I would greatly appreciate any suggestions on how to deal with this situation because I've pretty much had it with doctors. I am now on my 4th endocrinologist from prior to my full thyroidectomy (July 2015) till now (Dec. 2016). Three have done me harm in one way or another, and this new one is reluctant to tamper with the meds. Also, I'm in the U.S. so suggestions on good doctors, OTC meds, etc. probably won't pertain to me. I'm seeking knowledge and protocol advice as far as meds are concerned, hoping someone here can help.
I'm 59 years old, female, have had hypothyroidism for a good 40+ years, though it wasn't addressed till I was in my 30s. Not until the mid 90s was I prescribed meds. I've been taking Armour Thyroid since then. Only recently, due to a lot of nonsense going on because of poor guidance by doctors, I was pushed to look through all my medical records (that I have) and try to learn more about the details of test results. I never really understood the T3, T4, TSH or anything else, and always trusted the doctors to know what they were doing as far as what levels I was at, etc. Anyway, I still don't know it as well as I'd like, but do understand more. What I noticed, and have learned, is that all along, while taking Armour (many years ago, 30mg, most years 60mg, now 90mg post-surgery) my T3 has always been on the high end of "normal," the T4 always VERY low end and the TSH has been low, especially now. I learned low T4 is expected with Armour, due to a known "across the board" mal-absorption problem. Adjusting the Armour has never changed these discrepancies. I want to try to take meds that allow for adjustment in the T4 dosage. Due to my being "sensitive" in many ways this new doctor doesn't want to change my meds to try this. Armour Thyroid CAN'T bring up my T4.
Anyway, is there a list of other meds and which combos are often used to adjust T3 and T4 individually? Are there some meds that cause osteopenia more so than others (I've become osteopenic, pretty bad in a few places)? I was never told that taking thyroid meds can cause osteopenia/osteoporosis so never took extra supplementation and my body is showing it.
Any help or info you can give me, I'd really appreciate. I know I'll also be posting about parathyroid/calcium/D issues, too, but just this at the moment.
Thank you!
Donna
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When you are on any form of T3 then this can happen though how you convince anyone I don't know! But you mention your bones and I would address that first by starting with getting D3 tested. It sounds as though it will be very low so get it tested and post results and then we can better advise. At the same time test for Folate and B12. We are often low in those as well and optimum levels are needed for thyroid health. When these are optimal then things should start to improve and you then need to keep N eye on your FT3 as it may rise so you could well have to lower your dose and then see on your next test if that has done anything g to your FT4 reading.
If your D3 is low you will. Red a booster dose to bring it up and then a maintenance dose to keep it there. Along side the D3 you need to take K2. This will take calcium out of your blood and put it in the bones and teeth where you need it. It is also good for dental health and your heart but you must not be on a blood thinner if you take K2.
I realise that you said you wanted to sort thyroid first but sort out what it needs first and then it will. Exeaslier to deal with.
There is loads of info on the Thyroid UK site so please have a look and I'm think you will find other things you didn't know about.
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Donna, I'm also in US. Also hypo with Hashimoto's for 25 years. Why do you want to raise your T4? Are you having uncomfortable symptoms? If you are getting enough T3 you may not need to worry about the T4. T4 is only beneficial as it is converted to T3. So adequate T3 is what we need.
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I'm also in the US. I haven't found any help from endocrinologists, but have gotten good help from functional medicine doctors, who can be MDs, NDs, DCs, DOs, or ARNPs, so perhaps you can find one to help you.
I can't take NDT due to allergens in them, but have been on either T3 only or T4 for almost 5 years and done well.
On T3, TSH is typically suppressed, and T3 should be in the top third to quarter of the range. T3 may need to be in divided doses (2-3 times a day) as it stays in your system a shorter time, while T4 can help smooth out the peaks and valleys.
For bone health, weight-loss training is important. Start light and work up gradually. Taking calcium, magnesium, vitamins K2 and D3, along with trace minerals like boron and strontium can be helpful. Garden of Life Plant Based Calcium has a good blend, and I also take extra K2 and vitamin D to help the calcium get into my bones instead of my arteries. Getting your vitamin D level up to 50-80 is a good goal.
You say you split your doses of T3. Granted it is in your system for a shorter time but this is an excerpts from a doctor who used T3 himself and also for his resistant patients.
