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

[grannyhotwheels]

Hi Sally,

I just wanted to let you know that you are in my prayers and my thoughts.  I know it's quite a battle but hang in there and try to be strong.  You are going through a very hard time right now  and I think your are handeling it very courageously.

Best wishes,

Carol  (OK)

[Super_sally888]

Hi Guys.  

Just back from Drs. Not feeling physically better, but pshycologically better.  I have got two great drs on my team.  They both admit they don't know what's going on, but that something is and they want to get to the bottom of it. They see it as a challenge.

I saw them individually, then they consulted by phone, in my presence, discussing possibilities...

They have ordered repeat CK-MB, MM, & total, Tests for Carcinoid (24-hr urine 5-HIAA & serotonin), and EBV, IgM, IgG.  

Once we have results they will discuss next step.

I am not to do high intensity training, but otherwise may train depending on how I feel, but for now no outdoor training in potentially hazardous situations (like highways), or without a companion who knows my history and has contact details of my doctors.

Didn't realise they don't allow personal contact details on here.... hmmmmm.... should have read the forum rules better....

Take care all.

Sally

[Super_sally888]

Hi Quix.  

Remember I said I am not sensitive.  Everything you say is fine. I am so grateful to have some people here who I can actually talk to.   I texted both my doctors this morning.  Both want to see me today! Will be heading out from the office in a few minutes (the driver will take me).

I am currently on prednisone (supposed to be 3 days only) 40 mg.  That is why I didn't go straight to the ER last night.  Logically, I thought it should ok...

Actually the burning feels like a neuraligic type thing. It was moving around and waxing and waning, but is pretty constant now, as is the tremor.  When it's really intense, I can hardly feel my feet.  The flushing comes and goes.  I put an icepack on my back.  It helps.  The visual stuff is playing up.  I have 'cameras' going off intermittently in my peripheral vision.

They are thinking thyroid myopathy as an option.....  ANA was negative.  I don't know what else they'd look at.  No time to research now.  I have been doing payroll and talking to my key employees in case I am confined again....  I advised my big boss by mail that we have a 'don't know situation' and we should decide on strategy depending on what happens.  He is also a long term and very good friend, but doesn't understand medical stuff at all.  I am waiting for his call.....

Other than the flushing and heat which I also get with my most recent allergic experiences.    The are also thinking of carcinoid syndrome....

I don't know if they will admit me again.... am prepared.

I hope I can laugh about this in a few months and say "What a drama Queen".  All this has got so bad so quickly!  

In the meantime I had better get all my affairs in order for whatever is coming.....

Will keep you guys informed. If ever you can't get hold of me and need an update, my secretary can advise you on ***@****.  Hope it won't come to that.....

Sally

[Quixotic1]

I agree about the "athletes and MB" and nt to this extent.  I guess I was just telling you how little I actually found.  There is a hypothyroid myopathy, which also will show an elevated MB fraction.

And I also agree that one doesn't "write off as normal" when you have so many other symptoms happening.  I hope I didn't sound like it was all explanable.  I merely meant to bring up instances where the MB fraction can be elevated outside cardiac damage.  I did research it using enduranace athlete and athlete to get what I found.  All of it said that endurance athletes have a whole other physicology.

Were last night's symptoms suggestive of too much thyroid?  Or did it feel like more of the allergic reaction.  Are your eyes puffy or do your hands feel swollen and stiff?   You might need a short burst of steroids.  

The endo stuff just confounds the neuro stuff.  I'm out of my knowledge league. Did the doc's say anything about a diffuse "myopathy?"  (like the poymyositis) You might mention it to the endo tomorrow.  Do you also see a rheum?  I can't remember.

Don't be silly about the "support" thing.  In any group like ours we all rotate through bad stuff and lean on the others.  That's what support means.  We all need it and we give it when we can.  Just posting here with us shows others they're not alone and gives them a chance to put what they are going through into a group perspective.

I'm hoping this is all transitory.  I'm so sad life has risen up and slapped you in the face.  Thinking about you, Quix

[Super_sally888]

Thanks Quix.  Yes, I see what you mean about the lab stuff... the doctors still considered that it was a rising result.

The muscle thing and athletes - yes.  But not to this degree.  And not with the other symptoms going on.  I was thinking of researching that topic under "sports medicine" becuase endurance athletes don't behave like the general population.

Had a really bad night.  Feel like I am burning up, tremor, flushing....  Still burning and tremoring... my body feels like it has been rubbed in ground Chilli.

Texted my endo and allergy doctor already.  They both want to see me ASAP.  Will see allergy dr. today and endo tomorrow.  Allergy doctor wants to get carcinoid syndrome evaluated and (hopefully) eliminated.  More tests today.  Don't want that one!  She also wants the endo to look at possible thyroid or adrenal causes...

As far as training the coach has already told me he cannot continue to coach me under the current health circumstances...... I can act as his assistant, but may not train outdoors in any even possibly unsafe situation and without a companion who knows my history.... until and when things get sorted out.

Oh Geez.  I am so stressed out over this.  Sorry I am getting all the support and not giving any at the moment... hope I can reciproicate the support given here soon.... hope they find out what's wrong and how to treat it easily and I get my life back.....

Oh how quickly life can just disappear!!!!!!!  

[Quixotic1]

Hi, Sally,  I'm glad you're home, and sound a little better. Welcome again to diagnostic limbo.  I tried to do some reading last night on your questionabout persisitently elevated CK-MB.  I can't really do medical research because all of the good articles are in pricey subscription services.  This is what I gleaned.  The "gist" of it should be right.  My absolute facts may not be.

They've known for a long time that "marathoners" aka ultra athletes can have mammothly elevated MB fractions from a non-cardiac source, after their event.  Now, death from cardiac dsiease is wlso well known in this group, but what I was looking at excluded that group.  Now, here is what I "gleaned" is vague.  The abstracts seemed to say that in people with damage/regneration going on in their muscles, the percentage of MB fiber is in the muscles increases.

This group of people include endurance athletes, weight- training and such.  As muscle strength is built, I understand, small amounts of damage is done to the muscles,.  This damage is healed and the muscle rengenerates stronger, better and faster (sounds like the Bionic Man).  As it regenerates it produces more CK-MB in the muscles involved.  Sally, does this make sense?  Thus, in a situation of damage (exercise or disease) the circulationg CK will have significantly more CK-MB.

Now, for the down side.  It also appears that people with primary "muscle disease", be it a type of dystrophy or an autoimmune inflammation also have a damage/regeneration cycle going on, but the damage exceeds the regeneration.  These people will also have a high total CK and a high MB fraction in their blood.  I saw a reference (which, of course I couldn't access) indicating that the inflammatory disease with the highest non-cardia MB levels was an autoimmune disease called "polymyositis."  

Please take all of this with several liberal handfulls of salt.  I only repeated things that I saw reference to several times.  You may have a muscle biopsy in your future and certainly an intensive autoimmune workup.  I don't know if any of this fits into MS.  If the MB results from the exercise and the other symptoms added to the problem then it could.

About your results.  I don't understand your "range" in the CK total.  Would you look closely at what you wrote and see if it is wrong?  I don't see a real rise/fall in the numbers.  All the body's enzymes change from hour to hour and the two values for each the MM and NB fractions are essentially the same.  The MB is not necessarily rising, it may just be two values within the expected "lab error" range of the measurement.  However, with the two days of rest one would certianly expect the levels to be dropping.  That seemed concerning.  With this going on have your docs advised you to halt training, yes?

Boy!  I hope this helped.  Quix