I could really use any thoughts, advice, suggestions, inspirations, hunches or lightbulb moments....sorry this is a long one.
Still struggling with the leg thing - pain, aching, cramping, swelling. Not overweight, never have been, but my legs are getting bigger and it's not fat. At this point I'm not sure whether it's lymph, circulation, or both. It seems to be just my lower body, basically waist down. I even think my butt is retaining fluid. I can't function without compression socks now, and it feels like it's soon to be the pantyhose. If I go an hour or two in the morning without them, my lower legs swell noticeably and get very firm. For sure my sedentary typing job all these years has contributed, but I'm starting to wonder if there's a thyroid connection because I know people who are truly sedentary that don't have these issues. Still fishing more hair out of the tub and brush than I think I should be, thinner on top, but I don't have bona fide bald areas. Still tend toward coldness, esp. feet, and very occasionally the Reynaud's symptoms in my hands. Peeling, soft nails for the first time in a long time (might be iron, so I got a good Enzymatic Therapy iron supplement). I got some slant cushions and am doing that daily, and also our eliptical machine and/or rebounding & skin brushing.
My last blood test about 3 weeks ago showed still low thyroid (though I have to admit I don't know the details, which levels, etc.) and magnesium was still low despite weekly "Meyer's" vitamin cocktail IVs with extra mag, oral mag in various forms AND topical magnesium oil all over or at least on my legs about 5-6 days a week, though my levels were better than a few months ago. I can't seem to go more than a week between the IVs without the cramping coming back. I had some jumpy leg stuff for quite a few years, but the difficulty walking and severe cramping started early last September. The swelling seems worse, though the cramping is a little better if I keep up the IVs.
I asked Dr. B about increasing the Iodine to 100mg, he told me to stay on 50mg and increased my Naturethroid from 1/2 grain daily to 1/2 grain alternating with 1 grain each day. I'm trying to remember if all this started before or after iodine, though I know either the Iodine or the Naturethroid or both must be helping some because the thyroid enlargement reduced moderately after about 4 months. It's time for another ultrasound, but I haven't gotten around to it yet. Still taking the companion nutrients plus a few others he recommended. I thought I might have an absorption problem, though my gut is functioning better since a couple of good colonics, being very strictly off gluten, taking lots of probiotics and a really good aloe drink plus triphala. I was on Barefoot's LBB for a LOOOONG time, and then doing the Schulze products, but they started to feel like "too much" and my gas/bloating, sluggish bowel was actually worse.
I need a refresher - SSKI is iodide? Could there be an issue with the ratios of iodine/iodide in the Lugol's (which is the only form I'm taking), or has anyone heard of edema being a result of Hashimoto's/thyroid disorders, or maybe a "side effect" of natural thyroid hormone? Saw a vein guy, he didn't find any blocked vessels on ultrasound.
I'm stumped and starting to freak about a future in a scooter or something! Not funny, but really, I went from moderate hiking to barely being able to walk through a grocery store in a matter of weeks.
I've kind of lost track, but well over a year on the iodine, with a short break while I had that appendix perforation and recovery. (still have my appendix!) The massive amounts of antibiotics no doubt did some damage along with helping.
The things I'm taking pretty much without fail are Lugol's 50mg all at once in the AM, selenium, C, Vit. D liquid/oil, magnesium in various forms (lately I'm liking a liquid from a company that makes trace minerals), digestive enzymes, trace minerals, melatonin at night, and extra salt in my water and food because he said I was low in sodium. I haven't done so much the regular "salt pushes" recently because I thought I was past most of the bromide detox, though maybe I'm wrong because I never had any really major symptoms, just a few zits and maybe increased headaches for awhile. Less regularly - there are a lot of other supps I take when I remember, which might be 3-4 days a week if I don't find them in the pocket of my bathrobe at laundry time - ATP Co-factors, PABA, herbs I bought from Uny when I was trying to go the Schulze route- hawthorn, liver herbs, bilberry, gingko, a few others. Cod liver oil when I remember. I wonder if the IP program they do over on that forum might have worked for me... Iodine would not have been part of it, but I was a little overwhelmed with the protocols.
