Timeline & History

[Super_sally888]

Here's the REVISED timeline/summary I prepared for the neurologist on Thursday.  I guess this indicates that something autoimmune is going on, at least.  Too much info?  Sorry this is long...

Sally Clark – Summary at July 2007, 37 YO Caucasian Female, DOB 4 Sept 1970.

Bloodtest Results - 2007

Date Test Result Range
22 Jan 07 FT3 2.03 2.8-7.1 pmol/L
        FT4 10.58 12-22 pmol/L
       TSH 0.573 0.27-4.2 mIU/L
(Following this result increased t4 by 50 mcg/day).

12 Feb 07 Total Protein 73 66 – 87 g/L
Albumin 45.8 34-48 g/L
Globulin 27.2 32-39 g/L
Creatinine (F) 75.52 45-84 umol/L
SGOT (F) 29.6 up to 32 U/L
SGPT (F) 27.5 up to 31 U/L
Prolactin 436.2 102 – 496 uIU/ml
Potassium 4.4 3.5-5.0 mmol/L

7 April 07 FT3 5.01 2.8-7.1 pmol/L
FT4 13.81 12-22 pmol/L
TSH 0.039 0.27-4.2 mIU/L

11 June 07 OGTT FBS 5 3.89-6.38mmol/L
OGTT 1st Hr 5.1 < 9.2
OGTT 2nd HR 4.5 < 7.7
OGTT 3rd Hr 4.1 1.68 mmol/L
LDL 1.70 1.56-4.55 mmol/L
VLDL 0.35 0.25-0.79 mmol/L

                FT3 4.49 2.8-7.1 pmol/L
FT4 16.58 12-22 pmol/L
TSH 0.023 0.27-4.2 mIU/L

Prolactin (F) 579 102-496 uIU/ml
                LH (luteal) 8.75 1 – 11.4
FSH (luteal) 3.95 1.7 – 7.70
Estradiol (luteal) 67.01 43.8-211 pg/mL

8am Cortisol 278.3 171 – 536 nmol/L

15 June 07 Vitamin D 220 47 – 144 nmol/L
iPTH 56.3 12 – 72 pg/mL
Antithyroglobulin ab < 20 (negative)< 40 IU/ml
Antimicrosomal antibody Negative
Anti-TPO Antibody 26.9 (negative)<35 IU/ml

6 July 07 Serum Ferritin 13.02 6-81 ng/ml
6 July 07 Serum Transferin 234 212-360 mg/dl
Serum Vit B12 312 223-1132 pg/mL

Other Diagnostics 2007
- Chest X-ray clear
- Testing for & diagnosis of asthma
- Repeat MRI: showed Microadenoma, white spots.

Current Medications at July 2007
1. Dessicated thyroid 125 mcg + Thyroxine 100 mcg (adjusted 23-7-07)
2. Parlodel ½ tablet / day (at bed time) (started July 07)
          (Nausea ongoing & bothersome side effect).
3. Vitamin B12 oral (500 mcg x 3/day) (started July 07)
4. Antihistamine (celestamine), 1 tab 2pd, and as required to manage symptoms (dosing changed from as required (Jan 07) to 2/day in July 07).
5. Symbicort – 2 dose/day (since Jan 07)
6. Ventolin – as required & before training session (since Jan 07)

Medical Timeline
1992 Consult with rheumatologist for back and joint pain (wrist / hips).  
No specific findings.  No treatment.  Suggested it was psychosomatic.

1995     Lived and studied in China.

End 1995 Moved to Hong Kong to start work with environmental company.

1996 Shingles attack, treated with antiviral meds.

1997 Moved from Hong Kong to Philippines (for work).  

1998 ER visit for kidney stones.  Pain killers given. Resolved without treatment.

1999 Consult Gastroenterologist for reflux, hyperacidity, abdominal discomfort.
Diagnosis Gastritis.  Use PPIs, antacids, Motilium.  Symptoms continued.

1998-1999 Rapid weight gain despite diet and regular exercise (tennis, gym).  
Progressive fatigue, depression, exercise intolerance.  Disrupted menstruation.

Mid 2000 Weight up to 210+ lbs. Severe symptoms.  Finally diagnosed hypothryoid, polycystic ovarian syndrome, IBS. Treatment levothyroxine, continued PPIs, Diane 35, metformin. (stopped Diane 35, Metformin, PPIs after about 1 year).
Parathyroid problems with elevated iPTH, low calcium? Treated with calcitriol (calcium and iPTH levels returned to normal after about 2 years and discontinued calcitriol).

Gastric symptoms continued – but improved with thyroid treatment.  Continued with diet and exercise.  Weight loss progressed.

