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Discussion Starter · #1 ·
Hi there,

6 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 whether it might be thyroid or thyroid related?

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.

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.

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 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
 

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TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/
(Copy and paste into your browser)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

A couple of notoriously "around the globe" acute and chronic infections causing a loss of appetite symptom:
•flu
•mumps
•syphilis
•vasculitis
•giardiasis
•listeriosis
•AIDS/HIV
•pneumonia
•chickenpox
•strep throat
•yellow fever
•typhoid fever
•leishmaniasis
•gastroenteritis
•mononucleosis
•schistosomiasis
•cat scratch fever
•coxsackie disease
•hookworm disease
•Rocky Mountain spotted fever
•food poisoning ~ E. coli enteritis
http://www.healthblurbs.com/many-causes-for-appetite-loss-loss-of-appetite-not-hungry-no-hunger-anorexia-symptoms/

You will note as your read along that hypothyroidism is on the list. Symptoms can and do cross over. Many who are hyper gain weight and many who are hypo cannot gain weight.

Very concise; wow!! Welcome to the board.

Andy; when did you have the tests for ANA, EBV and Lyme Disease? Sometimes those antibodies are elusive. Also when you say test results were negative, do you mean absolutely zero or were some of these antibodies within the range or below the range?

I ask because a lot of docs will say negative when they are either below or within the range when the "truth" is, there should be no antibodies at all.

Have you been to the tropics or do you live in the tropics? As a child, have you been exposed and/or did you get the normal run of childhood diseases?

I am putting the link to this site above; it is really good..........and an excerpt is added but there is much more so go to the link, please!

It would be good to have antibodies run for the thyroid. I am putting that list above and I strongly recommend an ultra-sound of the thyroid as well.

PS: If you go to the link, all you have to do is click on each name and you get a definition. Real Easy!
 

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How long have you lived at the current location; anyone else sick there? Have you had antibiotics during or before these six years? How many cups of caffeinated coffee do you drink a day? What is your lifestyle & diet like?
 

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Andy, welcome! Wow...your story is truly fascinating.

Would you be able to post the results AND ranges for the tests you've had where you are high or low out of range? I'm curious to see how far out of range you are on them. It looks like that would be your Cortisol and all of the tests on the last part of your list.

I am also curious about whether you've ever had these tests done "in the moment" when you're having one of your reactions? For instance, could they have you watch TV for a few minutes, then do some testing while your body is reacting?
 

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Thanks everyone for your replies! I'll take each one individually.

Andros - I had the tests for ANA, EBV and Lyme quite a while ago. ANA and Lyme were probably 3/4 years back, EBV was even further and probably close to 6 years as I had it done right at the beginning. I've listed all my test results again with ranges below, so that will show if they were absoloutely zero.

I live in the UK, but have been to Jamaica in the past. That's the most exotic of all locations I've been to. As for childhood, I'm pretty sure I got most of the normal diseases. Although I don't think I ever got Chicken Pox.

I'll definitely have a look at that link, thanks! And I'm looking at getting both the thyroid antibodies and reverse T3 down in the near future. I still can't believe I've had such a vast array of tests but no-one has considered the thyroid antibodies. Very strange.

Swimmer - I've lived in the same location my entire life. Bizarrely, 2 other people in my road have/are sick. Both have been diagnosed with ME/CFS. One has recovered, the other is still seriously ill.

I've had antibiotics once during the illness, maybe twice before being ill. However, when I took the antibiotics whilst being ill they affected me strangely. I developed odd raised little lumps on my tounge, and my doctor prescribed Nystatin (which I think is for Candida, although I may be wrong).

I never drink coffee or tea. No caffeine at all. Not particularly because it makes me ill but I just don't like it.

My lifestyle is, well, restricted to say the least. I haven't been out of my house aside from going to doctors appointments for 6 years. I can't go in the sun without getting severely ill and am unable to do any form of exercise. Whatever is wrong with me is very, VERY debilitating. As for diet, I think it's good. Lots of fresh food, lots of organic, lots of fruit and veg.

Octavia - I'll list my test results again with ranges:

Cortisol - 901 NMOL/L - Range 180 - 620.