Just recently I added what I think is a good iron product (my testing a few months ago showed low iron), E, a sublingual B, a food-based cal/mag, and I want to explore the boron that ginagirl recommended as well as that food grade diatomaceous earth for the silica which I've heard is good. I'm probably forgetting something. Oh - aloe and triphala. My gut seems to like those, as well as probiotics. I take those regularly.
My diet is like a hundred times better than the average american, but it can get a bit monochromatic when I'm busy, I tend to not get enough variety, I'm sure. For a few years I was almost grain-free, but I was eating too much meat that way, then I tried raw vegan for awhile, which helped my chronic headaches a lot, but made me really cold, and my gut wasn't particularly happy on that, either. Recently I'm back to some non-gluten grains (mostly soaked and cooked, though for the first time in years I bought a box crispy rice cereal - childhood comfort food) and a mostly veg. diet with fresh, whole veggies and only berries as fruit (since that's what the colon hydrotherapist recommended as a more moderate, do-able candida diet). Some fish and chicken occasionally, and even the odd burger or buffalo since I figure the iron will help me. Virtually no dairy. I try to food combine properly for digestion. Always some raw every day, about 4 times a week a green smoothie in the AM with berries and some kind of veggie as the base, no fat with that. Use coconut or olive oil to cook with. Take hemp oil as a supplement when I have it. No sugar, no junk unless something sneaks into a sauce when I'm eating out - which I still do, but try to make careful choices.
I feel like it's time for a liver cleanse, I've done a lot of work on my liver, but I'm still looking yellow sometimes and I feel a little "toxic." I think I really fried it back when I was taking a lot of pharmaceuticals for headaches and didn't know better. I know it's supposed to be able to regenerate, but my liver/GB seem to be kind of a constant problem, though I don't look truly jaundiced anymore. Those Hulda Clark flushes were a lifesaver for me.
So that's my story, sad but true - lol! I try to remind myself I could be much, much worse off. Watching a documentary on someone with elaphantitis or something puts things in perspective.
Without totals of all the magnesium and calcium you're getting, it's hard to know for sure. However -- if I was getting all the magnesium that is implied in your description of iv's and supplements and massage, I'd be a walking water blimp. I'd be swollen from the waist down. Magnesium relaxes, calcium tones. I know the iodine docs push magnesium over calcium, but that does not work individually for me. I still need twice as much calcium as magnesium to move fluid around my body. You can rebound all you want, but if your blood vessels are flaccid, that fluid is still going to settle in your lower limbs once you stop. Just my opinion. But I do get annoyed at the docs "one note" insistence of magnesium over calcium.
That is a good idea, thanks!! I hadn't noticed any particular "extra" swelling when I get the IV mag, and I wasn't supping with extra calcium because on the blood test, anyway, my levels were fine, but maybe this a growing, accumulating imbalance. I'll have to pay closer attention. Come to think of it, when I first started having the cramping, I didn't have the swelling and that weird, heavy, weakness and cold feeling in my lower legs and feet. I know I've read that calcium is supposed to be necessary with magnesium for proper absorption or something, but I've read different opinions about the ratios. Then with everything I've read about "bad calcium," I wasn't sure WHAT to do.
Does calcium tone the blood vessels? Do you recommend a good source of calcium I should be taking separately that would be well absorbed? I've always taken cal/mag supplements, I've tried various kinds, but it would seem they weren't doing their job, or I wasn't taking enough, or in the right ratio.
Any ideas about why the cramping starts coming back if I wait longer than about 10 days to go for the next IV and my levels were still low after about 6-8 weeks of major supplementation? Because there's not enough cal with the mag? I have also heard that it's a hard mineral to absorb and hold.
