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Chronic Fatigue Syndrome - Some History, Labs And Advice Wanted On Getting Labs

Discussion in 'Blood Work, Labs' started by Rad, Feb 7, 2017.

  1. Rad

    Rad Member

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    Hi all, I'll keep this as brief as possible.

    So in 2007 (I think!) I tried a modified Art De Vany paleo diet. I didn't make it as extreme as he did. I had regular addition of sat fat in small but reasonable amounts. Breakfast was meat and watermelon. I started thinking I'd only do breakfast and slowly add the other meals in but the immediate hunger quelling caused by the breakfast meant that I was eating only carbs in the evening for the first 3 days and none after that. Meal wise anyways. Art said empty calories from beer and wine were good so I would have a can or glass periodically.

    I started losing weight from day one. Over the next 3 and a half weeks I lost 3 and a half stone (49lbs).
    At age 18 (40 now) the doctor told me that at just shy of 14 stone (194lbs) I needed to lose weight. I had noticed a slight rounding of the belly but put this down to chi gung/abdominal breathing. No overt fat anywhere and slim compared to after the exercise that was to come. I started cycling and lifting dumbbells at home periodically and put on 3 stone in short order, bringing me up to 17 stone (238lbs). From then to 2007 I weighed 14 stone whenever I wasn't exercising.

    When I started the paleo, I went to 10 and a half stone (147lb). I had a good summer on the diet, maybe 3 months. As I was losing weight so quickly I added in stopped trimming the meat and went for fattier cuts. When I went out for the evening, I would drink plenty of alcohol, the volume going up considerably when I started looking skeletal. Lifelong need to pee many times through the night stopped within days. Even the first night it was vastly reduced until night 3 or 4, I no longer got up at all.

    By autumn I was feeling cold at night and multiple blankets couldn't keep me warm. I was eating legendary volumes of food but continuing to get thinner. Too much meat I figure. And obviously no carbs. over Christmas I allowed myself to eat all the goodies. No limits but this only increased the weight loss speed.

    Some time just before Spring, having returned to a paleo with the addition of some root veg and very occasional pasta, I went to the bakery. Why this didn't happen at Christmas I don't know but I ate a croissant or two and felt the blood flow return to my brain and there after returned to my normal eating pattern. It took me until about autumn 2009 to return to 14 stone (194lbs)

    Throughout the period I 2007-2008 I had three courses of antibiotics for an abcess on the natal cleft (inside arse/ass cheek) in the same position as a prior surgery for the same thing. I didn't put it together at the time but realised later that the antibiotic doses coincided with me starting to fall ill after going to the gym. At first it was a few days after a session - a cold or something that felt more like a flu. Probably around the second dose, this shortened to the same day then to wthin a couple of hours. I have never been one to overtrain but could see myself falling ill after exercising so cut right back on visits to the gym. It made no difference.

    In November 2008 I gave up work as I felt that my constantly sh***ing myself, on the job as it were, was unprofessional. This was from the last, even stronger dose of antibiotics about 2 months earlier. The last course had caused gripes, alternating diarrhoea and constipation and whiting out from the pain. I ended up resolving the issue myself with systemic enzymes, using them to lyse away at the scar tissue.

    As I continued to fall ill when exercising, I discovered I could stop the illness by taking the enzymes before the gym. Once they had sorted the issue of the abscess, they seemed freed up to work elsewhere and I used to wake up feeling so relaxed I didn't want to get out of bed. I ended my use because I had no money and couldn't afford them.

    During 2009 I lived in a damp flat and ended up getting something on my lungs, which I eventually managed to clear. I eventually ended the bowel flip flopping and was just left with minor tiredness but a genral sense that something was incredibly wrong. Also a constant anxiety and paranoia. I tried tricyclics but they didn't help.

    Moved somewhere better in May 2010 although this was about the time I began to develop classical cfs symptoms. From May to may the nest year, on top of the constant sense that I had the flu, I also had illnesses coming and going very frequently. I added up that it was 9 and a half months that first May to May, 10 months the year after that and the following year, 10 and a half months. After that I suddenly became unable to get ill for the first time in my life.

    Quick note: Induced at birth because they thought I was 3 weeks late but ten realised I was 2 weeks premature. Not sure what happened there. Apparently a happy child until about 7. I know I was desperately stressed by abuse at age of 5 at my pre-school. I remember hating early school and until the age of 10/11 used to just look at the page in front of me and hope the teacher didn't talk to me. Learnt to lie very well or look angelic, from the age of about 9, as this gained me enormous control. Given glasses at age 7 which is probably when my parents noticed I became a very unhappy child. By 8 I was in my bedroom making the decision that since I was hurting so much and no-one was helping or listening, that I would no longer listen to what adults had to say about anything. I won't carry on, just to say I was a high strung, anxious and stressed child and ill more than anyone else I knew.

