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I neglected to mention that 12 years ago for my 40th birthday, my thyroid went into storm mode. I was such a mess with a HYPER thyroid that I just went along with the doctors and drank the nuclear cocktail to knock down the hormone output. I now live on replacement hormone each day. I have noticed that my quality of life has changed and is changing only since that happened. I was aware of my MC all my life and managed well. The last 12 years have not been good and especially the last 4-5. Any connection you know of ?
David, which thyroid medication are you on? I had to start taking thyroid hormone about 30 years ago and did fine on the Armour pig thyroid until about 1995 when they changed the formulation and I was allergic to the fillers.
I tried the T4s like Synthroid and my muscles were a mess so we kept trying to find a combination T3/T4 I could tolerate. I finally found Thyrolar which is a synthetic made by Forest Pharmaceuticals and do great with that one. A couple of times it was pulled from the market for potency issues and I had to use another brand...again my muscles were very stiff and I had the pain you talk about.
I stopped taking thyroid for about a year one time because my doctor didn't think I needed it, and I developed myotonia so severe I sounded and looked drunk and I also had heart failure.
It might take some tweaking for you to find the right formulation, but it can make all the difference.
But Jan - HOW do you convince a doctor who says your thyroid is "normal" to experiment for the sake of your MC?? I'm sort of interested in maybe pursuing this, but I have no idea what to say to my PCP, so I don't sound like a von Munchhausen hypochondriac. Lois
Hi, I take Armour Thyroid 150 mcg once daily. You story sounds like mine. It took five years and six endocronologist to realize they were killing me with synthetic hormones. My hair fell out, I gained and lost over 100 pounds, I looked like a blow fish and when I would shower it felt like my skin was an opened wound and the water was bleach. I had to take matters into my own hands an research my NATURAL options. When I found Armour Thyroid, I went to my family doctor and said I'm going on this. We had to wait 2 weeks to get it as it wasn't available. Now, many people in my area take it. I've been on the same dose for 7 years. My advice is to take your health and well being and forget about how you're viewed. You're just a number anymore anyhow
Hey Jan, you bring up an interesting point. I can't rule out that my pain isn't from Armour Thyroid medicine. Maybe I should look for another natural remedy.I did try Thyrolar but, had the same problems.
Lois dear, if your doctor can't agree to a simple blood test for Thyroid at your request, find one that will. I worried about being labeled a nutjob too but, when you go through a lot of small town doctors looking for answers and they don't or can't help you, you go to the city to find your answers. When you get your answers, you're a step further which proves you weren't a nut, just someone looking for a doctor like "HOUSE" who can nail your symptoms.
I have to preface this by saying I'm not a doctor and not trying to prescribe, but in general if your thyroid was "nuked" to stop hyperthyroid storm you would need at least 3 and probably 4 grains of thyroid per day to compensate (you can even get a 5 grain strength) which would be 180 to 240 mg. With Armour this translates to 38 mcg T4 and 9 mcg T3 per grain.
I take 1 grain equivalent of Thyrolar per day or 60 mg. However if I cut that in half and take 30 I will get so stiff I can hardly walk...it makes that much difference to get exactly the right dose.
Since my blood tests are always fairly normal even when I'm not on the replacement we decided to go by symptoms instead including temperature, dry skin, hair loss, poor fat metabolism, etc.
Lois, the best way to approach your doctor is to keep a journal of your body temperature. If it's running below 98 degrees you will almost certainly benefit from replacement. They can always start with a low dose like 1/2 grain and go up from there. I actually felt best and had the most normal temperature when we got up to 2 1/2 grains, but my doctors were concerned about suppressing my TSH levels too much. My temperature runs about 97-98 most of the time...when it's lower I have more muscle pain and stiffness.
David, I don't know what exactly has changed with Armour in the past several years, but last spring I took it for a couple of months and my TSH levels were very high which meant it wasn't working for me. I switched back to Thyrolar and they normalized. When they first changed formulations back in 1996 many people who had used it fine previously no longer saw benefits and began to have symptoms of hypothyroid even though it was the natural form.
There is another brand you can try called Westhroid. I did okay with that as far as muscles being more relaxed but I am allergic to pork and decided to stay with the synthetic Thyrolar to avoid making any antibodies. I ordered Westhroid through a compounding pharmacy since most large pharmacies don't stock it in their warehouse.
The molecules that make up thyroid hormone are so small and simple that I feel confident that you can get the same benefit. HOWEVER the real problem is that most of the synthetics are only T4 (no T3) and many people have trouble with the conversion. It seems like adding T3 to the mix "primes the pump" since it is the active form and makes the T4 more usable.
I'm pasting in a recent study below about myotonia and hypothyroidism. It doesn't refer to MC, just that people with hypothyroid can develop a type of myotonia and it may be a presenting feature.
2007: Mrabet H; Masmoudi S; Mrabet A
[Myotonia and hypothyroidism]
Revue neurologique 2007;163(8-9):837-9.
INTRODUCTION: Hypothyroidism is frequently associated with different neuromuscular disorders. However myotonia is rarely a revealing feature.
CLINICAL CASES: Two patients aged 28 and 31 years consulted for a progressive myotonia. Blood and thyroid analysis revealed peripheral hypothyroidism with low FT4 and high TSH levels. Outcome was favorable with thyroid hormone substitution. Myotonia regressed and thyroid hormone levels returned to normal.
