Hi! 6 years ago I came down with a mystery illness. So far no doctors had been able to give me a diagnosis, could it be lupus? More details:

[omron]

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 whether it might be Lupus or Lupus related/autoimmune? Or just any ideas at all really?

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 5 and a half 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 5 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, 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.

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 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 5 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.

Headaches.

Visual disturbances.

Pain – I have no joint or muscle pain whatsoever.

Vomiting.

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 5 and half 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. Range 180 - 620.

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:

Normetadrenaline - 1.71 UMOL/24 HRS - Range 0-3.60

Metadrenaline - 0.87 UMOL/24 HRS - Range 0-1.90

3Methoxytyramin - 1.56 UMOL/24 HRS - Range 0-3.30

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 – 11.7 G/L - Range 6-13

IgA – 2.81 G/L - Range 0.8-3.0

IgM – 0.51 G/L - Range 0.4-2.5

Chromogranin A - 51 - Range 0-60

Chromogranin B - 92 - Range 0-150

Compliment C3 – 1.38 g/l – Range 0.9-1.80

Compliment C4 – 0.28 g/l – Range 0.1-0.4

Glucose fasting test – 4.4 mmol/L - No range.

Insulin-like Growth factor 1 - 43.3 nmol/L - Range 23-70

Insulin-like Growth factor 2 - 67.3 nmol/L - No range

ESR – 60 mm/hr - Range 1-5

C-Reactive Protein – 77 mg/l - Range 0-8

Neutrophils – 12.4 x10^9/L - Range 2-7.5

Platelets – 460 x10^9/L - Range 150-450

MCV – 73.0 fL - Range 83-105

MCH – 22.9 pg - Range 27-32

MCHC – 29.6 g/dl - Range 31-36

Serum iron – 4.4 UG/L- Range 10-28

Iron Saturation – 11% - Range 20-55

Haemoglobin – 11.8 G/DL - Range 13-17

Alanine Aminotransferase - 313 - Range 30-65

I saw a former doctor who now works outside of the health service that diagnosed me as having adrenal fatigue, and prescribed a cortisol supplement, Nutri Adrenal I believe it was called. I took this for 2/3 months but it made me much worse - I felt very tight and tense, couldn't sleep at all and had a horribly racing mind and constant "singing in my head" where it was like I kept repeating songs or tunes in my mind. All that and basically no improvement in any other aspect of the illness, so I'm fairly sure it isn't an adrenal problem.

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 and a half 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.

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!

Andy

[MaryF]

Well as soon as I started to read this what jumped out at me was perhaps a fast Thyroid coupled with adrenal issues. Also gluten intolerance may not help either. Also if you have been to see who I think you have, he is excellent... and perhaps you need to contact him again! MaryF

[krisdy in reply to MaryF]

i think you have lupus (SLE) it sure sounds like it

[sazzyb]

I agree with Mary, thought possible adrenal and thyroid issues from the start. It can take a lifetime for anything to start showing in your bloods. I can relate to a couple of things you've listed which started in my 20s - and it was also when I had my first thyroid test (I didn't even know what a thyroid was, no Google in those days) which was negative. I was diagnosed 25 years later, after my thyroid had stopped bouncing backwards & forwards.

[SarahHeney]

To add to the previous 3 replies, it does not sound like lupus but more adrenal/thyroidy. Also, that hard beating heart thing can also be caused by anaemia. Have you been treated for that? The other biggie that jumps out at me is Vit D deficiency especially as you are worse in the winter months. Many people with lupus are vit d deficient as we cant go out in the sun and the symptoms are very debilitating. The vit d we get given is prescription strength. Not the sort you can buy in a shop. Please as a matter of priority ask for your vit d levels to be tested as the symptoms of that may be confusing the big picture. So, retest for anaemia and haemaglobin levels and Vit D, adrenal and thyroid. I will keep thinking xx

[Sam13]

Hi I also agree that it does not sound like Lupus at all. Vit D deficiency could explain some of it. Sorry you are having such a rough time and it is frustrating not getting an answer but as I'm sure you will have read looking up Lupus it doesn't have set patterns and it is very much a law into itself.

