Here’s the Thing
In the past month I’ve been to two doctors and have had four drugs prescribed, all of which I have declined to take.
A New Year brought a new array of symptoms on top of the ones related to Chronic Fatigue that I’ve been managing for years. The worst new symptom had me worried about my heart when angina-like pain woke me at night more than once. The first doctor suspected acid reflux and, although I didn’t have any heartburn, when I put all my combined symptoms together, I agreed. But I declined the little purple pill, and opted for a round of pro-biotics, enzymes, and aloe vera with good results so far.
When my blood work came back and it was discovered that my cholesterol had suddenly shot up 100 points, I was offered at statan drug to lower it, along with an anti-depressant, just to see if I’d feel better on one. The doctor, to her credit, was interested in ruling out things that might be responsible for my long term Chronic Fatigue symptoms. Once she discovered that my thyroid tests were not completely normal (I told her they wouldn’t be) due to the antibodies I make against my thyroid, she referred me to an endocrinologist.
I was treated for hyper-thyroid in 1994, so seeing an endocrinologist wasn’t new to me. While on medication (PTU) then to block the production of thyroid hormone, my fatigue was greatly relieved, but as soon as I went off it my symptoms came back. That endocrinologist had no suggestions for improving the way I felt once my thyroid levels returned to the normal range (even though I was still making anti-bodies).
Okay, so now it turns out that my thyroid levels are on the low side. They’re not low enough to treat, I was told, but “they may be too low for you,” the new endocrinologist told me, as he was comparing my current levels to those of a few years ago. Then he suggested I go on Hormone Replacement Therapy (HRT)! HRT is something I had no intention of using even before the recent findings on the risks involved with taking it came out. If I had dramatic symptoms that I thought could be helped by it, I’d consider it, but I don’t and I haven’t.
Thirty-five years of troubling symptoms that don’t fit in standard disease category is a lot of baggage to carry into a doctor’s office. Each doctor has to start from square one. Most of my symptoms aren’t new to me, but as a new patient, I sometimes feel like some doctors think I was born yesterday. If I could just transmit everything I’ve learned and tried over the years, we might be able to get on the same page, but it hasn’t happened yet.
I wasn’t sure that I was getting through to the doctor that I was a low-maintenance patient, one who wasn’t interested in the treadmill run-around of taking medicines with possible side effects sometimes worse than the symptoms they’re supposed to be treating, so I told him.
“I’ve had most of my CFS symptoms since I was in mid 20’s,” I said. “And I’ve been taking Chaste Tree Berries to balance my hormone levels and it’s been working fine.”
When he made light of an alternative therapy to improve adrenal function to an intern who was also in the room, I said, “The people who try alternative therapies are those who haven’t been helped by the mainstream medicine. And if the treatments bring relief, why not?”
According to “Solved the Riddle of Illness,” a book by Dr. Stephen Langer about the relationship between thyroid disease and many other diseases, I fit the profile of someone with Hashimoto’s Thyroiditis. Hashimito’s is an autoimmune disorder that can cause the thyroid to go hyper or hypo at different times of life. I wondered why the doctor didn’t suggest trying a low dose of thyroid hormone (something that has no risk) instead of HRT (something that does). But it wasn’t until I got home and pulled out “Solved The Riddle of Illness” (I wish it really was that easy), a book that I read many years ago, that I discovered all the new symptoms – slowed digestion, shortness of breath, trouble swallowing, and even the spike in cholesterol – could be related to low functioning thyroid.
When it was time to leave the treatment room, I picked up my coat and pocketbook and followed the doctor out, walking down the wrong way through the hallway. “You’re going the wrong way,” he pointed out.
“Oh, I have dyslexia too. Do you have a pill for that?” I joked.
He laughed, but I could see that he also seemed to be pondering what pill he could suggest.
