The day did however have some positive notes - being that I finally have a definitive diagnosis as to what has been going on for the last 5 weeks... (really for the last 16 years or so... but we'll get to that)
I officially got word that I have Chronic Fatigue Syndrome. I was diagnosed with this 16 years ago, but they really (once again) didn't know how to treat it at the time... their answer was thyroid medicine... which I've been taking now for well over a year and it certainly hasn't helped with the symptoms.
Want to know what the symptoms are? (with - CHECKs - next to the ones I have)
- flu-like symptoms such as pain in the joints and muscles - CHECK
- unrefreshing sleep - CHECK
- tender lymph nodes - CHECK
- sore throat - CHECK
- headache - CHECK
- post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period - CHECK
- word-finding difficulties
- inability to comprehend/retain what is read - CHECK occasionally
- inability to calculate numbers - CHECK
- impairment of speech and/or reasoning
- visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes) - CHECK
- psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings) - CHECK
- chills and night sweats - CHECK
- shortness of breath
- dizziness and balance problems - CHECK
- sensitivity to heat and/or cold - CHECK
- alcohol intolerance
- irregular heartbeat
- irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas) - CHECK
- low-grade fever or low body temperature - CHECK
- numbness, tingling and/or burning sensations in the face or extremities - CHECK - I think... I have occasional pain in my toes that feels like someone jabbing a needle in them
- dryness of the mouth and eyes (sicca syndrome) - CHECK occasionally
- gynecological problems including PMS and endometriosis
- chest pains
- ringing in the ears (tinnitus) - CHECK occasionally
- allergies and sensitivities to noise/sound, odors, chemicals and medications - CHECK
- weight changes without changes in diet - CHECK
- light-headedness - CHECK
- mental fogginess - CHECK
- muscle twitching - CHECK
From what my doctor says, there are viruses that cause this problem to be aggravated at different times - and apparently mine have been kicked into overdrive this summer. Oddly enough, those of you that were reading last summer... might remember that I went through a similar episode back then that was an extremely long period of being sick.
There are two main viruses that I tested positive for - only one of which I truly learned by name - Epstein-Barr virus is the one that I know I tested positive for back in 1995 - and still have active today.
Some interesting information I found online about Epstein-Barr:
Epstein-Barr virus occurs worldwide. Most people become infected with EBV sometime during their lives, and therefore gain adaptive immunity, preventing repeated sickness from re-infection through EBV antibodies. In the United States, as many as 95% of adults between 35 and 40 years of age have been infected. Infants become susceptible to EBV as soon as maternal antibody protection (present at birth) disappears. Many children become infected with EBV, and these infections usually cause no symptoms or are indistinguishable from the other mild, brief illnesses of childhood. In the United States and in other developed countries, many persons are not infected with EBV in their childhood years. When infection with EBV occurs during adolescence or young adulthood, it causes infectious mononucleosis 35% to 69% of the time.
While it is a pretty common virus that most of us carry - I'm guessing that it is like other things... where some people have a natural immunity to it and never even know it's in their system - while others are heavily effected by the virus.
It sort of reminds me of a story I've heard all of my life about when I was a toddler - apparently I picked up the hepatitis A virus and gave it to my mother. She was sick for a long time - but I never showed any signs of having the virus... so I was determined to just be a carrier. I wonder now if that has something to do with this mess that I'm in... but that would be FAR down the list of things that I'd like to ask the doctor about.
There is a viral suppressant medication that they are going to be putting me on for around 3 months - then we'll retest the viral levels in my blood. There has been some success with symptoms lessening and people feeling better after having taken the medication... so I'm hopeful that this will be the answer that I've been looking for.
I am happy that someone is finally able to put all the pieces together for me and give me some hope that this can be treated - and that I'm not just some sort of crazy hypochondriac. It does all fit together, and I can rest in the fact that I know enough about my own body that something wasn't right.
I'll be picking up the medication this evening and starting it - I'll take it in the morning and evening - so we'll see how long before it makes a true difference for me. I'll be cutting the pills into smaller pieces because I want to make sure to get maximum absorption.
You might be wondering, as I was, if this means anything for our moving forward with fertility treatments - and they have assured me that it will be perfectly fine for me to move forward with those treatments and with getting pregnant while on this medication. So hopefully in just a few more days we'll be moving forward with bigger and better things.
Before I leave this post - I just want to tell you all that if you are experiencing any number of the symptoms listed above and want to talk with me more about what has been going on and the day to day issues with all of this... please drop me an email - I'd be happy to talk to you about it and help you seek the right doctor to be able to help you figure out if you have a similar problem going on.
Please don't think that you are crazy if you are experiencing things with your body that just don't seem normal... don't take one doctor's word for it - because as you might already know with me - one doctor doesn't believe this condition exists while another is ready, willing and able to treat me right now... Know that you know your body the best, and if something doesn't feel right... don't stop until you get an answer that seems appropriate for you.
