Help with test results

[maryb]

Just got my blood test results back. GP said gaily (honestly) everything absolutely fine, which is good don't get me wrong I'm not wanting poor functioning on anything, but as I said to her.What is causing my legs to be swollen?. Probably just a bit of fluid retention she said take some diuretics.
Okay so why have I suddenly started retaining fluid, she couldn't answer just repeated everything is looking fine. So I would be very grateful if people here can have a look at the following and see if anything jumps out at them. Or any observations in general would be good.
Sorry no reference ranges (is this a new way of giving copies to NHS patients) so difficult to interpret them myself.


13 September 2012



06/09/2012 Serum ferritin = 32 ug/L

06/09/2012 Serum folate = 10.5 ug/L

06/09/2012 Serum vitamin B12 = 1019 ng/L High

06/09/2012 Percentage basophils = 2 %

06/09/2012 Basophil count = 0.1 10*9/L

06/09/2012 Percentage eosinophils = 4 %

06/09/2012 Eosinophil count = 0.2 10*9/L

06/09/2012 Percentage monocytes = 5 %

06/09/2012 Monocyte count = 0.3 10*9/L

06/09/2012 Percentage lymphocytes = 46 %High

06/09/2012 Lymphocyte count = 2.5 10*9/L

06/09/2012 Percentage neutrophils = 43 %

06/09/2012 Neutrophil count = 2.3 10*9/L

06/09/2012 Red blood cell distribution width = 12.9 %

06/09/2012 Mean corpusc. Hb. cone. (MCHC) = 30 g/dL L o w

06/09/2012 Mean corpusc. haemoglobin(MCH) = 29.6 pg

06/09/2012 Mean corpuscular volume (MCV) = 99 fL

06/09/2012 Haematocrit = 0..386

06/09/2012 Red blood cell (RBC) count = 3.9 10*12/L

06/09/2012 Platelet count = 246 10*9/L

06/09/2012 Total white cell count = 5.4 10*9/L

06/09/2012 Haemoglobin estimation = 11.6 g/dL

06/09/2012 Blood Glucose =4.9mmol/L

06/09/2012 GFR calculated abbreviated MDRD = 71 mL/min

06/09/2012 Serum TSH level = 3.88 mU/L Original Result: 3.88mu/L (0.40 - 5.00)

06/09/2012 Serum cholesterol/HDL ratio = 5..1

06/09/2012 Serum LDL cholesterol level = 5 mmol/L High

06/09/2012 Serum HDL cholesterol level = 1.4 mmol/L

06/09/2012 Serum triglycerides = 1.5 mmol/L

06/09/2012 Serum total cholesterol level = 7.1 mmol/L High

06/09/2012 Serum albumin = 41 g/L

06/09/2012 Serum alkaline phosphatase = 50 U/L Original Result: 50u/L (30 - 150)



06/09/2012 Serum alanine aminotransferase level = 11 U/L Original Result: l l u /L

(10 - 35)

06/09/2012 Serum total bilirubin level = 8 umol/L

06/09/2012 Serum urea level = 4.7 mmol/L

06/09/2012 Serum creatinine = 70 umol/L



06/09/2012 Serum potassium = 5.1 mmol/L

06/09/2012 Serum sodium = 138 mmol/L

06/09/2012 Percentage basophils = 2%

06/09/2012 Basophil count = 0.1 10*9/L

06/09/2012 Percentage eosinophils = 6 %

06/09/2012 Eosinophil count = 0.3 10*9/L

06/09/2012 Percentage monocytes = 5 %

06/09/2012 Monocyte count = 0.3 10*9/L

06/09/2012 Percentage lymphocytes = 47 % High

06/09/2012 Lymphocyte count = 2.4 10*9/L

06/09/2012 Percentage neutrophils = 41 % L

06/09/2012 Neutrophil count = 2.1 10*9/L

06/09/2012 Red blood cell distribution width = 12.5 %

06/09/2012 Mean corpusc. Hb. cone. (MCHC) = 32.4 g/dL

06/09/2012 Mean corpusc. haemoglobin(MCH) = 31.7 pg

06/09/2012 Mean corpuscular volume (MCV) = 98 fL

06/09/2012 Haematocrit = 0.393

06/09/2012 Red blood cell (RBC) count = 4.02 10*12/L

06/09/2012 Platelet count = 266 10*9/L

06/09/2012 Total white cell count = 5.1 10*9/L

06/09/2012 Haemoglobin estimation = 12.8 g/dL

 

[richvank]

Hi, maryb.