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. (No figure or range)
Smooth muscle antibodies - negative. (No figure or range)
Mitochondrial antibodies - negative. (No figure or range)
Gast PL Cell antibodies - negative. (No figure or range)
Liver Kidney microsomal antibodies - negative. (No figure or range)
Endomysial antibodies - negative. (No figure or range)
DNA binding antibodies - negative. (No figure or range)
Borrelia (Lyme disease) antibodies (No figure or range)
Infectious Mononucleosis - negative (No figure or range)
Coxsacki B Virus - negative. (No figure or range)
Toxoplasama antibodies - negative. (No figure or range)

Rheumatoid Factor - <7.88 (No figure or range)

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

(Sorry if I've missed anything out. Just let me know and I'll make sure I add it.)

As for having tests done in the moment - I've had a cortisol saliva test done where you collect 4 samples throughout the day. One of those overalpped with one of my reactions, a very severe one in fact, and it showed a HUGE spike in cortisol after it had happened. I also did a self-test where I looked at a computer screen just before doing one of the saliva samples and that came back raised too. So I'm certain that these weird reactions are down to some sort of overstimulation. I'm sure my body is viewing these things as "stresses" and pumping out tons of cortisol and adrenaline when exposed to them. So when I look at a screen, for some reason my brain processes it as a stress and tells my adrenal glands to release cortisol and adrenaline, and in turn I get all those symptoms. It's all insane. If it wasn't happening to me I wouldn't believe it!

Just to quickly add, I've had one new symptom that has developed during this winter, and it's slightly embarrassing to talk about but seeing as it's quite strange there's a chance it might point to something, I'm going to put it out here and see if anyone might have any ideas..

I've developed a very, very high libido. I've read that with so many illnesses that your sex drive tends to go the opposite way, but mine has just gone through the roof. It's forever on my mind and dominating my thoughts completely (insert joke about that being normal guy for a guy here). I'm extra sensitive to any sort of stimulation in that regards as well, if you know what I mean. I also suffer the same reaction after an orgasm as I do after getting nervous/stressed - increased inflammation, nervous system problems etc. (Sorry if that's all getting a bit personal)

Thanks everyone for the replies and interest shown, I really appreciate it!
 

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Welcome! :) And another thanks for taking the time to share all of that info and data from the get-go. It helps us immensely! Amazing you have been able to get all of those tests completed -- the docs have definitely turned over a LOT of stones. As another guy who has gone through six years of illness, I can definitely relate. It's very frustrating, to say the least. I'll throw out some rough ideas below...

What have the docs said about your Cortisol being elevated other than "adrenal fatigue"? Has anyone mentioned looking at Cushing's Disease (overactive adrenals)? Have they done a test for catecholamines (dopamine, norepinephrine, epinephrine, etc.)? (That usually involves standing up for a while before the blood draw.) What's interesting is that your fasting glucose is okay, but yet you need to constantly eat food, almost like you're hypoglycemic. And strange about not being able to go out into the sun. I think you're right in that something was hiding in the background, and then somehow flared up.

How about testosterone? Have they tested that at all -- ideally: total testosterone, free testosterone, SHBG, and E2 estradiol levels. Strange about your high libido. I would not have expected that, either.

I echo the other posters in suggesting getting the thyroid antibodies tested, if they haven't already. TPO Antibodies, Thyroglobulin Antibodies, and Thyroid Stimulating Immunoglobulin ("TSI", *not* the same as TSH). It's worth looking to see if Hashi's or Graves' might be a partial culprit here.

Have you consulted a neurologist for any of this stuff? It would be interesting to see what they would say. (I'm guessing you have, since you had the MRI.)

Any infectious disease doc consults? (They can sometimes be experts in looking for hidden illnesses.)

Ever have a sleep study done? Do you have any known allergies or sensitivities to foods, the environment, etc.?

Like Andros mentioned, the antibodies for stuff like Lyme can be tough to uncover. There are quite a few other strains of Lyme, many of which are not tested for. As I'm sure you know, Lyme can really do a number on you and affect a lot of bodily systems and functions.
 

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Discussion Starter · #7 ·
Bigfoot - amazing post, thanks so much!

