I’m pretty sure this ongoing headache/stiff neck combo is somehow connected to the thryoid meds, because I’ve founds dozens of people online also complaining about it. Okay, not actual “people” – just women. And as we all know, if the menz don’t complain about something, it can’t possibly be true. Unless it is, as these things so often turn out to be, true.
The headache was still there when I woke up at 5 a.m.
I talked to the endocrinologist this morning and of course he says it has “nothing” to do with the medication. Even though the FDA site says it does – but what do they know? When I pushed him on it, he abruptly said, “I don’t know what to tell you. If it bothers you, stop taking the medication.” Very helpful!
Time to find a new doctor, I guess.
One doctor I was seeing kept telling me that “X was a POTENTIAL side effect.” Kept telling me that and telling me that — POTENTIAL. I told her, if I experienced it, it was no longer potential and I cut back on the medication on my own. Even a new doctor has insisted on the reaction as a potential side effect. So, seeing the pattern of my reaction I’ve changed the routine. Instead of taking it 3 times a day, I use it twice a day. In the morning, it bothers me, later in the day it doesn’t. Who knows why, but that’s what happens. Research showed me that the side effect is common to all drugs of that class/category so changing drugs won’t help.
Hang in there. Keep track of the patterns of reaction and see what modifications you can work out to the drug routine.
Nope, don’t find a new doctor. They’re all going to tell you the same thing. Just accept the fact that no matter what medicine you take, it will be treated like a poison by the body, which will try to eliminate it as quickly as possible. In this case, it’s a thyroid hormone, which the body shouldn’t object to too strenuously so your headache may be a consequence of your metabolism achieving some kind of normalcy. If that’s the case, it may be just a passing thing. Give it a few days.
OTOH, you seem to have greater than the normal number of complaints, aches and pains. You may just have a very low threshhold for pain and discomfort or an acute awareness of every bodily function that most of us ignore. I suspect you would drive me crazy if I were your doctor.
I gave birth at home. Did you?
Get a new doctor, although admittedly I’ve never found one (male or female) who shows a damn bit of interest in us wimmenz and our “psychosomatic, histrionic, fake” disorders. They’ll take our money, and then they don’t do shit.
The only way I got my thyroid stabilized was thru alternative healing and natural thyroid supplements. I use The Reference Point (Premier Labs products). You can have all your organs analyzed (via mail) thru your saliva (around $200 I think). I use their ThryoVen for my thyroid. I’ve mentioned this to you before and I urge you to investigate for yourself. I’m 67 years old, and I’ve managed to stabilize my thyroid by cutting down on the RX (which doesn’t seem to get properly absorbed no matter what I do) and upping the ThyroVen. You can get info online. (Also, avoid all soy.)
I got my regular thyroid test last month (I’m usually around 1.0, which is where I think it should be for women), and my test came back 8.8! They then upped my meds and I was acting like I was on speed. I demanded a second test (total cost to me $300) only to discover that the new reading was 1.23, which means they totally f**ked up the first test and I was essentially on speed. It took me two weeks to get back to normal.
Don’t trust any doctor. Trust your body. (And your body is very very unhappy and other organs may well be toxic.)
I now have a wonderful endo, very interested in tweaking dosages, in trying different approaches, and also into natural ways to cure/ameliorate.
She is, however, in Northern NJ, just off 280 a bit, not too far from St. Barnabas Hospital. Once things are pretty settled, it’s usually 3-4 visits a year –and that’s mostly because I have thryroid cancer.
BUT…you might be limited to only PA docs? Should I ask her if there’s anyone like her in the Phillie area?
She’s so good she’s almost a reason to stay in this area — a good endo is sooooo hard to find. I think you have my email; if you want her name/number, just let me know.
Susie,
I had a friend who had a wonderful (yes, rare) doctor who was not fond of jumping to pharma, and preferred starting with diet, vitamins and minerals. Unfortunately, I don’t recollect what type of thyroid problem she had, but her doctor had prescribed one of the B Complex vitamins (re: pill versus natural sources: some of the B Vitamins have become difficult to attain if one has little money). You may have already gone that route, but thought I’d mention it just in case.
Oh, and also, don’t know what your doctor has prescribed but I also know someone on the thyroid med Synthroid (sp?). She has taken it for years, but inisists on the non generic, as some of the fillers in certain generic meds have caused her a lot of problems.
Of course the obscene and outrageous part about non generics, are the extortionist prices. In a real Civilization, there wouldn’t be those sorts of, so many times deadly, exclusionist realities.
(As far as river daughter’s comment is concerned, I suspect she’s driven mostly everyone away who has had any pain that she had never experienced herself, if that comment was indicative of her response to other’s pain.)
As long as I do yoga and make sure I do the positions for the thyroid gland everything is OK with me. I am 78 and on the borderline of where my physicians assistant thinks meds would be a good idea. Since I don’t I do what I can to stay in the border area.
BTW if you can find a good physicians assistant that will work with you, treasure that person as they are pure gold. Not authoritarian I know it all like the MD’s. She pulls out the PDR and we go over the stuff together and decide together. I take estradoil and prometrium as both are natural. The scare of breast cancer from HRT came because the synthetic progestin was used. I found that out in a women’s medical book – forget her name but it’s a book on enjoying menopause. She went to Harvard med.