In all this I'm wondering, too, if I'm just in denial that this could be largely a result of not paying enough attention to getting more activity throughout my long work days, and it could have been prevented. Humans aren't designed for the level of "power sitting" I've been doing on a daily basis for the last 15 years, and I probably needed to be making triple the effort that most people do to keep active and do something to really keep the blood and lymph moving in my legs. My husband is just about beside himself, since this is pretty much what he was afraid of all the years he's been after me to make sure I never miss a day of vigorous exercise no matter what. I thought he was just being controlling and I didn't like him the "exercise police." I wish now I'd taken less work and been more "law-abiding..."
Anja, I have had wonderful results with lymph circulation and swelling, from using a vibration training machine. A lot of physiotherapy practices have them now, as well as many fitness centres. It might be something to look into.
I have one at home, and 10 minutes a day is all I need, I have had no swelling since using it, (I had a lot of swelling in my knee and ankle due to a knee injury), and my circulation is tip top now.
thanks, I haven't heard of one of those, but I'll have to look it up. My husband has a chi machine knock-off which he has loaned out to a client right now, and I was wondering if that might help.
Now that I've read Wombat's post about heart issues as a result of low thyroid possibly causing the edema, I'm hoping I can get to the root cause. I don't know if I'm happy to have possibly found it, or bummed out that it sounds like it could be kind of serious!
I don't think that the root cause of your problem is being properly addressed, Anja. (and you can tell Dr. Brownstein that a rank amateur said so:)
You have many signs of hypo, and I don't think that the protocol Dr. B has you on is the correct one. He needs to adjust your naturethyroid(UP, IMO). Yes there are ways to stimulate the thyroid "naturally", herbs and such,(or, of course, UN-naturally, with high doses of iodine) but I think that when someone is having the symptoms that you are it's a critical situation.
Yes, I believe that Uny's protocol would benefit you greatly, I think you need it. I don't think that you need it right this minute though. Right this minute I think that you need more glandular, and less of everything else that you're taking. less, or none. aaahhh, wouldn't that be nice? Good lord, you've got a list of supplements, I dozed off reading 'em:))
Then do Uny's protocol.
You have a history of constipation~
~yellow tinge to the skin~ the body can only convert beta carotene to vitamin A in the presence of thyroid hormone, that's why cod-liver oil is a good idea for those with compromised thyroid function- no conversion necessary.
Your liver probably needs some work as well, the liver also has to process all the supplements you're taking, ya know? But the yellow is likely due to beta-carotene, not jaundice.
~you're losing hair and your nails are brittle. If that ain't hypo I don't know what is.
~the edema is indicative of impaired cardiovascular function due to hypothyroidism.
BTW, you HAVE to listen to the Dr Mark Starr interview here, 2 parts, uploaded 3-18-2010. You MUST!!! :)
"Hypothyroidism is characterized by a decrease in oxygen and substrate utilization by all the major organ systems of the body. As a result, the demands for cardiac output decrease; in addition, hypothyroidism directly alters cardiac function. This card will review the cardiovascular manifestations of hypothyroidism. Other symptoms of this disorder are discussed separately. (See "Clinical manifestations of hypothyroidism").
PATHOPHYSIOLOGY — The major cardiovascular changes that occur in hypothyroidism include a decrease in cardiac contractility and mass, a reduction in heart rate, and an increase in peripheral vascular resistance.
Cardiac contractility — All measures of left ventricular performance are impaired in both short- and long-term hypothyroidism, leading to a reduction in cardiac output [1,2,3,4]. There is also a decrease in the rate of ventricular diastolic relaxation; as a result, compliance and diastolic filling are impaired.
The reduced ventricular performance is probably multifactorial. Possible mechanisms include increases in afterload and changes in expression of the genes for myocardial calcium regulatory proteins [5,6]. Several enzymes involved in regulating calcium fluxes in the heart are controlled by thyroid hormone, including the calcium-dependent adenosine triphosphatase and phospholamban . Hypothyroidism-dependent decreases in the expression and activity of these enzymes could potentially impair systolic performance and diastolic relaxation.
