New member - tanya - intro

[Guest guest]

In 1997 when I was 33 and perfectly healthy and only taking the pill.....hubby and I decided to have a baby so I got my gyn checkup for the ok and stopped the pill....I was a size 3 for my whole life and immediately started gaining wt.....told my Dr who took a push away from the table attitude....after 4 months I was surprised I wasn't pg and suspected with the unexplained wt gain something was wrong but she explained to me that they don't suspect infertility problems until 6-8 months go by.....I hounded her at 6 months and 100 lbs that something was wrong so she ran blood tests....the nurse called and told me "no wonder you're gaining weight, you're hypothyroid".....they started me on synthroid and I immediately lost 35 lbs then got pg......everything was normal except I developed back pain I suspected was due to the pg and weight gain and it was at a level I could tolerate with just occassional meds.....I delivered Nov 11, 1999 when I was 35. My next pregnancy I was sick from day one....you name it and I had it...from normal pg stuff to rare pg stuff.....that is when the "aches & pains" started.....I looked forward to delivery day because its like you are suddenly cured because all the pg stuff goes away.....but not long after I delivered they said my heart was racing....they did tests and found I had post partum thyrotoxicosis.....basically my normally stable hypothyroid was suddenly very hyperthyroid.....I didn't know then but that was the start of a downhill spiral that continues but at least seems to have leveled off but was raging for 3 yrs.....I delivered feb 19, 2003. I have had an unstable thyroid ever since. After getting home with the baby my mild back pain got worse causing me to definitely take notice and see the doc for pain meds - I think darvocet.....then I progressed to having trouble getting out of bed in the morning.....my back, hips and ankles hurt......thought I was getting arthritis but tested neg....started getting migrains and went to a neuro....EEG was abnormal and he R! An an an tibody test for my thyroid because it isn't normal to fluctuate between hypo/hyper....my levels were thru the roof so I was diagnosed with hashimoto thyroiditis......started having bad memory problems and thought at 40 I was getting alzheimers.....body pain got worse and my skin hurt like when you get the flu....my GP sent me to several pain clinics that wanted to do epidurals and I refused....I wanted to know what was wrong with me.....I finally went to one old pain doc that worked for hospice and he wasn't an anesthesiologist so he wasn't into injections.....he was the only one who listened while I described my pain.....he told me from my description I had classic fibromyalgia and asked if I've been tired and I told him I sleep 18 hrs a day and he told me chronic fatigue syndrome often goes with fibro. Finally, I had SOME answers. He put me on methadone 10 mg and percocet 10 mg for breakthrough pain and zanaflex muscle relaxer....that helped but I kept getting worse with stranger symptoms....I started dropping off to sleep regardless of what I was doing and thought I had narcolepsy but sleep study was neg and was told it was the CFS....when I dropped off to sleep like this I had myoclonal type seizure activity....I was practically bedbound between all the symptoms....when I was awake I was online searching for my problem.....I thought I was dying.....I found an article and group on hashimoto encephalopathy.....I'm convinced this is what I had/have.....there is 2 types....one with stroke type symptoms and paralysis and one without......mine was the type without.....I guess that's a good think except it might have gotten me diagnosed properly and treated.....as it was I was on my own with printed literature telling docs I thought I had this......found a neuro that put HE as a "working" diagnosis but agreed to try the treatment.....1st line was steroids.....I felt like crap so we tried 2nd line treatment.....in home IVIG......immune system drug.....it definitely helped but I was a 90 yr old in a 40 y! R old Bo dy convinced I wouldn't make 41.

Out of the 23 HE symptoms I had 19

This affected every body system.....my symptoms had symptoms......I won't list them all here but I had not had a period since my delivery in 2003 and started with menopause symptoms.....a strange thing happened this past Nov and its related somehow but I can't find the relation....I got sick as a god and had my gallbladder out.....I went in that hospital one way and came out another.....instead of hotflashes, I was cold.....I had a period DEC which was the 1st since getting pg.....I started losing weight.....I'm awake 18 hrs a day instead of sleeping.....my pain has decreased......although I think the FM and CFS are here to stay for some reason there has been an improvement with the removal of the gallbladder.

So I guess I'm saying to check your thyroid level and make them check the antibodies.....this CAN affect everything.

I hope you haven't lost your doctor.....what I went through is hard because they tend to want to send you to a specialist pertaining to the symptoms but what I found is the specialist said until they straightened my thyroid level out they couldn't/wouldn't do anything.....they kept passing the buck but what upset me was not one acknowledged the combination of my symptoms and related to how sick I actually felt and said "oh, its normal to be this sick with these symptoms and its related to your thyroid" .....its like they had never seen this before.....and what made me madder is they won't recognize it in the next person either because they don't listen and learn from the patient.....they either think they know everything already or we are exaggerating for drug seeking purposes.....I'm a RN and embarrassed by the medical profession.