February 21st, 2007 10:24 am
Colleen, I understand your frustration! I have Hashimoto’s Thyroiditis(the hypo version) and have been taking Armour Thyroid for several years. It has helped me. However, I am one that resists drugs. I think the less we use the better. Only when absolutely necessary. I didn’t take the doctor up on HRT either. I developed Type 2 diabetes and a dash of arthritis around the same time the thyroid went wacky. I remember sitting at my endo’s office and saying, “I know these are somehow tied together.” This highly educated man said, “Maybe so but it’s not been proved.”
Colleen, it can be so frustrating! Hugs to you for doing the extra work to try alternative therapies. My most recent desire is to find an osteopath. Have you heard of Robert Fuller…he died not too long ago but did some amazing things with osteopathy. I was reading about him in Andrew Weils “Spontaneous Healing” book.
Here’s to your health and happiness!
Susan
February 21st, 2007 10:25 am
P.S. I love your shadow photo. I’ve been reading up on the “Shadow” side of our personalities…very interesting.
Susan
February 21st, 2007 10:37 am
kudos to you for being an “informed” patient. i think we tend to lose our brains when seeing physicians- the whole process of getting shuffled in and out so quickly sometimes leaves me realizing afterwards that i didn’t get to discuss anything i wanted to. i’ve had to stop the physician halfway out the door before to ask a question b/c they were in such a hurry. i really hope you find a way to relieve all of your health-related problems!
February 21st, 2007 10:37 am
Hi Susan,
Well we are kindred in more ways than I knew. The shadow shot is me watching for manatee at Manatee Springs Florida. They are almost as elusive as piecing together this mystery that I’ve been dealing with since I was 19 (The first symptoms was a clinical major depression/anxiety disorder that was not situational and is described well in Langer’s book in the Hashimotos chapter).
Did you click the article for Hashimotos? It’s one of the best descriptions I’ve read (short of reading a book). People with it can be high or low or in the normal range of thyroid levels but their immune systems are still compromised. I’ve been on Armour before and am back on it again. It has helped a lot. I like it because Synthroid only provides T4 but Armour, which was used for a long time before synthroid and such came on the scene, provides both T4 and T3. Some people don’t convert T4 to T3 on their own.
Amy, I agree that doctor visits can be very dizzying and often un-empowering.
February 21st, 2007 2:36 pm
Colleen, I too sympathize. I have a whole host of autoimmune disorders.
I recently, and finally, found a really aggressive (in a good way) and communicative endocrinologist and that has helped so much.
Apparently, my body has decided to attack my thyroid and pancreas in ways that are just not so helpful :0. I’ve also developed allergies and food intolerances to cope with in the last few years.
At least when I talk about these new issues and challenges, my Dr. does not look at me like I am crazy.
And at least she is honest with me that they have no idea why autoimmune disorders happen and she can only help me so much. Life is hard and all that.
And, most of all, she takes the things that I report to her — the way I experience and understand my body — seriously. Hallelujah!!!
Oh, and I chose a traditional treatment for my overactive thyroid five years ago — radioactive iodine — and have been hypo ever since. I think it was a mistake, because I have felt like sh-t ever since, even with the synthroid.
Sorry to go on so long, but I just know how hard, mysterious, and life changing this stuff is. And dealing with doctors about it may be worse than the illness itself.
kim
February 21st, 2007 4:04 pm
Hi Kim,
Maybe you should look into Armour Thyroid because Synthroid only provides T4 and not T3 and some people don’t convert it. It might be worth a try. Google it; they have a website.
My mother and maternal grandmother both had their hyper thyroids taken out! The PTU worked well for me to get my hyper-thyroid back in the normal range. I think a big clue into my issues is that my CFS was improved while I was on that med and as soon as I went off it my fatigue symptoms came back. One of my sister’s was also treated for hyperthyroid and she didn’t have any hyper symptoms.
I’ve definately been through the rigamaroll with doctors too. And I’ve felt like crap for the past 30 years but have moslty learned to over-ride it, and to meter out my activities.
Thanks for sharing. It’s helpful to know I’m not alone.
February 21st, 2007 4:12 pm
So wiered how our lives (yours and mine) sometimes connect and cross. My doctor is also doing some blood tests today as he thinks my thyroid is acting up! Like you I put off taking medications until I absolutely think there is no other solution. I took HRT for three months,long before the famous studies, and found that while it masked my menopause symptoms, it added new more nasty side-effects so I stopped.