Vascular resistance — Thyroid hormone relaxes vascular smooth muscle cells, thereby reducing peripheral vascular resistance. Conversely, hypothyroidism causes contraction of these cells , increasing peripheral vascular resistance. This change results in reductions in cardiac output (in part because the heart cannot increase contractility to compensate) and tissue perfusion. Tissue oxygen utilization is also decreased; thus, arteriovenous (A-V) oxygen extraction is not different from that in normal subjects .
CLINICAL MANIFESTATIONS — Symptoms and signs of cardiovascular dysfunction are not common or prominent in patients with hypothyroidism. Those that do occur include (show table 1) :
• Exertional dyspnea and exercise intolerance, although these symptoms are probably due to decreased activity or muscle dysfunction in most cases
• Cardiac dysfunction, with poor contractility, dilatation or pericardial effusion
Edema — Periorbital edema and nonpitting edema of the hands and feet are characteristic features of hypothyroidism, albeit rare today. Nonpitting edema is due to interstitial accumulation of glycosaminoglycans (hyaluronic acid and chondroitin sulfate), with associated water retention . Some patients have pitting edema of the feet and legs, probably secondary to an increase in albumin content of the interstitial fluid .
• Dr. Hotze's Blog
• How Does Hypothyroidism Cause Heart Disease?
• March 08, 2010
• We have talked a lot about the relationship between hypothyroidism and heart disease, but what we haven’t mentioned is how they are related. This post is for the inquisitive mind. So are you ready to go a little deeper?
• How does hypothyroidism cause heart disease?
• It appears that the primary reason behind the relationship between heart disease and hypothyroidism lies in mucin deposition and inflammation.
• Now everyone knows what mucin deposition is, right?
• OK, most likely not. So let’s learn a little about mucin.
• Mucin is a glue-like substance that is normally found in our tissues. However, here’s the clincher: the abnormal accumulation of mucin in our connective tissues is unique to hypothyroidism.
• Mucin latches onto water causing swelling of the tissues and is responsible for the enlarged features of individuals with hypothyroidism. Interestingly enough, the abnormal accumulation of mucin associated with hypothyroidism is the culprit behind poor conduction of nerve impulses, menstrual difficulties, connective tissue diseases, such as rheumatoid arthritis, and the hoarseness associated with hypothyroidism.
• Basically, mucin clogs these systems up by infiltrating the tissues.
• This is how hypothyroidism can cause heart disease. Mucin infiltrates the heart muscle, effectively weakening it and making it unable to pump blood effectively. This is also known as congestive heart failure. In the United States, 5.7 million Americans suffer from CHF and nearly 300,000 die each year from congestive heart failure.
• Additional difficulties in the heart arise with the accumulation of mucin, such as atrial fibrillation, palpitations, and an increase or decrease in heart rate.
• According to reports dating as far back as 1918, an enlarged heart is shown to return to its normal size with the addition of desiccated thyroid.
• Researchers have also discovered that mucin can even develop in children who have insufficient thyroid function. They found that as long as thyroid is administered, the tissue would return to normal. However, if thyroid therapy was stopped, mucin rose rapidly. When thyroid therapy began again, the mucin content returned to normal.
• So, now that you are familiar with mucin – what can you do with this information besides wowing others with your impressive knowledge? Make sure you’re keeping it in check by looking at the symptoms of hypothyroidism and treating it accordingly with desiccated thyroid.
• So the next time someone asks you, “How does hypothyroidism cause heart disease”, you can answer: have you ever heard of mucin …?
~that's all for now:) Listen to the Dr. Starr stuff. You MUST.
also, I'm guessing that the pain that you are experiencing is indicative of lack of oxygen to the tissues due to sluggish circulation... caused by ...hypothyroid and of course your sedentary lifestyle...
thanks a bunch for the info! I would not have even considered this. I'm scared now... but I'll ask Dr. B about it.