Question: I’m a physician who has just begun using T3 in my practice. One thing I’m concerned about is the short half-life of T3. Shouldn’t patients divide their daily dose up and take part of it at least twice each day, or instead use sustained-release T3? It seems that this would allow the effects of T3 to continue through the day rather than stop midway or in the evening?.............................
Excerpt from answer to above:
As a result, a single dose of T3 will be long gone from the patient's system before he or she experiences most of the benefits of that dose—a molecular and metabolic yield that may smoothly spread out over one to three days. The "rocky road" ( August 7, 2001
I'm well monitored by my doctor. And I'm allergic to corn, gluten, and milk, so it limits what he can prescribe me.
I was up as high as 50mcg T3 at 6:30 am and at 1:30pm, which worked fine. Currently, I take 25mcg each of T3 and T4 in the morning and 25mcg T3 in the afternoon. I haven't really noticed much difference.
You say that you were on 50mcg of T3 twice daily equal to around 400mcg and 25mcg T4 and you felt fine. Now your combined dose is 50mcg T3 plus 25mcg of T4 so your daily dose is now equal to around 225mcg T4, so that is quite a big daily reduction of 175mcg of thyroid hormones.
In the past 3 years, I have gone through stage 3 cancer and successful treatment, including a radical hysterectomy, and the subsequent development and treatment of chronic fatigue syndrome.
So, yes, my entire hormonal status has varied dramatically throughout this period. I was diagnosed with Hashimotos and celiac prior to all of this and already on T3.
What I meant by feeling OK was not feeling like I was running out of T3, even with very different dosages and timing, as my doctor guided me well.
The key is to be aware of symptoms, and ideally be working with a doctor who listens, runs good labs, and adjusts as the body changes over time.
Ah, well, the optimum dose depends on a lot of things, like what stresses are being placed on the body, how well the pituitary and adrenals are working and nutritional status.
I've also found that adjusting pregnenolone, progesterone, DHEA, and testosterone can impact symptoms dramatically.
I thought I had a simple thyroid and gluten problem 5 years ago, and multiple doctors missed the faint clues of my cancer.
From what I've learned, these hormonal systems dont just go awry in a vacuum. It pays to look at what else is going on in the body and address that, too, in addition to the presenting thyroid problem, and then adjust thyroid as needed as other problems are addressed.
Thank you for sharing the chart. I'm afraid I spend most of my time in the left column. TSH happily suppressed due to T3 treatment, but certainly not hyperthyroid!! The comment about not treating until TSH is over 10 is very sad....the 2.7 (or 2.5) number makes more sense, though symptoms should dictate treatment needs above pure labs.
Optimum us just another way of saying 'whatever dose makes us well' with relief of symptoms. Unfortunately doctors seem to only take the TSH into account and disregard symptoms which they are unaware of anyway.
You are correct about symptoms being above lab test. doctors are poorly trained.
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The low FT4 when taking any form of T3, has nothing to do with 'mal-absorption'. It's low because the body only hangs on to what it needs. And, as T4 is a storage hormone which has to be converted into T3, when you are taking T3, it doesn't need as much. So, it either excretes it, or converts it into rT3.
And that's why you don't want to knock yourself out trying to raise the FT4. If you do succeed, you will just end up with excess rT3, because the body doesn't like wasting all that excess T4 - the rT3 is later converted into T2, but, in the meantime, could block your T3 receptors, so that the FT3 cannot enter the cells. So, your endos are right not to try and help you raise your FT4 - even if they probably don't know why! lol
I very much doubt you need calcium for your bones. Calcium is just one of the elements of good bones, more important are vit D3 and magnesium. Taking vit D3 will increase your absorption of calcium from food - which is why you need to take vit K2 MK7 with it. It is very rare to be calcium deficient in the developed world, but if you think you do need calcium supplements, do get tested first. Calcium supplements are not a good thing to take - even when you are low on calcium. It's far better to concentrate on eating calcium-rich foods. But, the odds are, you aren't calcium deficient, anyway. So, do get tested.
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Being in the US you may not be aware that you can pay for blood tests without a doctor being involved in the process at all. (There are a few states which won't allow this but most do.)
If you decide to do some testing for yourself you should post the results here and ask for feedback. We can help with interpretation of the most common tests for thyroid and nutrients.