Mid 2004 Commenced triathlon activities.  Weight about 165 lbs.
Continuing stomach problems.  Chronic D-C.  Nicknamed “El Cubetta” – “the toilet” by triathlon team mates.
Muscle cramping on-going problem –particularly in swimming.  Improves a little with continued conditioning.
Thyroid med dose adjusted up.

Sept 2004 MRI subsequent to continuing long-term galactorea. Pituitary microadenoma noted. Started on parlodel. Discontinued due to side effects (after about 6 months).

Mid 2006 Father in Australia died from skin cancer (after 6 year battle)…
Started desiccated thyroid (about July 06) – assist with symptoms particularly mood and energy.

End 2006. Training for Iron-Man.  Tummy problems dramatically worse – daily chronic D, bloating, reflux, belching, pain (affects training).
Chronic itching.
Chronic non-productive cough.
Dec. Consult Gastro – Endo/Colonoscopy carried out.  Diagnose IBD from colonoscopy biopsy, no endoscopy biopsy carried out.  Pt. declined medication.  Decided to trial gluten free diet (based on family history).  Near complete resolution of gastric symptoms with diet change and strict adherence to GF diet.  Symptoms recur if gluten is eaten.
4th qtr - first notice visual symptoms: flashes of light, movement in peripheral vision.  Intermittent only.  Occasional base of skull headaches.

Early 2007 Consult allergy asthma dr. (Dr. De Vera) Asthma diagnosed. Started steroid inhaler & ventolin as required.
Itching continues – low back, trunk, face.
Skin allergy testing +ve for rice, chicken, mango, tilapia, fish paste, dust mites.  Systemic response to allergy testing & was treated with oral steroids.  Prescribed daily antihistamine.
Have not done strict elimination diet yet, but initial testing seems to have fluctuating & non-predictable allergy response (ie. Itchy one day from eating something, no response the next day).….

Feb 2007 Completed first Ironman Triathlon in 16:45.  Good experience. Want to do it again.

June 2007 Repeat MRI: Microadenoma, white spots.

Mid 2007 Weight about 150 lbs.
Visual symptoms become much daily event.  
Strange sensations: occasional feeling that face is numb (in places), prickling sensations (over head), burning sensations in legs.  Base of skull headaches more frequent.  More tired than usual / concentration poorer.  Delayed training recovery compared to teammates.  Often catch feet when walking (shoes?? Lazy?? – Don’t usually wear heels)… am famous for bumping into things / dropping things / being clumsy… disassociated from body feelings…
Hot flushes.
Itching symptoms (not daily).
Muscle cramping much worse during swimming / after training / even at rest.

Doctors: Endocrinologist: Dr. Mike Villar
Asthma Dr.: Dr. De Vera

[Super_sally888]

Thanks Quix and Momzilla,

I don't know what they think....  possibly they don't know what to think.... will wait for the results of testing for carcinoid syndrome.

Just saw my friend who's an MD and accupuncturist.  He thinks I am just using the health stuff as an excuse..... and I've already used it too much...  and I should just do whatever I feel like doing as far as exercise / training and stop dwelling on it all.  Mind you he doesn't know details of the test results & hasn't asked me about symptoms & I couldn't be bothered telling him...  I think best thing is to just follow up the medical stuff but don't say anything to anyone about it unless there is something concrete and indisputable.... and just get on with my life as best as possible.

I am trying to find out if there is any way that that enzyme can be high & rising and there not be a problem....  Am wondering if it could be related to IBD / allergies (apparently this enzyme can be high in traumatic abdominal & GI injury.....)

Apparently it can also be high in hypothyroid.  My thyroid replacement dose is too low at the moment (they cut out the dessicated thyroid and only left the T4, without raising it)..... maybe.... will ask dr. about that....  though these would be weird symptoms for hypothyroid..  and the dose has been cut for too short a time to make such a difference (half life of T4 is weeks).

Exercise wise - at least I can be reassured that my heart is ok!!!!  The rest should be self-limiting.  Unless I hear otherwise from my Dr. Mike I will go do a run tonight on the track oval with my favorite running music, and go bike riding tomorrow. But I will take it easy and enjoy it!  The key to this should be listening to my body.  I train with a heart rate monitor so will detect if anything funny is going on....

Weather here is hot and very humid.  But we get storms nearly every afternoon, which cools things down.  Then the evenings are a bit cooler.  Never gets below about 20 in Manila, and certainly not at this time of year when late 20s and low to mid 30s are the rule (we work in Degree C here).  Nicest time of the year here is Christmas time when temp are low to mid 20's (at night) and high to low 30's during the day and it hardly rains.