It would be helpful to have the reference ranges for the lab that ran these tests. Reference ranges vary somewhat from lab to lab for some of the parameters.

Best regards,

Rich

 

[rlc]

Hi maryb, Have you been taking B12? If not high B12 can point to other diseases.

One thing that stands out in your results is your TSH level; it indicates that you possibly have hypothyroidism. The reference range for TSH that your lab is using (0.40 - 5.00) has been proven to be wrong yet the majority of labs are still using this range. It is now believed that TSH above 2.5 indicates Hypothyroidism. This article by Dr Mirza http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid explains this and what level of treatment should be used to achieve the right TSH level, most doctors use to much medication making the patient worse. More about the wrong reference ranges for TSH can be found here http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

Low MCHC can be caused by the diseases listed here http://en.diagnosispro.com/differential_diagnosis-for/mchc-lab-decreased/10373-153.html Have you been tested for celiac (gluten enteropathy) ? Because it is on this list and mimics CFS symptoms.

I don’t know if you have been tested for other things but there is a lot that should have been done that is not on the list of tests that you have had done, such as ANA, morning Cortisol, Transferrin saturation, Vitamin D, T4, OGTT.

Your Ferritin is on the low end of the range so it would be a good idea to get the full iron studies tests done to see what your other iron levels such as serum iron and transferrin saturation are.

Your Glucose level at 4.9 indicates that it would be a good idea to do the OGTT tests to check for pre diabetes as the glucose tests is not very accurate and can miss this.

On these links are articles by Doctor Mirza that explain the things that should be tested for that most doctors don’t and problems with wrong reference ranges if there are any tests that haven’t been done get your doctor to do them and make sure that the right reference ranges are used see http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome and http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

Hope this helps

All the best

 

[caledonia]

Fluid retention can be a sign of high blood pressure/heart disease. I'm assuming your blood pressure tested ok, otherwise wouldn't your doc have said something? In either case, the treatment is a diuretic. If you do end up taking a diuretic, be aware that it depletes magnesium and potassium, so you'll need to replace those. In the US, the only thing you can get by prescription is potassium. Not sure about the UK.

 

[taniaaust1]

Also before taking a diuretic.. probably good idea to try to rule out the things which may indicate low blood volume which can often happen in ME/CFS eg POTS. (with POTS there can be POOLING/SWELLING IN THE LEGS but it tends to happen with being upright (it could cause blood pooling/swelling in the legs even when sitting).

Do suspect POTS if you have OI as taking a diuretic with it could be very bad and would cause you more issues. Take care.

 

[maryb]

Thanks for replying I appreciate it.
Rich - this was exactly as I received it, not much help for many of the tests is it without the reference ranges?

Ric - I've suspected for some time I have hypothyroidism, I was prescribed thyroxine by a couple of docs (privately) but couldn't tolerate it - gave me terrible palpitations even on a low dose, I will look up that link thanks.

Caledonia - I have weirdly fluctuating blood pressure - sometimes very low and then goes high, the GP didn't take my BP or even look at my legs - basically not interested. I'll think about the Pot/Mag whilst on the diuretic thanks.

Tania - I always thought I didn't have POTS as I don't go dizzy on standing up and my BP doesn't fall, but the fluid is definitely in the legs so whether its blood or whatever I don't know. It really should be within the GP's remit to find the cause/root of this symptom but she was so happy she felt she didn't need to look further, would she been as happy if it had been her mother? Thats what I ask myself, I suspect the answer is no.