February 21st, 2007 4:58 pm
Thanks, Colleen. I’ll definitely check into the Armour and talk to my doctor about it at my next appt.
February 21st, 2007 5:00 pm
Oh, I also meant to say that I understand, with regard to feeling like crap…
“but have moslty learned to over-ride it, and to meter out my activities.”
That’s life!
February 21st, 2007 5:08 pm
I so applaud you Colleen for taking your health into your own hands and really helping yourself more than The Medical Profession. I know this will offend some people but I find the limited view of Doctors, deeply deeply discouraging and “alternative” choices—Thank God we have them—many times bring the relief and answers one needs. They say we have to be the Captains of our Ship, in this case our body…and I agree. Much Good Luck to you, my dear, with the Thyroid problem….!
February 21st, 2007 6:10 pm
According to Dr. Langer’s book, one way to get a quick take on thyroid function is to take your temperature. Normal is 98.6. If yours regularly falls under 97.6 your thyroid levels may be too low for you. What doctors consider normal is a range and if you fall on the low end of normal that could be low for you. They also don’t do an anti-body panel unless you ask for it. If you’re making anti-bodies that’s a good indication that something is wrong.
February 21st, 2007 6:19 pm
Colleen,
Your post reminds me how important it is to take responsibility for our own health and not blindly turn it over to the white coats. Educating your docs sounds exhausting in itself. My mom has had Chronic Fatigue since the mid 80s (it forced her retirement from teaching). That was back when it was called Epstein-Barr. I know she has had many frustrating experiences in doctors’ offices. I wish you the best in figuring things out and having a healthy 07.
February 21st, 2007 6:32 pm
arse.
sorry can’t think of anything more constructive to say.
i will try the positive thinking thing later 😉
February 21st, 2007 8:50 pm
Nice to hear from you, Neil.
When I contracted Chronic Fatigue in the late 70s there was no name for it at all. Recently, there’s been a breakthrough by way of a gene that’s been implicated in people who have it. The underlined link in this post on the words “Chronic Fatigue symptoms” leads to a post that explains it. My blood tests show that I do have the marker for having Epsein Barr, but it’s pretty common for that to show up. I haven’t been able to work full time since I first got CF but I’m also not as disable with it as so many are.
February 21st, 2007 9:13 pm
I don’t understand why people even go to the doctor if they aren’t going to work with them on a treatment. Research continues… something that might have not been treatable 20 years ago may have a therapy today. If you think your homeopathic therapy is working, then I wouldn’t waste my money on a doctor’s visit.
February 21st, 2007 9:24 pm
I really was interested in your thyroid info. I’m on synthroid, a generic version for insurance coverage, and just had my prescription rewritten after the latest round of blood work. My arm still has the bruise from the needle, that’s how timely this post is!
My thyroid under works, though. I really like my doctor. She is from India orginally and really into recommending holistic treatments and walking.
February 21st, 2007 10:45 pm
srp, When I go to the doctor it’s mostly to help with diagnosis. And I try to find one who will work with me. Once I know what I’m dealing with, I make changes, but I don’t always choose to take the medical prescription route which mostly treats symptoms rather than addressing causes. In this case I had some new symptoms that I didn’t understand, which the first doctor rightly diagnosed. She referred me to the endocrinologist because of my history with thyroid problems (and the anti-bodies). I checked him out particularly because I thought some new treatment may have come along, but none had, and I didn’t find him to be very helpful. In this case, she was, he wasn’t.
I didn’t go to him for menopausal symptoms, although those changes are likely why my thyroid levels are lowering. Don Quai is an herb. It worked so well that I started to forget taking it and then my symptoms came back, so I started up again and am back on track. That’s how I know it helps. I started a small dose of Armour thyroid about a week ago and things are starting to slowly improve.
Glad you have a good doctor, Karen. So many people seem to have thyroid issues!