CONCLUSION: Myotonia may reveal hypothyroidism. The pathogenic mechanism of this myotonia is an unknown. Good outcome with thyroid hormone substitution requires a systematic thyroid hormone screening in patients presenting neuromuscular manifestations.
WOW ! I don't want to jump to conclusions but, if my problem has been lack of Thyroid hormones amplifying my Myotonia, then, you're a life changer ! I goofed ! It's not 150mcg it's 150 mg .It's interesting that you mention body temp. Imagine, I've had my temp.taken a gazzillion times and it runs 97.1-98.3. You'd think someone would say," hey, 2+2 doesn't add up here, this ain't right" but no, they write it off and say' Oh you must be cool in the summer". Many have actually said that and doctors ( endocronologist) have never made the connection.What an eye opening !
Thanks Jan - Will do. I almost always run low - always have. I kept a basal journal for many months in 1979-80. I think they thought I didn't know how to take my temp, or was too impatient and didn't leave it long enough!! LOL!
David - I have annual labs done - my thyroid is always normal. Now he's checking it again, because I have been having greatly increased palpitations in the last 3 weeks (have had mild, transient, occasional ones most of my life - seconds or minutes, but this is weeks...)
I have a mild heart murmur, but my echos and EKG's have been fine, but now seems may have PAC's (small premature firing of the muscles of the atrial chambers, which give the fluttery or pounding sensation - usually not dangerous). lois
Thank you everyone for your input regarding the thyroid. An ENT doctor discovered two nodules on my thyroid a few months back. I have extreme fatigue, low libido, and become cold, then hot. Of course, this may be due to menopause as well, but the doctor believed the nodules were causing a sluggish thyroid.
Your discussions about body temperature made me realize that my temperature is usually lower than 98. I was on a thyroid med, Levoxyl I believe, for only 3 weeks because I felt that I would bounce off the walls and couldn't sleep at night. I was removed from the medicine and now I don't know if the nodules have shrunk or not. I see the ENT again in April. I never questioned anything he did, but out of the blue he told me that if I needed a second opinion, he could refer me to a specialist at UVA. Does this sound to you like his way of washing his hands of me because he's not sure what to do next?
Frankly speaking, I get very tired of playing doctor to myself. I'm just not as knowledgeable as the rest of you, and trying to figure it all out has added to my fatigue levels. It's winter and I'm sure SAD is contributing to my fatigue as well. I'm thinking of seeing the thyroid specialist at UVA, but I am reluctant to plunge into medications. Can you advise if surgical removal of the nodules might restore thyroid function, and how safe is thyroid surgery? Thank you so much folks. Mary
Hi Mary ! Personally, I can say that a lot of what I've learned has come from the mistakes, poor judgment, and lack of interest on the part of most doctors. Here in Taxachusetts, we have some of the finest hospitals in the world but, most doctors live with blinders on and without common sense. They're so cookie cutter and by the book that they can't get out of their own way. It's too bad and extremely frustrating. I wouldn't wait another day to get another opinion. Grab your records from that poor excuse of a doctor you have and run.After my thyroid diagnosis,the doctor told me to wait 4 stinkin' months before they would start me on replacement hormone because of the high level of hormones I had acquired from my thyroid going crazy. Two and a half weeks later I was begging my wife to shoot me because I was out of hormones, out of energy and out of my mind. They still refused to start me until I made a seen in the emergency room that my doctor was trying to kill me. My head felt like I had a spinal tap and repeatedly kept sitting up to see how bad it would make my head feel. Needless to say, I left there with hormones after a simple blood test determined I was on empty. Don't give up ! Stay in the fight ! Go to your family doctor and have them do a blood work-up on you tomorrow. Best of luck !
I always welcome second opinions. Thyroid nodules are usually benign but a small percentage are cancerous and it's a good idea to get them checked (thyroid cancer is very treatable and very slow-growing). Menopause is notorious for setting off thyroid problems, partly because of fluctuating estrogen levels which bind thyroid hormone.
Maybe you can try a different thyroid hormone. I think it's best to start with a fraction of what the dose says and work up very slowly to avoid reactions. Taking a full dose right off can make you feel like you're on speed!
The one thing I would NOT recommend is SSKI or potassium iodide drops. They made me terribly stiff because of the potassium and there are warnings on potassium iodide tablets related to MC.
I really like Mary Shamon's website at http://about.thyroid.com She has loads of good information about thyroid disease, hormone replacement, surgery, etc.
You will also find a lot of discussion here about thyroid - I believe many of us have perfectly normal thyroid tests, but our basal body temperatures are low, and we apparently might benefit from some replacement therapy. I have never done it, but I am considering discussing it with my PCP when I see him in April... meanwhile, I will do the temperature log each morning, so he has something to go by. I am just not really into taking medications, so it's something I have to weigh carefully - since I've been living like this for 58 years, I'm sort of used to it.......(LOL) lois
Thank you again, everyone, for all the good advice. I plan to seek a second opinion about my thyroid now!
Just for laughs...picture me lugging a three-person innertube up several flights of stairs at our nearby waterpark this weekend, then plummeting down the extreme water tube with my two granddaughters at breakneck speed. I actually did it more than once. I also went up and down, up and down the smaller slides with the youngest granddaughter all day. You get the picture!!
I was very tired and very sore on Monday and Tuesday, still fatigued on Wednesday, and just beginning to recover today. I'm thinking it's thyroid, but maybe this is just from being a crazy grandma!