I know I had some tests in the hospital last November when I was in for the appendix perforation, one might have been an EKG, I'm not sure, but no one has suggested, including the vascular specialist I saw about my legs, that there might be a heart issue or that I should get more tests. There is certainly a strong family history of heart problems, though it wouldn't surprise me if we're all hypo and that's the reason.
I've never had high BP, and on occasion it's actually been a little too low. This is def. worth looking into, though. I do have cod liver oil in the fridge and I've been forgetting to take it, so I'll start back on that daily for sure.
Dr. B did increase my Naturethroid by an extra 1/2 grain every other day, but maybe that's not enough. Interestingly, and I don't know if this has anything to do with it, but yesterday my libido sort of returned all in a rush at about the level of a 16 year old boy. I was pretty much climbing the walls until my husband got home, and that aspect of myself has been asleep most of the time for a number of years. I actually thought it was just about gone for good. I wondered if it had anything to do with increasing the Naturethroid.
It would be incredible if all these symptoms might actually be reversible if it's just a matter of getting the thyroid under better control. Yesterday I made it through a long day with the compression socks on, but legs were aching by the evening. I see a lot of blue on the bottoms of my feet, it pools there I guess. I wish I could quit my job, but at this point I don't have a lot of options.
I'm still overwhelmed by Uny's protocol, I'm sort of not good with absolutes, and I have to say I think some of it is just too harsh for me. My gut is finally flattening out, and I have a ton less gas and abdominal pain since getting off the Schulze bowel products and backing off on the cayenne. AND I'm taking probiotics, which they recommend against. I'm much more regular, now, no pain, my appendix area feels better, and things are almost "normal" for the first time in many years. I still don't believe in the "one cure cures all" concept, though clearly many people get better on that protocol, and I'm sure there are parts of it that would really help me, which I'll probably do one of these days. I wonder sometimes how much of the improvements people get on it are because of what they stop doing vs. what they start doing, but there's no way to really know for sure, and you don't hear about the failures, only the success stories.
Well, time for breakfast and some cod liver oil! Thanks again so much for the input.
I'm tempted to just play with the Naturethroid dose myself, but I think I'd better talk to him first. You mentioned taking less of some of the supps - are you referring to any in particular? I've always been skeptical about vitamins, but I usually do better on them than off them. And being dependent on weekly vitamin cocktail IVs with extra mag is ridiculous, I've got to find a better alternative to that for sure.
Sometimes I wonder if people end up taking too many things at once and then it is hard to figure out what is what. It probably also congests the liver where conversion from T4 to T3 takes place. One thing that helped me when I couldn't figure out a problem was stop most everything except the crucials (ie. thyroid meds etc.) and then reintroduce supplements one at a time. I know for myself I am very sensitive to herbs and there are a lot of herbs that actually interfere with thyroid function. I would double check on the ones you have been taking. I agree with the magnesium. I got very hypo when taking too much 800 mg or more a day. When I sat down to tally all my sources of dietary calcium and magnesium my balance was totally skewed. Ideally, from most articles I have read it is best to have a 2 to 1 calcium to magnesium ratio. I have also read that hypos actually need more calcium than magnesium (I will try to find the article I read about this). Also, I think fluid retention has a lot to do with potassium sodium imbalance. For instance, when I was salt loading I started to get fluid retention so I had to add potassium chloride to the mix. Are you getting enough potassium from fruits and vegetables? Again, I believe it's about having an appropriate ratio. Eating a balanced diet rather than supplement loading is probably the best way to do this. Also, have you had cortisol levels tested? High cortisol can contribute to edema. When I was on hydrocortisone, I knew I was taking too much when my legs started to swell up.
