Patricia’s Story

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.