Where have you been for consultations? MaryF alluded that you had been to good consultant and to trust him and see him again. I do hope you get an answer.

Lupus is awful and not what I'd wish on anyone so I hope that is a great tick off your list.

[Hidden]

That is a fascinating read Omron, I'm sorry you have been suffering so much with no diagnosis so far. I am not a medical doctor, but agree with the others that this doesn't sound like Lupus. I have autoimmune hepatitis too, and it doesn't sound like that either - my liver readings were much, much higher than yours and I had anti-smooth muscle antibodies with very raised IgG, among other things. You seem to have some kind of photosensitivity linked to something going wrong in your endocrine system. One day a doctor will be able to fit all the pieces of the jigsaw together. I hope it is soon for you. Good luck.

[Bonnie39]

I may be completely wrong here, but this sounds like stress to me. I agree with the others, thyroid and iron/vitamin levels should be checked. Is it possible that there is something you worry about in the afternoons?

[omron]

Wow, thanks everyone for the replies!

MaryF - I've always thought it had to be some sort endocrine issue, and for a while was convinced it was adrenal fatigue/insufficiency. I'm not sure if we're talking about the same person who I've been to see.. I don't know if there's a way to contact you directly here (I'm still working my around!) but if so can I do so to ask a few more questions in regards to this person?

SazzyB - I've read an awful lot about people with thyroid problems taking years to get a diagnosis because the levels don't show anything wrong. I'm in the process of sorting some more thyroid testing on top of what I've already had done (Reverse T3, ultrasound of the thyroid) so hopefully that might show something. You mentioned your thyroid was bouncing backwards and forwards - is that something common? As I seem to have symptoms from both hyper and hypothyroid. Are thyroid sufferers likely to get symptoms from both ends of the spectrum?

SarahHeney - I haven't been treated for the anemia, no. The problem is that whilst during the winter all these levels are wrong (hemoglobin, esr, crp, neutrophils etc.), they return to normal in the summer, so trying to justify or in fact needing treatment in that period is tricky. I also completely forgot to include my Vit D levels! Doh! And yes, they are low. 27 I believe (will check and confirm later). A consultant was actually going to get me to have vitamin D injections to raise them but my GP said he wasn't licensed or had the required skills to do it, so at the moment that's not getting treated. From what you've said though it sounds like I should be focusing pretty heavily on getting that sorted.

Sam13 - thanks very much. I've seen pretty much every consultant you could think of - endocrinologists, gastroenterologists, hematologists, cardiologists, infectious disease, virologists, neurologists.. the list goes on. They either seem to have no idea or aren't interested at all.

Bitternwatcher - thanks for the kind words. I hope it's soon too.

Bonnie39 - I know what you're saying, so much of it sounds like stress or anxiety. I've even looked on anxiety and panic attack websites and I have had pretty much every symptom of them at some point, but I can assure you - it's not stress. I've even asked consultants whether I could increase all the strange blood levels that are raised just by being stressed or with my mind and they said no. Also, things like getting 103F/40C fever just from going in the sun cannot be only down to stress. There are too many extreme symptoms or funny blood levels that means there has to be more going on.

Thanks everyone for your replies, I really appreciate it. I hope I've managed to reply to everyone and cover all the questions asked. There seems to be quite a few votes for thyroid/adrenal, or at least endocrine, which backs up what I've always thought. It's just convincing the docs now. If anyone has any other ideas/thoughts then please don't hold back, anything is hugely appreciated, and I'll keep replying to every response or question.