 

[Shell]

Mary, I too note the TSH level. Also your lymphocytes are high which indicates some sort of infection. Your cholestral is also high and as that's one of the band-wagon results I'm suprised you weren't badgered about it.
HB of 11 is a bit low if they are using the common ranges of healthy being 12 -15.

I don't always get dizzy with the POTs either. Not sure what my BP does (I have hypertension with bizaree fluctutions).

Your GP sounds utterly useless. Why are so many doctors like this?

btw my lovely puffy legs - the fluid builds up around my ankle and heal and I can feel it up the back of my legs. I get a tightness and some pain in my calf's when I'm upright too long.
Also do you have the POTs rash? It's like a measles rash only redder and you feet tend to look blue/white.

 

[taniaaust1]

Tania - I always thought I didn't have POTS as I don't go dizzy on standing up and my BP doesn't fall.

POTS diagnoses doesnt come from BP but only heart dysregulation. I dont know if POTS has to cause dizziness thou that is very common with it. I find my POTS sometimes just causes my brain to stop functioning so well when when Im upright. Some will get headaches or like a build up of pressure in head (must be the brain screaming "need more blood, need more blood" due to POTS when they are upright (it may not happen right away). But yeah if you have POTS you would be getting OI symptoms (not necessarily dizziness) when standing coming in at some point.

I have weirdly fluctuating blood pressure - sometimes very low and then goes high,

Orthostatic hypertension (and orthostatic hypotension) either can occur with POTS (note orthostatic hypertension also may occur with diabetes) and can also be due to low blood volume (Dr David Bell at times gives saline IVs to ones with ME/CFS who have orthostatic hypertension due to low blood volume).

I suggest to try to work out what triggers the shifts in yours, there is probably some kind of triggering for the way its swinging that you've missed. .. eg does standing affect it one way or both ways and affect it differently to laying? eg I have orthostatic hypertension and POTS when Im standing thou on rare occassions I get orthostatic hypotension (sudden ditch down but right back up) but have orthostatic hypotension when sleeping. All these issues with my BP fluctuating in my case seem to be due to low blood volume (hypovolemia).

I suggest if doctors are unwilling to send you for tilt table testing, to try doing a poor mans POTS test on yourself first thing in the morning (make sure another person is present in case you faint).. and at the same time.. look up to see if orthostatic hypo or orthostatic hypertension appears thou in my own case those usually take far more then a 10-12 min standing test to appear (any of these could be indicating low blood volume issues). http://en.wikipedia.org/wiki/Orthostatic_hypertension

another option you could try if you didnt want to risk diuretics with possibly having low blood volume with your ME (maybe too due to low blood volume issues already being so common in ME, maybe taking a duietic could make getting that issue even more likely even if you didnt have the issue now? Another option would be compression garments- socks or thigh highs eg just one example but many more at that site and it tells what medical issues they are suitable for .. following is suitable for Moderate swelling, Relief from moderate edema"http://www.compressionstockings.com...e-calf-high-compression-stockings-p-1832.html (If you found that something like that had the affect of something like less headaches, less brainfog etc .. it would prove you have low blood volume issues going on).

 

[maryb]

Thanks Tania I'll look into it a bit more, I have been adding a lot of salt to my diet for some time and began to wonder if that was causing my leg problem, honestly we really shouldn't have to do this ourselves, when you think what the average salary of a GPs is now - beggars belief...............
Its like fighting in the dark
I wondered right from the start of my illness if I had vasculitis - the veins in my arms in particular became very sore to touch and slightly swollen, just another symptom that no-one was interested in - I'm sure someone out there will put it all together one day.

 

[taniaaust1]

Thanks Tania I'll look into it a bit more, I have been adding a lot of salt to my diet for some time and began to wonder if that was causing my leg problem, honestly we really shouldn't have to do this ourselves, when you think what the average salary of a GPs is now - beggars belief...............
Its like fighting in the dark
I wondered right from the start of my illness if I had vasculitis - the veins in my arms in particular became very sore to touch and slightly swollen, just another symptom that no-one was interested in - I'm sure someone out there will put it all together one day.