Ok before I forget - when you pick up the medicine, ask for a pill crusher. It will be less than $10 and it crushes the pills into a powder that you can then either just take or add to a bit of applesauce. I worked at a nursing home for awhile and they did this for the patients that couldn't/wouldn't swallow pills anymore. I am guessing that the applesauce keeps you from aspirating the powder.ReplyDelete
That said, Congratulations/I-am-so-sorry. I know you are relieved to have a diagnosis but it really stinks that it is chronic.
After reading your symptom list, I may need to back on my thyroid medicine. (Long story- nagged my dr into giving me a presciption, he wasn't happy about doing it, I stopped taking it while on vacation and haven't started it back up.) I have been running a lowgrade fever since sunday and just haven't felt my usual perky self.
Good idea, Christi.ReplyDelete
At least now you know and can get on a treatment plan. I can imagine how frustrating it's been to know something was wrong but to have your doctor pass it off as nothing.
Even better is that this won't get in the way of fertility treatments and you can get going on that! Yay!
Um, i don't want to sound negative here, but conventional medicine doesn't know how to treat these things very well.ReplyDelete
I've had both EBV & Chronic fatigue for a long time, but it has gotten much, much worse in the past 2 years since i had a course of Cipro. Anti-virals also made me very, very ill.
I know it is a relief to have an answer & focus on that, but it is not a quick fix.
I know this sounds very negative & i don't want to, but it has been a long, long, hard road for me & docs don't always listen well.
If you are interested i can direct you to a health site where this is one of many things discussed & a number of folks there fight this, so it is a good support system.
The Lord's blessings on you. I pray that you will soon be better.
Hi... I stumbled across you looking for links between cayenne pepper and thyroid. But the reason I am leaving you a note is to tell you about a fabulous site: http://stopthethyroidmadness.com The owner of the site pulls all the missing pieces for hypothyroidism together.ReplyDelete
* Did you know that chronic fatigue are just SYMPTOMS OF hypothyroidism AND adrenal fatigue? More than 50% of all hypothyroid patients suffer from adrenal fatigue ranging from mild to severe and must be addressed by supporting the adrenals by either lowering high cortisol, taking adrenal supporting herbs like licorice, ashwaganda, or adrenal supplements like isocort or adrenal glandulars in mild low cortisol or replacing cortisol with rx hydrocortisone severe adrenal fatigue (stage 5 and below). A 24hr saliva cortisol test is the best way to determine how severe adrenal fatigue is.
* In order for synthroid - a T4 only med to work, you MUST be able to convert it to T3! A lot of hypo folks can't and that's why they still feel crappy on T4 only meds. Desiccated thyroid meds like Armour and Naturethroid are a better choice for ridding you of ALL hypo symptoms.
* The correct way to measure if you are on optimal doses of thyroid meds is NOT the TSH, but rather Free T3, Free T4, RT3* and both antibodies (see stopthethyroidmadness, and a COMPLETE absence of hypo symptoms. RT3 is important if you suspect that the T4 is not converting to T3 because of adrenal fatigue, feeling still crappy is a sign.
* In order for the thyroid meds to even get to the thyroid, your ferritin values should be at LEAST 70! Ideally they should be around 90.
* In order for the amino acid tyrosine to convert iodine to thyroid meds, your vitamin D levels should be optimal? Latest news, 90% of the US population is deficient or low in vitamin D. Optimal values should be above 60, which will protect you against the swine flu according to some studies btw.
* Hypothyroid people are DEFICIENT in iodine. Bromide and fluoride found in our water, toothpaste, bakery products (bromated flour), soft drinks (gatorade and mountain dew have bromated vegetable oil), compete with the lack of iodine in our diets and are absorbed by our body's iodine receptors in place of absent iodine. Dr. David Brownstein "Iodine: Why you need it, Why you can't live without it". and http://www.iodine4health.com are good resources for iodine info.
Also, you do not want to supplement your iodine deficient diet with kelp tablets because they are known to be contaminated with arsenic.
* Important missing keys to continuing fatigue even when your FT3 and FT4 values are optimal are low b12 (should be in the upper range 800ish). Ditto vitamin D, low values cause fatigue.
* Important supplements: Vitamin C (2 or more grams daily for adrenal fatigue -- buffered mineral ascorbates are best)
B-complex + extra b12 (methylcolabine if defficient)
seleniumethione is important for the thyroid at least 200 mcg daily.
Tyrosine 500mg-1000mg is needed for adrenal and thryoid support (look it up on wikipedia for more info)
Magnesium is important too most hypothyroid folks are deficient in magnesium, symptom: muscle spasms, body aches (also vit. d deficiency symptom)
Also, Vitamin A.
This is just a bit of the information that you can find on Janie's site: StopTheThyroidMadness.com. I have absolutely no affiliation with Janie or her site, other than I stumbled across her site last spring and she gave me my life back.