it).
    Having said that, if the symptoms you listed are all synonymous with it then it’s definitely possible. Could the fact that my elevated liver enzymes were only during the winter, like all my other elevated test results, point to the Cortisol being raised only during that time? And can the cylical Cushing’s have such a set pattern as mine, or is it more random?
    And no, unfortunately Cushing's hasn't been ruled out by a specialist. In all honesty, not much has. Doctors on the whole don't seem to want to get involved with me, and whilst a lot of testing has been done, nothing in the way of treatment or diagnosis has been offered by anyone really. I'm basically left to sort it all out myself for the most part.

    Again, thanks everyone for your replies! I know my original post was huge so I really do appreciate you for taking the time to read through it.
  10. Ema

    Ema Senior Member

    Midwest USA

    Cushing's is one of those weirdo illnesses. Everyone has a picture of it (namely the one you describe) but the truth of the matter is that it seems to vary a LOT even across one person's experience of it which is why you need a specialist with a lot of experience and an open mind.

    The truth is that Cushing's can look a lot like Addison's even though they are on opposite ends of the spectrum. I was diagnosed with AI and so my experience with adrenals comes through that lens. Occasionally people with Cushing's end up on Addison's forums looking for help and that is the extent of my experience.

    I know how difficult it is for most of them to get properly diagnosed. I know one woman who actually contacted a Cushing's awareness group and they paid for her to fly from Alaska to CA to see a doctor that had a clue. So there is assistance out there if you feel like this is a path worth pursuing, if you look in the right places and never take no for an answer until you are satisfied that the answer truly is no.

    I also want to point out the the high CRP/ESR and low iron also go along with Cushing's.

    If it were me, I would cut and paste a version of your story on as many Cushing's forums as you can find and try to get some help from people that know more about it.

    Here are some to get you started (just from Googling, not personal experience):

    Good luck to you on your journey!
    Sea likes this.
  11. omron


    Wow, that's amazing! Thanks so much for the info and help. I've so often wondered how I can have all the symptoms of Addisons, as said to be me by endocrinologists, and yet an elevated level of Cortisol. Maybe Cushing's would explain it. It's certainly something I'll be following up heavily now, and will also definitely try the forums you provided.

    Thanks again! It's massively appreciated!
    Sea and Ema like this.
  12. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Those two things can have a virus trigger or affecting.. so there can be a joint involvement in some cases
  13. Valentijn

    Valentijn Senior Member

    @omron - Have you had vitamin D issues investigated thoroughly? If you're having some sort of reaction to it, that might be what causes your reaction to sunlight and improvement in winter months. Vitamin D also acts as a hormone, so problems with thta could be triggering quite a few other problems.

    Come to think of it, that also might explain why you'd start having problems around noon and be doing better around 5pm. 1pm is typically peak time for UVB exposure, which is what creates vitamin D. And UVB can be present from between about 10-4pm depending on your latitude and the time of year.

    No idea if there's autoimmune diseases involving vitamin D and/or it's precursors, or UVB itself, but it might be worth looking into.
  14. omron


    My vitamin D actually came back low when tested, although that could be because I can't go in the sun as that makes me ill. But when trying to take vitamin D supplements the tablets have irritated my stomach, so it's currently going untreated.

    It's really interesting the perspective you've looked at the vit D, and might well explain a lot of the problems I've got. Definitely something I can follow up on. Really appreciate it, any help or ideas is hugely welcomed!

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