You could always stop all the extra salt you have for a couple of months and see.. probably a good thing to try just in case and then you will know either way (and if you get worst symptoms on stopping the salt, you'll know it was actually doing something after all). Trial and error, trial and error.. Yeah I hate too how we all are left to work out things ourselves and have to always do our own detective work while having brain fog, to solve our issues. The most important rule I try to follow when working things out, is "to do least harm"

May your current puzzle be worked out soon.

 

[maryb]

Yes thanks - I have cut down on the salt but its difficult because I don't have any processed food so any salt I have has to be added, I don't have pickled or cured stuff either, I know we need a little salt, but how little?
I do think the thyroid is an issue for me so I'll try and work through what I can do to investigate further.

 

[Seven7]

Are you sure it is not Blood pooling? There is a video managing Orthostatic intolerance on youtube that shows you how to test the legs for blood pooling. I thought mine was swollen too but I have OI. If I would have decreased water, I would have made me worse. I am doing compression garments and florinef and the pooling is better. Just a thought.

 

[maryb]

Well I tried the lying down for 10mins, jumped up towards the end briefly but laid back for the last couple of minutes BP at the end of time was 94/58
After standing up still for 3/4 minutes it was 127/74 so on that reading not OI
But I will repeat it as I was disturbed, aim to do it properly or not at all

 

[rlc]

Hi maryb, do you know what level of thyroid medication you were put on? Palpitations is a sign that the level of medication you were on was to low see http://www.ehow.com/facts_4809682_side-effects-thyroid-medication.html Dr Mirza recommends this equation for treating Hypothyroidism

In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH by 2 digits. This simple math will allow you to have a rough estimate of levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.

If you achieve a TSH of 1-1.5 and your patient is still symptomatic, do not waste your time on thyroid and look for other reasons for the patient's symptoms.

http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid

So if your TSH level is 3.88, 12.5 mcg of levothyroxine would lower your TSH level to 1.88 and you would need a tiny bit more than that to reach the goal of TSH between 1-1.5 mU/L

It might be well worth double checking what dose you were on, doctors often give the wrong amount of meds make the patient feel worse and then decide that the patient doesn’t have a thyroid problem.

You should also get them to test T3, T4 and thyroid antibodies.

The edema you are experiancing can also be caused by Hypothyroidism.

Hope this helps

All the best

 

[taniaaust1]

Well I tried the lying down for 10mins, jumped up towards the end briefly but laid back for the last couple of minutes BP at the end of time was 94/58
After standing up still for 3/4 minutes it was 127/74 so on that reading not OI
But I will repeat it as I was disturbed, aim to do it properly or not at all

If it was 94/58 when laying but then jumped up to 127/74 when standing... That sounds like it is showing up an issue.... 94 to 127 is a systolic increase of 33 just from standing, your body should not do that.

Orthostatic systolic hypertension (which can be a type of dysautonomia in some as its shows issues with bodies regulation) is defined by an increase of 20mmHg or more due to standing. http://en.wikipedia.org/wiki/Orthostatic_hypertension .

Sounds like instead of your body going into POTS in which the heart speeds up while desperately trying to maintain homostatis.. instead your BP is increasing to try to keep things okay (to keep getting blood to your brain etc.). This is probably happening by your body on standing producing abnormally amounts of adrenaline/nor adrenaline causing that raise to occur (if that didnt happen you'd probably otherwise have POTS instead happening to help get blood to brain on orthostatic shift, in my own case I get both of those things).

Anyway.. that's autonomic malfuction. Large population study showed that orthostatic Hypertension occurs at around 1% of people in the general population but it seems far more common in ME/CFS (thou no study has been done on it in us). Orthostatic hypertension is sometimes helped in us by treating low blood volume is that is the cause (lots of fluids, salt etc).. so this problem is contradicting taking duretics unless you know more why you have it and know its not being caused by hypovolemia (low blood volume). If you have this happening, taking duretics and making hypovolemia worst, your body will try to do more to compensate and it may cause far worst issues.

