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My Diagnosis diary

I thought I would keep a bit of a diary on here so I can keep a track of my symptoms and where I am at, as I have the feeling that this won't be a short journey. Any encouragement is appreciated as I have trouble standing up for myself, and have low self esteem.

So here goes...

22nd June - Have made appointment to see the nicest nurse at the GP's office. - Worth waiting to see the nice one - well, least grumpy one:)
Feeling yuck and think I need to check iron etc as am feeling tired, achy, restless legs, migraines, and...weird - a bit jumpy and...pins and needles / buzzy sensation in muscles. Grumpy too - though I know that the grumpyness and some of the aches and prob migranes are part of the gluten challenge before the C and G n the 8th July. - have started spending a lot of time on the couch watching bad telly, and the weather is part of it, but I hink there is something else going on.
I didn't want to wait until the 8th July when I see the specialist as there may not be time as they rush me through the procedure, and I won't be feeling the best anyway(!) and will be meeting him for the first time so will be nervous too.

Kind of second guessing myself about getting these test done, but they don't cost me much, they won't prevent anyone else from getting care, and if ll fine, they will show the gluten is to blame.


23rd - made list of what I want checked...
Iron, B12, Vit D, Magnesium, CRP, liver enzymes.

The is a lot more that would be nice - but I will have to use my best negotiating tactics to get this as it is.

24th - Tried a class at the local gym this morning - underestimated it!!! - Did not think mums and bub class would be that intense (actually was not intense - just shows how unwell my body is!)
Went to appointment and got bloodtest - forgot list and forgot to get prescription too - poo!

She was a bit vague about which tests she was going to do, but I said there was not point in doing thyroid as they always do that and it is always fine.
Think she is doing HbA1c and blood sugar :( - don't want to know!!! ( NB I don't have diabetes, but had gestational diabetes and had hot it right down, but then have been really bad lately - there is a cholocate promotion on at the mo, among other things!)

Anyway, she said she would watch out for results and phone / email depending if something else needs to happen.

I will see her next week anyway for Miss P, so can chase up then if needed.

25th - Having trouble walking - really sore legs - Damn Gym!
Posted forms for C & G - horrific weather, even our street flooded!

Chiropractor tomorrow.
 
You rock! A diary is a good idea. I think we get so used to the symptoms they become normal to us and we under report them.
 
Well it has been one of those days.
I am really grumpy - assume due to the gluten.:(

I ended up phoning to chase up blood test results, and the nurse did phone back which was nice. Though she had emailed me the results on wednesday - and it went into my Spam folder...GRRRR
She said every thing was fine...
So here are the results:

Vitamin B12: 248 pmol/L RR: 130-650 pmol/L
HbA1c: 32 mmol/mol RR: 20-40 mmol/mol
Sodium: 137 mmol/L RR: 135-145 mmol/L
Potassium: 3.4 mmol/L RR: 3.5-5.2 mmol/L
Chloride: 101 mmol/L RR: 95-110 mmol/L
Creatinine: 60 umol/L RR: 45-90 umol/L
Est GFR: 118 mL/min/1.73m2 RR: 80-120

Glucose (fasting): U/L 5.7 mmol/L RR: 3.5-6.0

Protein: 73 g/L RR: 64-83 g/L
Albumin: 44 g/L RR: 35-50 g/L
Bilirubin: 6 umol/L RR: 2-20 umol/L
Alkaline Phosphatase: 88 U/L RR: 30-150

GGT: 26 U/L RR: 10-35 U/L
AST: 19 U/L RR: 10-50 U/L
ALT: 24 U/L RR: 0-30 U/L
CRP: 4 mg/L RR: <5 mg/L

Ferritin: 37 ug/L RR: 20-200 ug/L

Haemoglobin: 129 g/L RR: 115-155 g/L
Haematocrit: 0.38 RR: 0.35-0.46 Ratio
Ratio MCV: 87 fL RR: 80-99 fL
MCH: 29 pg RR: 27-33 pg
Platelets: 245 x10(9)/L RR: 150-400
WBC: 6.7 x10(9)/L RR: 4.0-11.0 x10(9)/L
Neutrophils: 4.4 x10(9)/L RR: 1.9-7.5

Lymphocytes: 1.9 x10(9)/L RR: 1.0-4.0
Monocytes: 0.34 x10(9)/L RR: 0.2-1.0
Eosinophils: 0.07 x10(9)/L RR: 0.0-0.5
Basosphils: 0.07 x10(9)/L RR: 0.0-0.2

She did test a heap of things which was good, but she missed testing for Vit D and Magnesium, which I really wanted done :(I also note that the potassium is lowish. Which is interesting as I have not had bad D lately due to being on the doxycycline - wonder how long it has been this low?

The Liver enzymes are lower than they have been which is good - have a history of them being slightly elevated. And also my HbA1c is dropping too - even though I have not been particularly good with the sugar situation...
Maybe my fatty liver is de-fatting?

On the exercise front, I did manage to get to the gym for 1/2 an hour before the creche closed. My legs are still sore from tuesday!! But managed a bit on the bike and cross trainer. Although tues was a shock - it was good. I think I will try to keep it up, but maybe tone it back a little to start with so I can continue to function!

Have eaten heaps of junk this evening too:(

Thankfully a friend and her daughter came around this afternoon, which made it much more manageable.

So in conclusion, not really any further ahead. Really grumpy. Still have not done any study, or any packing to travel to appointment. Or any cleaning. Have eaten rubbish. Child teething and grumpy too.

Terrified that will go to all the trouble of colonoscopy / prep / travel / childcare / packing etc and that Doxycycline will be masking something.

Or that someone mentions IBS (again)!!!

Though I have decided that if they say they can't find anything, I will come home, continue antibiotics till my assignment is finished in October and my parents are back from their trip. Visit parents, stop doxycycline, and wait for all H**l to break loose and then be taken to A&E for them to sort it out.

I am a bit sick of trying to be proactive - it sucks. Better stop this vent now as I will carry on too much with the gluten grumps!

Oh and don't feel you have to go through all my test results, I just though if I put them on here I would not lose them!

:voodoo: (I am very grumpy)!!!

PS on a positive note - only 1 week ish left on Gluten and till colonoscopy and Gastroscopy. - and then I can stop freaking out and being grumpy!
 

DJW

Forum Monitor
Hi gotumtum. I thing your diary idea is fantastic.
Sorry the last batch of test didn't bring you closer to diagnosis.
Have you had a fecal calprotectin (sp?) done?

Sending you my support. Press on. You're doing the right thing.
 
Hi DJW

Thanks for your support.
I have had a fecal calprotectin done, and it came back negative, although Occult blood came back positive.
Am waiting on colonoscopy and gastroscopy 8th July.
Am a bit weirded out as have not even seen the specialist yet as he said to go straight to the scope after looking at my referral from GP.

I got these tests done as I wanted to try and figure out why I have been feeling worse in the last few weeks, and to take these results to specialist, rather than waiting on more results after seeing him. - If that makes sense?

Thankyou again so much for your encouragement. Hopefully tomorrow will be a better day. Sigh.
 
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