Doctors haven't really mentioned cortisol at all. When the synacthen test came back normal they've basically ignored it since. I've looked into Cushing's but from the symptoms you usually get (high blood pressure, weight gain, red round face etc.) I don't seem to really match. They did mention catecholamines but said that the metadrenalines were better and more sensitive or specific when looking for tumours, which I guess was their main aim. I haven't had my catehcolamines done in the urine, only blood during a tilt table test for POTS where they came back normal even though I was severely nervous. I've considered getting the urine version done privately, and probably will do so now, just for my own sake.

I have had my testosterone tested, twice in fact. First time it was 16.3 nmol/L, second time 11.8 nmol/L, and the range 8.4 - 28.7. That was a while ago now though, so it could be much higher now (if you were considering that to be causing the high libido).

In regards to neurologists, I've just spent a couple of years at the National Hospital For Neurologoy and Neurosurgery in London being seen by (apparently) top neurologists, who spent those 2 years ignoring the majority of my symptoms and focusing entirely on diagnosing me as having POTS. When they eventually got that diagnosis via a tilt table test, I then pointed out that I had the continually raised levels of ESR, CRP, Neutrophils etc. and they had to accept that the POTS was secondary and something underlying was causing it.. which meant they then dismissed me and said I had to go eslewhere. So that was a complete waste of 2 years, and the conclusion they eventually got to I could have told them on my first visist! So frustrating. Oh, and the MRI wasn't actually done by the neurologists, but by endocrinologists to look for Pititary tumours I believe.

Have seen an infectious disease doc, who was useless. Offered nothing accept to say that it wasn't an infectious disease then spent 20 minutes telling me why it was Chronic Fatigue Syndrome.. which it isn't. So I have seen one, but would be willing to see another as I felt the first was awful.

Not had a sleep study. Considered it though. Would it be worth my while do you reckon?

I have quite a few allergies - all fruits actually. I can't eat apples, pears, peaches, apricots, blueberries.. although strangely only when fresh. If they are cooked then I can eat them with no problem, so whatever it is that I'm allergic to in them it is obviously destroyed/neutralized by the cooking process. I also had an allergy test come back positive for nuts, but up until then I'd eaten nuts all my life and had no reaction, so am not sure about that one.

I've been doing some more research on Lyme today and found a few things about people suffering from it seem to get worse in the winter, so that could be something. Although that could just indicate my body is struggling more in the winter because of stress, and not necessarily specifically Lyme.

Will definitely look to get all the thyroid tests mentioned done.

Thanks again for the help and replies, it's all hugely appreciated!

(As you can probably tell by my tone throughout this post, I haven't had much luck with doctors.)
 

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Thanks for the compliment -- and thanks for some additional ideas I may have to look into myself!

I have to say, despite you not having the best luck with doctors, you've definitely had some of the best tests and labs done in searching for answers. Interesting about the POTS diagnosis. I'm really surprised that they did a tilt-table test; even more surprising is that they found one to use! Did they have to pull it out of the closet, read the manual, and brush the dust off it? :D (Just kidding there.)

The latest theory I have seen is that with testosterone, it's more of an "on/off switch" at a certain level, than corresponding to an actual number. So while your testosterone is technically on the lower end, and maybe could stand to be optimized, it doesn't seem to be giving you any problems in that "department" on a daily basis, so to speak.

I think the sleep study is something worthwhile to investigate if you snore (or someone complains that you do), or catch yourself gasping for air while sleeping, have a really thick neck, wake up unrefreshed and tired, have morning headaches, low energy, etc. Sounds like a long shot at this point, but since you are dealing with a huge amount of fatigue, it does beg the question.

As far as Lyme goes, you might look into the more thorough and specialized "CD57" testing. Not sure if insurance covers that, or what the cost might even be. I also think there is some disagreement between very clinical doctors and outside-the-box doctors on how useful it is. I haven't had much luck finding a lab locally that can run it.