    Age 14 a period of intense practice of Ninjutsu, mostly one on one, due to no-one else coming to the class - what the **** is ninjutsu. I was beaten, strangled, mangled repeatedly for about a year and a half and suddenly started understanding my school work and I realised that I had been living with a terrible cloud around me for as long as I could remember. I was suddenly without the numbing that had been holding me back. Unfortunately I had to give up the class and slid back. Oh for my own adults eye view back then.

    At 17, having left school I undertook intensive chi gung in the back garden, early every morning. A ball of intense concentrated heat would build in my lower belly, flow down past my groin, between the legs and start to rise up my back. The stress left me again and I was free again but again I stopped the practice and it went away. Why? Because I had no friends and got invited out drinking one day. I felt so good at the time (and if your young I would definitely recommend the practice of Zhan Zhuang standing chi gung) that I thought I would be okay without practice but after a few months the good feeling left under a sea of hangovers and abuse. I got invited out just as the energy was starting to move into the base of my skull. I always wonder what would have happened if I had squeezed out a couple more weeks practice.

    Two more times out of the cloud came pretty close together. Using Holosync meditation cd's was one and the other was reading (gasp!) Dr Batmanghelidj's Your Bodies Many Cries For Water and thinking that hidden dehydration made a lot of sense. The water cure was amazing as my thirst reflex returned. I couldn't maintain any of my typical stresses but there was the issue of being completely out of sync with everyone I knew. No more socialising. I had to end the water only lark. The Holosync backfired when the denizens of my repressed feelings came shooting out and I couldn't deal with them.

    So 2010 onwards, I've had the continual flu like feeling with illness on top. When an illness would leave my temperature would rise up and a few days before I would fall ill my temperature would drop. No exercise required. I don't have an accurate readings as the thermometers I had were all wrong but I was definitely very low temperature anyway. I reset it in 2015 with Steve Richfield's method, apparently. It's been really stable, although intervening with supplements can cause a temporary rise or fall and periods without are always more stable.

    The reset bought me back to 37 with a period of burning hotter in the afternoons for a short period after resetting. My pulse was 89 before and 85 after the reset. Eating food and drink doesn't cause any drop so no apparent cortisol issues, I'm guessing. Fingertips are always excellent temp. Still feel ill permanently.

    Late 2015/ early 2016 I had a period in which I was getting adrenaline rushes (I presume). I couldn't lay computer games as I would get intense bursts from the concentrating. This went away after about 6 months.

    Late 2016 year I was been getting intense feelings of tiredness from conversing or writing, right in the brain space. A sense of the hemispheres being cleaved in two. Pressure up the back and neck.

    I have refused to overdo it, through out this many year period. The few times I have overdone it physically, I get the classic feeling of weakness in the muscles then throbbing ala lactic acid build up and then a month or two to recover. I make sure this almost never happens as the recovery is requiring consistently longer time. Curiously I can walk into town and back again everyday without any getting out of breath and hills are no problem. I speed past people, especially up hill. It wasn't always this way but the intense molasses feeling of tiredness that I used to endure only happened whilst I was in the three years and one year after, of constant illness. However I couldn't walk down town and then straight home as that would be overdoing it. I have to stop, sit down and have a coffee and then I can walk home up a hill with no penalty. There is an almost exact distance at which I suddenly feel the energy drain from my limbs.

    I'm able to type this much because I started intranasal insulin at the end of November. And it's a better day than usual.

    I've lost my thread so I'll post some labs now.

    There's some obvious values that Ray and all you forum members will spot are off.

    21st November 2016

    Thyroid function test
    -SERUM TSH - 4.62miU/L - tests over 8 years show variance between 2.3 and 5.3
    -SERUM FREE T4 - 17 pmol/L or 1.32ng/dl

    Hba1c - 26mmol/mol

    Vitamin D -114nmol/L

    Plasma fasting glucose - 5 mmol/L OR 90mg

    Serum Lipids - Abnormal
    serum cholesterol 5.2 mmol/L OR 201 mg/dL - down from 8mmol/L using glycine and taurine
    serum trigs - 1 mmol/L
    serum hdl cholesterol 1.4 mmol/L
    Calculated ldl level 3.30mmol/L
    SERUM CHOLESTEROL/hdl 3.7mmol/L
    ALL ABOVE FASTING SAMPLES
    Se non hdl cholesterol 3.8mmol/L

    Liver function test - abnormal
    serum total bilirubin - 11 umol/L
    serum alkaline phosphate - 57 u/L
    serum ALT 13u/L
    serum albumin 52 g/L

    Urea and elctrolytes
    serum sodium 144mmol/L
    serum potassium 5.1mmol/L
    serum urea 3.1mmol/L
    serum creatinine 93umol/L
    glomerular filtration rate - 78Ml/min/1.73m2

    Full blood count Everything fine apart from Mean Corpuscular haemoglobin 32.6pg - this is always high over the last 8 years

    All tests in range on 04/Jan/2016 except for usual MCH.