you know, it's so frustrating because I've done that, gone off all supplements, and I don't typically do well that way, either. My diet is very good, very clean, and I pretty much live on organic fruits and veggies. Which is why I was surprised my potassium was low, I'm taking potassium bicarb 3 x day right now. I was also supposedly low in sodium, despite not restricting salt in my diet, so I've increased that (celtic Sea Salt ), but I wouldn't doubt my electrolyte balances are still off. On my blood tests, mag was very low but calcium was fine, which I assume is why they're pushing so much extra mag, but maybe it doesn't work that way when it comes to assimilation. It's like I'm so depleted that it required a more aggressive approach than just dietary/herbal, and I'm wondering now if the thyroid is still at the root of those nutritional deficiencies. Like it's the mother of this whole decline. My husband is convinced I've done this to myself because I don't meditate every day and spend a lot of time working on my body the way he does. He's pretty robust and I think it's a little like comparing apples & oranges, but he may have a point, at least to the extent that I've allowed stress and overwork to affect me physically. Long term stress could be a big part of the reason my thyroid quit working properly. I told him it might help if he'd do a load of laundry occasionally - lol!
well, see there ya go. You're seeing Dr. B but he sends you to someone else about your legs. That's just typical, people are "parts" in western medicine, even to the enlightened io-docs.
If you're going to hand him a post written by an anonymous internet poster, please tell him that I do have the utmost respect for him, and tell him to tell Guy Abrahams that I have a super-huge crush on him:)
I've learned a lot from those guys and would probably be on my way to Breast Cancer if not for them.
You might actually have to find a good endocrinologist, Anja.
I have no idea if what I am suggesting is true or not, I'm just putting together the pieces. If it IS true, though, I think you need another doctor(don't tell Dr. B I sad that, ok?). He might have a case of tunnel vision. That's common...
actually he didn't send me to the vein guy, I went myself because I felt like I had to rule out blood clots, but he might have, anyway. He didn't think it was clots, and he was right. I've done a LOT of more holistic approaches over the years, and I didn't start cracking this nut until I went back to Dr. B and finally got some testing and evaluation by him, so I'm not giving up on him yet. I think I just have to push him a little, or not be satisfied to wait 4 months or more without my symptoms improving to explore the next option in trying to get to the bottom of it. I'm rethinking giving him the posting you wrote, actually, since I had this long note about what's been going on with my symptoms and I am doubting he'll take the time to read all that. I'd still rather work with him than an endocrinologist, but I'll switch if I have to. I'm due for another thyroid ultrasound, at least he likes to monitor that every six months and I'm past my "due date," so I think I'll set that up and then when he calls with the report, I'll mention reading about the cardio connection and ask about increasing the Naturethroid and/or decreasing the iodine, and really make sure he understands how debilitating the leg thing has been. I should point out that when I say they're bigger and swelling, it's not grotesque or anything, like if you didn't know me you might not think there was anything wrong, but I can see it and feel it (they feel thicker and firmer), and there is this odd sensation and weakness in the nerves and muscles or something, they just don't feel right. I'm sure some of it's lymphatic, but I still think it's mainly circulatory.
Anyway, I really appreciate the thoughts and suggestions. I've definitely been making lifestyle changes to better compensate for all this sitting, but I'm worried it's come too late.
also dealing with huge legs. Thyroidectomy and synthroid 200mcg. Especially in the last year, now 10 years post surgery it is getting more and more difficult. Doc is completely TSH oriented. Not water edema. Was told by PA"you just have big legs"
If you have any guidance, please.
at the end of my Rope. Katie's mom
Hypothyroid and edema go hand in hand. It slows down metabolism and the lymphatic system. I have been going through the same symptoms you have. I was diagnosed with Hyperthyroid for the past 20 years until just recently they discovered I do both. I think they call it viral thyroiditis. Example: in December I was hyperthyroid and in February hypothyroid. The doctor doesn't want to medicate me because of the hyper/hypo swings.
I am going for more blood tests and will be seeing him in a few weeks and this time I want to go through the xrays and stuff because I am experiencing thyroid pain at moments, I have a goiter (swollen thyroid).
I hate when the doctors say exercise should help... really? I too have started experiencing difficulty walking sometimes.
I will keep you posted and would very much like you to keep me posted too.
Talk to you soon.