My personal opinion on CFS/ME is that it's less of a diagnosis, and more of a "we just don't know why" response. Something must be underlying it, some condition, disease, illness, etc. They just can't (or more likely, haven't) pinpointed its causes yet. I can tell you that thyroid conditions can cause also some wacky stuff, and I think most folks here could attest to that. I'm glad you're considering getting more detailed thyroid tests. If you do, you might also ask to have Free T4, Free T3, and Reverse T3 tested, in addition to the antibodies.
 

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These symptoms coming over you at the same time each day really sounds like a blood sugar problem. Do you have the ability to check your bs at home? We have the little gizmo and tabs from Target and a couple times when I felt weak and washed out, I checked my bs and was relieved to see it was normal for that time of day. Some people are really sensitive to meal timing and do have low bs shortly after noon. Try to get your bs tested when you feel like that.. or maybe you have already and I missed it in one of the posts.
 

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So, I'm not saying that this is "at all" your problem; however, you mentioned that your doctor treated you (nystatin for candida) and I would encourage you to look up "monolaurin" and read about it, see if it's for you. Monolaurin is very interesting -- it is also "lauric acid" and it can help candida, it can help "crack the shell" on EBV (I know you said you didn't have that way back when) but it's something that might be worth looking into, very expensive, and can be ordered online. (You can research this in pubmed -- there are actual "studies" in medicine on this stuff and what it can do.) It's made from coconut. -- What I'm thinking here, is that maybe a very small percentage of what is happening to you might be related. But when it comes to white blood cell counts - not having anything to do with what I'm talking about. But since you mentioned the candida, you could still have that.

Regarding the people on your block who are sick, is it the same as yours? Is it similar? Have you studied the area in which you live, how far you are from a landfill or a chemical company of the past, was there a company near your location in the last 200 years that may left some extreme pollution that is undetected?

Finally, have you considered going to a hematologist? (Having your blood checked for rare diseases etc.)
 

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http://labtestsonline.org/understanding/analytes/esr/tab/test/

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
(Copy and paste into your browser)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

TBG (thyroxine binding globulin) up, hypo............down, hyper
http://www.nlm.nih.gov/medlineplus/ency/article/003374.htm
(Copy and paste into your browser)

TBII
http://www.ncbi.nlm.nih.gov/pubmed/9364248
http://en.wikipedia.org/wiki/Anti-thyroid_autoantibodies

It would not surprise me if you were hyperthyroid. Increased libido, intolerance to sun and a bunch of other things suggest that it needs to be ruled in or out.

And you definitely need an ultra-sound of your thyroid. Absolutely!

And I am furnishing a link where in the upper left hand corner you can enter the name of each test you have had. I did the ESR but I don't have time to do all your tests. You might "hit" on something if you have the time to do this.

Link above!
 

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On the flip side of the coin; Addison's. I hope not but things have to be ruled out.

And consider that the thing about symptoms lists is that they are guidelines. No 2 people have the same identical symptoms yet they may have the same medical condition.
 

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Discussion Starter · #13 ·
Once again thanks every one for all the replies!

Bigfoot - interesting about the testosterone. Both times I had mine checked were during the winter months, which is when all my blood tests are at their worst - inflammatory markers, anemic etc. and even my TSH seems to drop during that period. So I wonder if my testosterone also follows that pattern (I don't know if testosterone would lower from just general ill health, or in my case inflammation) and had I been tested in the summer it would be a better figure. But as you say, if it isn't giving me any problems then it's not something to be particularly worried about.

I do snore and wake up feeling unrefreshed, and it's something I haven't had done, so definitely worth a shot. Also, it's just reminded me of something - I had a 24 hour ECG to check my heart as it beats too strongly all the time, and for a period during the night it picked up my heart beating, in the words of the cardiologist, "very erratically". He did nothing except offer me beta blockers, which I didn't take as my blood pressure was low enough as it was, but there was clearly something going on during my sleep. So maybe the sleep study could flag something up.

Will look into Lyme more. Been searching for Lyme specialists just to see if they thought on the face of it without the tests that I sound like a possible case. But from the sounds of it I might struggle to get someone within the health service to be completely on-side with all the testing. Going to follow it up as much as I can though.