My allergies were building up, my eyes itching over the slightest irritation so I read up on the alternative stuff. Dr. Christopher’s eyebright pills. Some purists get the organic herbs, brew the solution etc. Me I just open one of his capsules and make a cup of tea with it and store in a babyfood jar for the week of twice a day eyewashes. All problems with the eyes gone like magic. Even when I pet my cats.
Eyebright has been known to clear up cataracts. Mine are at the operable stage for medicare. When you start to get them your eyesight gets better. Gee my nearsighted eyes got great for distance. I think my cataracts are getting better as my near sightedness is getting more so. I have read when you do eyebright your vision can worsen for awhile. But my eyes feel so great for the first time in decades and decades. I think I could even wear eye makeup if I wanted to now.
Yoga for the thyroid: head and shoulder stand easing into the plough. Be sure to do the reverse bend up with the arched back afterwards. Forget what it’s called.
Sorry about river daughter. She’s been nasty to me too. But she didn’t see the downturn and the unemployment thing coming at her. Bad situation as those jobs aren’t coming back. I told her to relocate to Singapore as they would welcome her and her daughter would love it. Nice place to live.
Have you read Dr.Andrew Weil’s books? Or check out drweil.com and do some research on your condition. There might be other better ways of handling your condition. I used to go through the women’s health forum frequently and have started discussion threads myself – and people with similar experiences might respond. Occasionally the moderator pops in to comment.
I should say I haven’t been there for a while.
Susie, I’m sorry your doctor seems to be one of the endos who goes by the numbers, not listening to what is happening to his patients’ bodies or their experience with the pills. What they’re “feeling.”
When I was still on a lower than needed thyroid hormone substitute (in my case Synthroid, and I didn’t have any allergic issues with it, at least that I could ID — I just never felt all that great), I experienced a sudden onset “frozen shoulder.” I simply woke up one morning unable to move my left arm away from my body without pain. I thought I’d slept in an awkward position. I could move it a ways, but that very quickly got down to almost no movement. Doing so for more than a few degrees meant excruciating pain, cry out loud with pain type pain. Bathing was very difficult; I remember tears coming to my eyes. I made myself a sling to hold my left arm in place, as just movement from gravity was terrible. Fortunately I had an automatic transmission, so I could get to the doctors.
I was sent to an ortho group, where I met all the criteria for frozen shoulder –except slow, gradual onset! My doc wanted a test beyond the x-ray, and my insurance company turned him down, so we were stymied. My memory of how this issue improved is very fuzzy. (I’ve noticed that I have, thankfully, a poor memory for remembering pain; since my back/leg pain can be very intense, I remember that it happened, but can’t really give a 1-10 level designation after it’s over.) But I do recall that my shoulder problem was clearly tied, timewise, to my Synthroid levels. It was soon increased; the frozen should melted with the first new pill. Yes, that’s temporal relationship, not proven causality.
In reading about people’s issues on the thyroid board, I remember others having similar things happen. Usually joint pain, not necessarily “frozen shoulder.” Some people went through months, even years, of testing and trying different drugs/treatments. A lucky few who changed mfrs or went on natural thyroid hormone supplements had almost instantaneous relief. Fillers causing allergic reactions? Their bodies needing more T3 due to not creating enough T3 from the synthetics’ T4?
There’s not all that much study done of thyroid issues, as it doesn’t have all that much profit and it’s primarily a female problem. Altho’ men do have thyroid issues, as my wonderful mechanic did, he didn’t feel much better and just stopped seeing his doctor. And all of us thyroid patients are told to “be patient,” over and over. My experience with Vit D megadoses did work out for me, but it took a long time, and now I tell myself to have more patience. Maybe this six-month try of something will be the thing that works for me*.
What I’ve noticed is that the great majority of users, based on the thyroid boards (those I read were almost all thyroid cancer boards) have very little difficulty with the synthetic thyroid hormones. But, alas, there a significant numbers who do have problems of varying degrees. Which makes sense, since most medications that get into production have to cover the large bulge of the bell curve in terms of efficacy and side effects. For those genetically not in the mid-ranges of the bell curve, medicines work –or don’t work– differently. And medicine is a “practice”: There’s more trial and error than we’d like to believe. Hence, some prescribed meds bother or don’t work in some people, and the docs just keep trying to find what works.
With thyroid hormone, for some docs getting the patient to maintenance of keeping the bodies’ main functions working, which they determine by blood test numbers, is all they feel is necessary. If patients complain of other issues, they’ll tend to say it’s not due to thyroid because the numbers are just fine. My first endo told me he was my thyroid cancer doctor and if I felt tired (or my hair was falling out or my skin was dry, etc.) I should see different doctor. Okaaay, then. Finally I could and I did — a different endo. (In his defense, he seems to have been a committed and very helpful endo for patients with serious diabetes problems.)
BTW, after nearly a year on Vit D3, with 5 mos on 100,000iu/week and now down to 35,000iu/week, my bone density test on Friday showed strong improvement over the test two years ago. I continued to have about 12oz of skim milk a day, plus unmeasured cheese, but that was no change from my previous diet.
*Frustratingly, I’m at the stage where each 6-month unit is a goodly percentage of my remaining life. At least my active life.
Very helpful, Jawbone. Thanks.