    TSH though was 2.65mu/L -

    Although old, these are last test results to include prolactin and testosterone

    28th June 2013 serum cortisol 404nmol/L
    serum TSH 2.33mU/L - that's about the lowest it's been over 8 years.
    serum prolactin 252 mU/L
    serum testosterone 23.02nmol/L

    Vitamin b12 across last 8 years always off uk range, bwteen 692 and 708pg/ML

    Last iron levels from 2013 show trend to wards high serum iron over years.

    serum iron level 33.9umol/L
    serum transferrin 2.1g/L
    SERUM TIBC 48UMOL/L
    transferrin saturation index 71% - I've asked for help understanding this from numerous sources but no banana.

    Really beginning to lose it having typed so much so finally can anyone give advice on labs to get. I was hoping the results listed here (November 2016) would have been more in depth but it was my first meeting with the doctor and they usually just do the basics at the start.

    I'm thinking I need more complete thyroid. I'm reading suggestions of total t3 and total t4 being enough. Is this right?

    I'm thinking active b12 (holotranscobalmin) to see what form the b12 is in. Apparently if it is as high as mine then you never find that it is in an inactive form. This happens only at the lower levels but I just want to see to make sure.

    Saliva cortisol test but what sort?

    Sex hormones? Which ones. I only have the one testosterone and the area could surely do with more info. Do I need prolactin? I'm lucky enough to have won some money so I can finally afford some tests although I am by no means made of money.

    I heard about Medichecks on here and there prices seem very reasonable so if anyone wants to have a looksey and tell me what's good on there, that would also be great. They offer the total t3 and t4 which is good as well as thyroid tests.

    I feel suitably nauseous that I'm going to stop now.
     
  2. Dan Wich

    Dan Wich Member

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    :lol:

    That's the impression I get (that those plus TSH is supposed to be a good way of judging thyroid function). I also got a reverse T3 test once to check for issues with T4 conversion.

    I've found prolactin useful as a general "how things are going" indicator (along the lines of some of Haidut's posts).

    I assume you're in the UK? I've been jotting down UK blood test providers (in addition to Medichecks), maybe some are worth a look:
    Genova
    Purehealth Clinic (although the store seems broken at the moment?)
    True Health Labs
    Health Screening Blue
    Private Blood Tests Nuffield (have to go to a Nuffield hospital for the draw)
    Blue Horizon Medicals

    I'm not in the UK though, so for all I know those are secretly kidney-stealing operations.
     
  3. OP
    Rad

    Rad Member

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    Thanks for the reply, Dan.

    I think I'll just get the whole thyroid shebang and add on the total t3 (it includes rt3 if I remember rightly). I wasn't sure about rt3 because some posters say that it's only necessary to understand the free t3, if I'm not mauling what people are explaining, which I may well be.

    Annoyingly, my mum has been paying out for a type of health insurance that would cover me for all these tests at a private hospital but to use it you have to show that you can't get the help you need on the nhs and the doctors seem unwillingly to admit that they won't give me the tests that they are refusing to give me! It's insane.
     
  4. OP
    Rad

    Rad Member

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    Just another shout out about my weird situation, or not understood situation.

    CFS symptomatically, though more classical in the past.

    Body temperature - average 37c, pulse 80-85.

    Temp on waking 36.8c until first food then goes up so no stress reduction in temperature.

    Temp peaks rises over the day to 37.1c then returns to 37c and when I need to go to bed it's 36.8c or 36.9c.

    Fingers and feet warm. Can read healthy temperatures on fingers so good according to Peat.

    Labs show top or out of range Tsh so too high according to Peat.

    Cfs linked to hypometabolism so why are my temps so good. No obvious stress response keeping them up. No drops on eating food.

    I'm reporting oral temps. Armpit not a good site for readings as very variable. Anal :):jawdrop:!) reads good as well.

    What am I missing here? Was going to get complete thyroid labs but then realised that requires giving blood somewhere which makes it more awkward.

    Could I somehow have an area that is unreceptive to action of thyroid and how could I check this? I reset temps with Steve Richfield reset but very easily and quickly so I only required a little nudge.

    If mitochondrial as some suggest, why are temps so good? I'm going round in circles due to limited knowledge. I could try supplementing with thyroid or more thyroid as I have tried small doses and found an improvement in hrv. It doesn't affect my temps though so far have only used small doses as I don't want to add more if everything is good, except for lab readings.