I'm in the process now of getting the Reverse T3 and Antibodies tests sorted now. I've had my Free T3 and Free T4 tested in the past (T3 - 4.8 PMOL/L - Range 3.5-6.5 and T4 - 19.4 PMOL/L - Range 12-22 ), do you think those sound normal enough or should I get them retested?

ssMarilyn - I've thought about getting one of those blood sugar detector thingies.. not sure what the technical term is! I've always held off as I've never been sure that it was blood sugar, but I've just looked online and they don't seem that expensive so it's got to be worth it to have a definitive answer. It may well be that I'm super sensitive to meal times and getting a strange or over the top blood sugar reaction, and being able to check will tell me for sure one way or the other.

Swimmer - I'll have a look into monolaurin. I've spent some time looking up candida before and it seemed like it could be part of what is going on with me, and did try to do one of the home test they recommend where you spit in some water and leave it to see if it creates strings (or something like). I did that and it didn't come back positive, but it hardly seemed the most scientific test!

The people on my street is really, REALLY strange. We're all similar in that we've suffered or are suffering from illnesses that no-one can diagnose, or are just putting it down to CFS/ME, but in terms of symptoms we seem quite different. In fact the person who got ill first has since recovered and seems to be back to close to full health. I've got all my bizarre symptoms that no-one has seen and the final person seems to be a more recognizable ME/CFS type sufferer - bedridden with fatigue, unable to do anything because of weakness/fatigue, sleeps all the time etc. So it's difficult to work out the connections. I haven't done any research into anything you mention, but will do so now! It just seems so weird only a few of us would get ill, and all at different times. Like I said, an extremely weird situation.

And I have seen a hematologist, but a long time ago. In fact he was the first specialist I saw as my GP thought I may have leukemia (fatigue, very pale, raised white cell count etc.). He did some fairly standard blood tests along with EBV and Toxoplasmosis and then just told me to go back to my GP. Worth seeing another you think?

Andros - I've wondered about Hyperthyroid as many of my symptoms match. All my life I've been so underweight, unable to put on weight, but up until getting ill I was full of energy. In fact I used to do things too fast! My parents were always telling me to slow down, and it's the same now. I feel ill all the time but I move too quickly and talk so rapidly that I often have to repeat myself as people don't catch what I say. Again that feels like adrenaline to me, but I gather would also go along with hyperthyroid (I think?). I didn't realise hyperthyroid made you intolerant to the sun though? Does it make people actually ill after going in it? Also, could I have a normal heart rate and low blood pressure with hyperthyroid, as I thought they were usually increased?

And yes, definitely going to get the ultrasound!

I can rule out Addison's though, as I had the Synacthen ACTH Stimulation test and it came back fine. But cortisol was nice and high and then increased even more so. I say nice and high, but really I've always thought it was too high, but no-one seems bothered by it.

And thanks for the links too! Going to bookmark everything so I can make sure I cover it all.

I'm repeating myself now but thank you for all your help! I'm sorry my replies aren't that quick but I will always get back to anyone who replies, I genuinely appreciate it.
 

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I'm in the process now of getting the Reverse T3 and Antibodies tests sorted now. I've had my Free T3 and Free T4 tested in the past (T3 - 4.8 PMOL/L - Range 3.5-6.5 and T4 - 19.4 PMOL/L - Range 12-22 ), do you think those sound normal enough or should I get them retested?
Your FT3 was sitting at 43% of the range. It's suggested around here to shoot for 50-75% of the range, which is probably a good goal to start with. The Total T4 test doesn't give us the whole picture, since it includes bound and unbound T4 hormone. Extra labs never hurt (well, sometimes, LOL), but I personally would be more interested in seeing the results of the antibody tests and ultrasound first.
 

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Omron - have you tried a gluten-free diet? There's a lot of controversy about gluten sensitivities (even outside Celiac disease), but I've had and heard of enough experiences to believe we don't fully understand the effect of allergies.
 

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The first thing I thought while reading this was adrenal fatigue, and then I saw you were diagnosed. I highly recommend continuing treatment for that. There are many different treatment plans, and just because one didn't work for you doesn't mean nothing will. It won't just go away on its own. I have been taking pregnenolone for 3 months and have improved significantly. If you're still suffering from this, you should really take a second look at that. Did you take the 24 hour saliva cortisol test?
 
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