More than just her story, this is a wise and eloquent list of recommendations from Patricia concerning being your own best advocate in your quest for better health. A must read!
I too was diagnosed with “thyroiditis”, treated with aspirin and told I was “cured” within a month. Never felt any better – in fact, slowly got worse and worse over the course of the next ten years or so. My TSH levels were always normal – so my symptoms just got ignored. “itis” just means swollen – so what the doctor was saying is “your thyroid is swollen and I don’t know why – but since your labs are within the normal range, I really don’t care because there’s nothing I can do about it.”
Finally I was diagnosed with Hashimoto’s Thyroiditis by an Endo with needle biopsy (Hashi’s is the most common form of “thyroiditis” by far). Still even after dx, I was told there was nothing to do because of my lab tests (TSH) remaining “normal”. I was told that the symptoms I was complaining of had “nothing to do with my thyroid” and I should see my “own” doctor.
If your bloodwork doesn’t conform to the pre-determined lab tests, your symptoms will be denied and/or you will be written off as crazy. That simple fact is probably what has most of come here on this website.
Here’s what I’ve come to learn: Apparently, there is no real cure “treatment” for Hashi’s (or any other autoimmune disease per se). Your own body is attacking your thyroid.
I have found that it does this with increasing regularity as the disease progresses. Whenever my “immune system” is engaged for whatever reason – allergies, virus or I’m overly tired or stressed – that same “immune system” will attack my thyroid. When your immune system is engaged for any reason, you will feel like you have the flu. In addition to “flu-like” symptoms, you will have the symptoms particular to the organ being attacked. When the thyroid is attacked it will react in one of two ways – with either “Hyper” (dumping hormone into your bloodstream) symptoms – racing thoughts, heat intolerance, heart palpitations, wired/tired kind of fatigue, anxiety, weight loss, loose stools(think fast and furious) or with “Hypo” (not putting enough hormone into your bloodstream) symptoms – sluggish thoughts, slow movements, sluggish bowels, weight gain, cold intolerance, depression, fatigue. Of course, there are as many symptoms as there are sufferers – some people swing back and forth between hyper/hypo while their poor thyroid is being beaten to death – others (like myself tend to stay “hyper” and then crash all at once) after years of immune attacks.
While all this is happening, you are putting enormous strain on your adrenal glands as they try to make up for the stress and strain and hormone imbalance of the thyroid. Other systems of your body are also being overly stressed and “beaten up” along the way. Nothing exists in a vacuum – especially where hormones are concerned. The body will ensure the basic life functions before all else – it will keep your heatbeat going, your respiration moving and your blood flowing. It won’t care if there’s any life-force left over for lesser things like energy or mood. You are now working on a subsistence budget and only the “big” things count. So you will be alive but miserable.
Do this for years (like I did) and you will be very sorry (like I am). I am paying the price now for my own ignorance.
I AM BY NO MEANS A DOCTOR – I AM A SUFFERER LIKE YOURSELF AND HERE’S WHAT I WISH I KNEW/DID YEARS AGO. WHAT WORKS FOR ONE PERSON DOESN’T ALWAYS FIT THE NEXT ONE SO YOU HAVE TO FIGURE THIS OUT FOR YOURSELF.
Step No. 1: Get it out of your head that “The Doctors” or some special doctor who really “understands” is out there just waiting/wanting to help you and it’s just a matter of finding that right one and you’ll finally get treatment. It isn’t gonna be that way. It’s the prince on the white horse dream all over again. Mainstream doctors couldn’t help you with this if they wanted to – it’s not part of their vocabulary. It’s like asking a trout to recite Shakespeare – he doesn’t have the ability. You do not fit the “sick” criteria because of your normal labwork – that is all he or she has to work with. After that, they can only give you “guess at it” drugs – prozac mostly.
While you’re at it, get it out of your head that your insurance company is going to finance your pursuit of health. It won’t. I truly believe that our notion that all our health needs will be paid for by our “plan” is in large part what fuels the sorry state of our health care. Doctors hands are tied by the insurance companies concept of “standards of practice” and can’t think or act beyond what is predetermined by them. Add to that the well-known pharmaceutical industry’s takeover of medicine in this country, and you will eventually understand that you cannot really “squeeze” by with what your health plan is willing to work with.
Step No. 2: Decide that you are going to be your own primary physician. Decide that You Will Save You. Take responsibility for your own body/health/thyroid right now. I believe that this “switch” in thinking about our health can be the most pivotal, far-reaching step we can ever make. It is the difference between being passive and empowered – that shift in energy alone will start good things happening. As a bonus that shift will bleed into everything else in your life and begin to change how you feel about yourself and the world in a positive way.
Step No. 3: Educate yourself. Read everything you can on “Thyroiditis” and the thyroid and autoimmune disease and then read some more. I’m sorry to say that if you do this for a day or two you will know more than any of the doctors that you thought would help you. Use your intuition and notice when something “resonates” with you. Print things out and put them in files. Set yourself up as your own working physician. Be the best physician you can be to yourself. Ask questions (like you’re doing on the forums here on STTM). Ask for referrals, opinions and other peoples’ experiences. Give yourself a free and unrestricted medical education.
Step No. 4: USE your doctor for the blood tests, etc. you want to see based on things you have learned. Think twice about about the “treating the symptoms” approach of pharmaceuticals that will be offered to you for things like “high cholesterol” ( a common manifestation of hypo-thyroidism), etc. Remember that our mainstream medical professionals are not seeing the “forests for trees” in regard to thyroid/autoimmune patients. They will want to treat each symptoms like a separate disease (that makes the pharmaceutical companies happy too). It generally seems better to use nutrition and other non-chemical means to support and heal the affected organs and systems. It has been my experience that most people gain ground this way.
Step No. 5: Find a good doctor (based on word of mouth and reputation). You can ask on this site, too. He/She will be more likely to understand that your symptoms are all connected and treat the whole body. There are many roads to health in this regard it could be an osteopath, a chiropractor, an acupuncturist, and nutritional expert… Still NEVER, NEVER give up your own autonomy over your own body and your own health. This is a sacred commitment that you have made to your body – let no one take it away.
Step No. 6: Look at ways to support your body nutritionally and stress-reduction-wise. Become friends with your local health food store owner – they are very wise. Read about the effects that mass production of food is making on our health. Look into yoga or Tai Chi or Qi Gong or meditation. Feed your soul and strive for peace and calm. Laughter too, really is the “best medicine” – whoever said that was a genius. I think very often we “thyroid types” take it all too seriously!
Step No. 7: Educate yourself, read about all the theories out there in regard to health and then make up your own mind based on what strikes you as logical and what “feels” right to you.
I know you didn’t ask for this. I know you never wanted to be a health “expert”. I know you never wanted to be a doctor. Neither did I. I just wish I had understood that “I already was” a lot sooner than I did.