February 21st, 2007 10:56 pm
Wow, I JUST went to yet another doctor today, a Rheumatologist to get an assessment for Fibro and he had taken 10 vials of blood, all of which he said were normal except of course, my high sugar. I have had low thyroid results before but not low enough to treat. My husband , a chiropractor, did the 18 points test for fibro this morning and I have 11, which meets the criteria. All I’ve ever done is take tylenol for pain and balance my energy as well as try to exercise.
I too, had higher than optimum cholesterol and 6 months later had a heart attack. I know with everything combined, I can’t possibly go back to work, not even 1/2 time, yet government disability will probably deny my application again because all this Fibro/CFS/Diabetic Neuropathy/2 degenerated disks/ Heart Disease are not viewed altogether to get the sum total of what it’s like to live with all this daily.
Stress really magnifies all this. I’m on amitriptyline for muscle pain but it only takes the edge off slightly, makes me thirsty and fatter! UGH! Sorry to rant, but I just came from that whole session and then read this. I do so empathize with you! So many connections here!
(I found black cohash and wild yam mix really helped hot flashes etc. but then I ran into liver problems and went off everything…black cohosh was listed as a possible cause of liver stress)
February 22nd, 2007 12:04 am
I have to have blood work tomorrow and a visit with the doc next week. I know she will put me on a statin drug, and I don’t want to take it, fearing the muscle pain and weakness so many report. What to do?
February 22nd, 2007 8:23 am
As you know I haven’t had 35 years of troubling symptoms, but I’m having my share now and I can agree 100% and appreciatively so with what you’ve written here.
I was lucky enough to read (maybe 35 years ago), “Confessions of a Medical Heretic” by Robert Mendelsohn. He offers his schooled opinions, correctly so in my own, about orthodox medicine and how we’re headed in the wrong direction with pharmaceutical drugs leading the way.
Well intended physicians, and many are that, fall into the traps set by the medical community (drugs drugs drugs) as readily as do the patients who just want to get well.
Often we are our own best judges … trouble is, when something is medically out of balance, we have to battle not only the disEASE but also the “Church of Modern Medicine” (as Mendelsohn calls the medical establishment) to effectively get back to the place called HEALth. It’s hard because we want to believe that the benefits of the drugs and procedures outweigh the risks of the side effects. Unlikely.
Can’t wait to read “Solved the Riddle of Illness.”
February 22nd, 2007 8:38 am
Bless your heart Colleen! Don’t take those statins unless you’ve tried diet, exercise and the red yeast rice thing my husband does. He jumped on the Lipitor wagon once and the stuff nearly destroyed his otherwise healthy youthful body. He started tearing ligaments and muscles at every turn. So he stopped statins and took a different approach. Both of us are hereditary high cholestrol people so diet and exercise only do so much but the red yeast rice really works for him, and while my bad is too high (155 last time) my good HDL is really high and my triglycerides are only around 45-50 so I refuse to take any meds.
My doctor is very good about other approaches than medications which I like. Too many people pop that pill before they understand the side effects.
Now on the opposite end of that my 59 year old neighbor that just had the massive stroke and may never walk or talk again had stopped taking his blood pressure meds. He’d lost weight, ate healthy, didn’t drink anymore, worked outside a lot and thought he had it under control a more natural way. But it didn’t work. I guess meds are important there. Your blood pressure can only stay sky high for so long without blowing!
I hope you get straightened out. I know you will make sure whatever you take or use will be the healthiest choice for you.
February 22nd, 2007 8:56 am
I researched high cholesterol for my brother-in-law and told him about red yeast rice, but had completely forgotten about it for myself. I’m also using lecithin which breaks down fats. I’m hoping that if I bring my thyroid levels up it will lower my cholesterol, since high cholesterol is one of the symptoms of low thyroid. I wish my cholesterol was as good as yours, Deana. A few years back it was 104 and now it’s 214!
You’re point about your neighbor who had a stroke is a good one. I’m certainly not against all drugs and was happy to take PTU when I needed it. And I would have stood in line for an anti-depressant when I was 19 but they didn’t exist then.