Take care, its a pity you cant get a proper tilt table test done by someone aware of all these different issues in ME/CFS. Finding a doctor familiar with orthostatic hypertension, is unfortunately even harder then finding a doctor who is POTS aware..

best luck

ps with that kind of dysregulation, be aware your BP may actually be spiking up very high on occassions when you are up on your feet so familarise yourself with symptoms of high BP to alert yourself if it could be giving you symptoms at times (in my own cause high BP can cause me to break out in sweat and feel very hot but my body dont do that till mine hits 170).. The higher the BP, the higher it can fall from too if one has anything like NMH too.

It would be very hard to know just how high your BP could be going from a 10min test.. I didnt realise I had my issue till I had some 24 hr BP and heart rate monitoring done which then was showing BP going up to 170/138 at times .. only occassionally do I notice it up on a 10 min standing test). You have dysfunction there.. the quesiton now would be ..how bad is your dysfunction, if it is going up very high unknown to you at times.. there are increased risks. Anyway.. check out the wiki link I posted and the study references on that to familiarise yourself with the condition before you try to see a doctor about it. (note..it may not be occurring all the time either).

 

[maryb]

Shell - yes why are they so useless? why isn't she interested in further investigations? instead of just asking me to take the diuretics?

Tania to be honest I struggle to get my head around this OI etc - I did the test again
resting 104/59 (72 pulse)
upright 116/74 (79)
I don't think my BP spikes are as high as yours but it does get to 138/140 at times, I try to take it regularly to keep a check, which is more than the GP does. She hasn't really looked me - if you know what I mean, at my face, my legs asked any questions about my health..........I'm still undecided about what to do with the diuretics.

Ric - I can't remember the dose off the top of my head - Ill try and find the letter - it was a few years ago, interesting you get the symptoms like the palpitations with too low a dose, I assumed it would be the opposite, thanks for the info

 

[Seven7]

maryb, I was told to take my BP and Pulse every morning and I write down. When I crash I have to take my BP (Sometimes this is hard while I feel so terrible). My BP is high in the 130s/90s and HR while I am on a crash. So you have to take it during crash so u understand what happens to you during one.
Observation: Your first reading has low BP, then U had OI positive. Second reading BP was better no OI. I see the same for me, on days when I wake up with top BP under 100 I have to load on salt and electrolytes or I will have horrible day with OI. when top BP >100 I keep what I did as measurement day before.

 

[SOC]

Tania to be honest I struggle to get my head around this OI etc - I did the test again
resting 104/59 (72 pulse)
upright 116/74 (79)
I don't think my BP spikes are as high as yours but it does get to 138/140 at times, I try to take it regularly to keep a check, which is more than the GP does. She hasn't really looked me - if you know what I mean, at my face, my legs asked any questions about my health..........I'm still undecided about what to do with the diuretics.

maryb -- You might want to try Dr Bell's Simple Test for OI http://phoenixrising.me/treating-cf...hostatic-intolerance-chronic-fatigue-syndrome
Some PWME have OI that doesn't show up clearly on the 10 min test, but becomes obvious on the longer test. It looks like you might be one of them.

I thought I had no OI for years because I didn't have dizziness or extreme changes in BP within 10 mins of standing, but electrolyte and fluid loading early in the day make a noticeable difference in my functionality. I suspect low blood volume is the culprit.

 

[maryb]

Thanks SOC I will try that test, its a long one though
I'll do it before I chance the diuretics.

 

[SOC]

Thanks SOC I will try that test, its a long one though
I'll do it before I chance the diuretics.

Yeah, it's long and -- for me -- miserable. I didn't faint or get dizzy, but was extremely shaky, felt crappy and my legs got really, really, painfully tight, no matter how much I tried to relax them. My guess is that my body was tightening the leg muscles to try to push the blood back up to my brain. My BP and HR climbed continuously the whole time.

It didn't hurt that hubby, who was helping me during the test, saw what happened when I stood upright for a while. Not that he isn't very supportive, but each bit of new awareness improves how we work together handling this darned disease.