    Any thoughts?
     
  5. OP
    Rad

    Rad Member

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    Should add aspirin knocks oral temps up to 37.2c so there aooears to be room for improvement or perhaps that's overdrive?

    Maybe you can reset a temperature to somewhere lower than optimal. I don't think that's the case here though. I moved so quickly that I think I just needed a nudge and combined hot showers, coffee and niacinamide did that.
     
  6. warrenbuffet

    warrenbuffet New Member

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    What is your diet like? This is a huge area for improvement if it is not optimal.
     
  7. OP
    Rad

    Rad Member

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    It's not bad at all and has been for years.

    I tried the milk and oj thing and it didn't work out so well so I'm relying on starches with smaller amounts of milk and juice. Plenty of protein. Gelatin causes joint pain so having to avoid but been using glycine instead as react well to it and good with the oj for endotoxin.

    I think quality of UK food is good if you avoid the centre of the supermarket.

    I made a cheesecake recently and it went down very well Created a feeling of such satiation and ended up making a few and then suddenly lost interest after a few weeks. I seem be getting much more of a sense of what I need when I need it these days. One minute it's lots of sugar, then lots of starch then over to fat briefly. Some days I just need tons of meat. It all seems very much based on the obvious needs, though sharing a life with someone and their weird fish and vegetable desire means a little more compromise than I like. I think I became more open to these nudges after raising my body temperature.
     
  8. HLP

    HLP Member

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    Plenty of protein? What is your source? I'd watch the starch except for potato until you can stabilize yourself. Fruit? Roots? What is your quality of sleep like? I had CFS for over 40 years and I have no residual symptoms at all now. You ARE in the right place to get help for sure.
     
  9. HLP

    HLP Member

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    Maybe too much phosphate. More dairy, less meat maybe. Fine tuning IMO.
     
  10. OP
    Rad

    Rad Member

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    I'm certainly have too much meat. Once a day for dinner and not of the best kinds because I was going with what was cheap. Main intake of protein is Brie as I can get that reasonably cheaply, though I should probably add back some Cottage Cheese.

    I think I'd have a finely tuned sense of how starch effects me if only I wasn't living in this semi-conscious fuzziness. When I am most coherent I become aware of the degree of bloating and aggravation from starch sources. I just forget to do it or can't find the energy for such acts. Brown rice is very soothing but too much arsenic.

    I drink juice, OJ, apple or apple and mango. I tend to have a selection of fruit on the go but the local supermarket is known as 'mouldy' Morrisons. Fruit is expensive there and doesn't promote enthusiasm. I eat a lot of dried dates though. Very cheap. And clear honey and sometimes raw.

    Temperature appears unaffected by what I eat. I was on a diet of rice cakes, beans, turkey, chicken and pork with potato or rice, which I found very soothing but non-Peaty. It was cheap and didn't cause any issues - that being the main reason for it's choice. I've moved away from that now though.

    Roots are potato and sweet potato.

    Sleep is rock solid unless I aggravate my gut, though I just aggravated it recently and it looks like I've cracked that one as well as i still slept perfectly. Just took some short term, high dose probiotics and when I stopped the changes held.

    I was taking the intranasal insulin until recently but was worried about it working in an anti-Peat direction. I started taking the thyroid solution that I occasionally applied transdermally, internally and only the same 2 drops and it has meant I have an even better method of stopping the brain tiredness I get. It didn't do that transdermally. I dropped to one drop and it came back again partially. It seems that even with my temperature being rock solid and no evidence of cortisol/adrenaline support that rate, there is something in the thyroid solution that is giving me an additional boost. It also makes me feel like I am in control where as usually I'm along for the ride. And more relaxed with warmth in new areas.
     
  11. tomisonbottom

    tomisonbottom Member

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    Interesting......have you found that's the best way check for t4 conversion?
     
  12. Dan Wich

    Dan Wich Member

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    I guess it's probably more immediately useful to check whether T3 levels seem proportional to T4 levels, and only bother with reverse T3 if there's not a plausible reason they're out of whack. But I'm still learning a lot of the thyroid bloodwork stuff, so maybe someone else will chime in with a better answer.
     
  13. tomisonbottom

    tomisonbottom Member

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    What did you do to get rid of it?
     
  14. Wichway?

    Wichway? Member

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    @HLP I'm curious as well about how you cured your CFS?
     
  15. HLP

    HLP Member

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    I believe I was just another case of hypothyroidism that was not diagnosed.
     
  16. Gabriel Dell

    Gabriel Dell Member

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    @HLP Can you briefly explain how you cure your CFS ?
     
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