[MaryF in reply to omron]

I have sent you a private message and yes still to thryoid and adrenal issues but always best to check iron, b and D also Doctor often are baffled and not very trained in such issues, also some diseases make sero negativity a possibility including Lupus!. M

[MaryF in reply to MaryF]

ps if you suspect any of the above also join TUK - Thyroid UK on this same platform, as many members have similar issues. MaryF

[Natura]

Wow...I am so sorry that you are feeling alone with these symptoms. All I can share is that I have that appetite problem. I do have low end lupus, but also slightly hypothyroid. I do believe one can go from hypo to hyper because I noticed my body ballooning and then the weight dropping off. I also have nodules on my thyroid. The stomach thing has been bothering me for awhile and I feel full after eating a little and hardly ever have an appetite. I am not sure if that is lupus, hypothyroid or my herniated disc taking my stomach hunger away. I don't get it. I feel like there is something not working in my brain too. I take digestive enzymes and probiotics because I have intestinal problems, leaky gut that was causing my dizziness. But you mentioned you r not dizzy. Sorry I can't help more...maybe start with anti inflammatory herbs and teas and see if u feel better..odd that u r worse in fall...allergies? I take vit d every day..believe this is important. I take 5000 in a day. Seems like a lot, but my winter depression went away when I started d. Take care of yourself as best u can...

[omron]

Thanks again to everyone for the replies!

MaryF - I will definitely join Thyroid UK on here! I was aware of them but didn't realise they had a group here.

Natura - thanks very much for the kind words. My weight has always been super low, and recently went up a bit for the first time in my life. According to the BMI I'm now just outside the normal range for my height, so whether my thyroid has swung the other way at all in order to get that weight on. Still don't have much of an appetite but do seem to be able to eat a bit more. I tried some probiotics and they didn't seem to do an awful lot, although they were very tasty! I thought about allergies in the winter but I don't really have any. Everyone says Vit D is important so I'm definitely going to have to sort mine out. Don't worry about not being able to help, I realise I'm a very odd case and just appreciate anyone taking even the slightest interest.

Concerned - Yes, I have been tested for Crohn's. According to the doc I didn't have it. Same with Celiac. What do I eat and drink.. it's quite tricky to list everything. I tend to drink only fruit juices, as they're the only thing I really like (can't stand water, even though I know it'd be much better for me!) I think my diet is fairly good. Lots of fresh fruit and veg, organic too, very little amounts of fast food or ready meals.

I'm starting to sound like a broken record but I really appreciate all your replies and attempts to help!

[twist1]

Hi, am so sorry to read about the tough time your having. It's an amazing read, such strange reactions fascinating but also heartbreaking knowing the pain your going through, must be awful. I must admit Lupus does affect different people in different ways but I have never known of anyone with a regular pattern so suspect also that it is not Lupus. Which makes me sad that we still not been able to help in solving your cruel mystery.

I do know that the gut does play up with auto immune illnesses as a large part of the immune system is there and that having low levels of vitamins effects the body in strange ways.

It's odd you are affected mostly in winter, sounds a bit like S.A.D seasonal affected disorder but more extreme. But weird that you are having a smaller version of it every day between 12-5.

I know you have seen lots of specialists but have you had your hormones checked? I believe your a guy so it might sound strange but mine fluctuate all the time and I get some of the symptoms you describe. I don't believe it's what's wrong with you but it might help give more information to help towards diagnosis.

And finally the wild card I'm sure you've done it but have you tried putting some of your results into an internet search and seeing if it comes back with anything? Eg the one for alanine which is out of range

Good luck and stay strong

[sazzyb]

Interesting that you feel worse in the winter and improve during the warmer months. The colder weather can increase your body's need for thyroid hormone. Your thyroid works better when temps rise.

[omron]

twist1 - Thank you for the kind words. I have had some hormones checked and also believe it to most likely be a hormonal problem, but so far there has been no luck discovering what it is. I've tried the internet search too but no real luck with that.

sazzyb - I did once read something about the thyroid being better in the summer, which could explain the issue I'm having. I'll do a bit more research and follow that one up, thanks for that. Could end up being very useful.

[Lauri]

look for the video "under our skin" on youtube. Pretty sure you suffer from this disease. good luck x

[Larrylad123]

Hi omron my daughter was diagnosed with lupus last December and had lots of your symptoms photosensitivity being one of them lots of digestive problems and the heart pounding in her chest and pulsing in her head it took a long time to get the diagnosis remember the doctors don't no all the symptoms lupus brings and everyone is different remember lupus can affect any organ or organs in the body!!!

My daughter started juicing to help with the digestive problems and most of her symptoms have subsided!!!