Am at work (we work on Saturdays) and have got to get caught up on stuff....  Boss wants a trip to Malaysia next week for a few days and I will go unless Dr. says otherwise (I texted him both about exercise and travel)....

Talking of dogs; I have two.  A mini maltese called Peabo and a Long haired bouncy chihuahua x ???.  They are small and both are white. They hate my two cats: Daisy and Greta.  My sister calls the dogs 'The White Rats'.   Talking of Rats - has anyone seen Ratatouille?  I think I should go see it tonight.

Enough rambling... thanks for your sympathy, support, and ears.....

Anyone have anything good happening this weekend?

Take care all.

Sally

[Quixotic1]

That was NOT the news you were hoping for.  Does anyone think this is a primary muscle disorder?  Is it really okay to continue to do vigorous exercise?  I wish you and all the others were out of limboland - it's getting crowded here.  We're thinking about you a lot.  What's the weather like in the Phillipines?  Hot and humid or is this the better season?  Talk nonsense to us and maybe we can get your mind elsewhere.

You know why a dog has fleas?

To keep his mind off the fact that he's a dog!

Love ya lots, Quix

[Momzilla]

Hi, Sally~

I know that feeling.  It's scary.  I went to the doctor's as you may know, and it was a great experience.  He was unbelievably attentive and thorough.  But I thought for sure he'd take one look at my gait and listen to my symptoms and say, "You have MS.  Here are your prescriptions.  Call me if you have any problems."  He did not.  He does NOT think I have MS.  We still have to figure it out.  I'm scared about what it may be.  (I still think he needs to revisit the MS possibility)  And I feel like time keeps slipping away.

I hope things calm down for you.  Limbo's no fun.  Especially when you're not feeling well.  You keep having to go through so much.  Hang in there.  Feel better!

Chris*

[Super_sally888]

Hi All,

Still here in limbo land.

Got the results back from the repeat CK-MB.  Used a different lab.  Seems the numbers are rising.  First on 23/7 was 3.2 x max level (this was the alarm admission suspecting heart attach), 2nd test last Friday 27/7 was about 3.4 x max level, now (1 week later 3/8)  is 3.66 x max level.  Tremor is still here.  This is not an intention tremor.  Is there at rest.  Seems worse in mornings, a little better as the day wears on.  Patchy burning on legs, arms, back continues.  Flushing also from time to time.  Gonna text my dr. the latest results shortly...  

Muscles feel kinda weak  - like I worked them really hard (although I haven't - have had a really easy week.  Only 2 short easy swims and a short bike and short run).  By now I don't know what is just my overfeeling normal sensations due to all this attention on my health, and what is a symptom.

I was so hoping this last test result at a different lab wouldn't show anything or at least show reducing levels ............ I am so "don't know what to do".....

In meantime I am somehow trying to work and stay a little active and not worry myself too much ......  It's just that not knowing what is wrong means I have no idea of what to expect....

Sally

[Nanners123]

Wow!!! I am exhausted just reading all you have gone through. I am encouraged by your positive attitude and in awe of your energy despite all the symptoms. You are inspiring me to stay strong.

I am at the point of thinking all of these symptoms I am having are in my head and continuing because I am journaling every day what is going on with me in hopes that my neuro at my next appointment can get a better picture. I wonder if I just stop and focus on my life more if the symptoms will fade off into the background.

Anyway, I am glad that you are receiving such comprhensive care from who seem to be very professional docs.

To everone else, just to let you know that I do read forum and though I have not replied in a while to anyone I do keep you all in my prayers.

[Super_sally888]

Sorry am posting here so much recently.... am kind of on a steep slippery slope at the moment and grasping at anything info / proof that will slow down the slide...

Visual stuff.  Was comparing eyes.... seems my left eye has blurry vision. The blurriness comes and goes.   Will try changing my contacts tonight and see..... can't find my glasses recently so can't check against them....

Maybe this is just a somatization response from reading the VEP, but in case I will just pass by the opthamology centre near my office tomorrow morning and ask them to check that things really are ok.  The flashing is ongoing, and vision just a bit weird....  The idea of my vision being impaired scares me very much.... that would really put a damper on a lot of things, and independence...

The burning sensation still here - but back of arm, shoulder, lower legs..... is it really possible for this to seemingly switch around?  To have symptoms when stuff doesn't show on the neuro testing...

I am so distracted at the moment with all this, I am having trouble concentrating on work!!! Somehow have to get a hold on myself and remember that life and its requirements go on regardless of what flashing or burning or other weird sensations I am getting... and I am the only one paying my bills, so I'd better keep on top of it.

S