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The blood tests used to test thyroid hormones were invented along with Synthroid(Levothyroxine). Before that we were given NDT upon clinical symptoms alone until were were symptom free. No blood tests at all.
Synthroid as you is T4 only. Armour contains T4, T3, T2, T1 and calcitonoin (good for bones). So when we have a blood test that contains all of the hormones it cannot correlate to being on T4 alone. I shall give you a link which may be helpful when taking any of the NDTs.
Your results sound exactly what you would expect when taking meds containing T3. Often Ft4 and TSH are below range and FT3 near the top of the range. That's what you want.
For bones, you need boron and magnesium, plus vit D3 and K2 - and weight bearing exercise. It is usual for bones to thin with age, but "normal" has been redefined, as far as I can tell, so that women can have biophosphonates pushed on them, when 30 years ago no one would have bothered.
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Kind of a simplified explanation but ... your TSH should be low. You are supplementing thyroid hormone when you take Armour. Therefore your body will not think you need more and won't release the message to give you more. The Armour is a natural Dessicated thyroid supplement from pigs thyroids. It contains both T4 and T3. Normally our bodies produce T4 and then convert the T4 to T3 which is the usable form of hormone for metabolism. Your T3 may be high on your test because 1) you are supplementing,2) you took your medication 24 hours prior to your blood work, 3)you are taking too much Armour. Don't worry about your TSH test. It is a useless test. They just don't have a better one and your numbers are appropriate to your meds. How do you feel? What symptoms remain? There is a bigger picture than lab work results. Most doctors don't really understand the intricacies of hypothyroidism testing and treatment.
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To remove TBG (Thyroid Binding Globulin) from the equation, you should be using the FT3 and FT4 tests. (It isn't clear what type of testing you have been using.) To avoid osteopenia/osteoporosis and other side-effects, from a thyroid standpoint, you need to make sure your FT3 is not above range. If you're not on a comprehensive supplement program, then you need to get started on that; supplementing D3 and K2 is important to avoid osteoporosis. I use the DFH product "Vitamin D Supreme" to get a sizeable dose of D & K in one cap. Also, applying pressure to your bones via an exercise program will help re-mineralization.
The issue with Armour is that it contains T3:T4 in a ratio of 1:4, characteristic of pig thyroid. (Mal-absorption might be a problem, but I doubt that.) The ratio naturally present in the healthy human is more on the order of 1:12. You need to change your Armour dosage to a point where your FT3 is well within range. Then, add in T4 (I use T4 as Levoxyl cuz it is guaranteed GF) slowly to see how you tolerate a greater percentage of T4 in the mix. Keep in mind that there are nutritional deficiencies that will affect how you convert T4->T3; among them, iron and selenium. If you are nutritionally deficient, then adding in T4 could cause undesirable symptoms like anxiety.
Ultimately, you want to end up with FT4 approx. 50% up in range, and FT3 approx. 75% up in range. Once everything is in range, look to other causes for osteopenia. Don't listen to ignorant docs who say that everyone who uses T3 is going to have osteoporosis and heart attacks.
BTW you said nothing about Hashimoto's. Have you ever had your TPO and TG (anti-thyroid) antibodies tested? If you are harboring autoimmunity, you can't really be well.
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I am confused. A very low TSH indicates an overactive thyroid. Normally then t4 would be high and t3 highish. Try another endo would be a good idea. One on recommendation.
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I don't know if everyone will see this, but first a BIG "Thank You" to all of you. You people are amazing I am working on putting more info together in a comprehensive way so the issues each of you brought up is addressed. I was going to split it up into different posts, but they will be together here. I'm hoping to finish by tomorrow. Thanks again!
OK, here goes nothin'---I really hope this pastes here well!...
Wow, thank you, all!!! I am overwhelmed and thrilled to have such caring, informative responses Since I’m new to this forum (joined a while back, but haven’t directly participated really), I’m unfamiliar with how I should respond because I’m guessing members get notified only if there’s a direct reply? I see now that I could’ve saved many of you some time/thought if I HAD been more detailed and I’m sorry for my ignorance which caused that oversight. I didn’t think you’d want/need to know or spend that kind of time addressing my problem :-\ I hope you don’t mind the length of this now. I thought it best to answer with one comment since so many things brought up in your comments overlap. I’m also thinking I should probably paste a lot of this in my profile. I hope this works out well. Anyone who actually takes the time out to read this—bless you! You are very kind and generous
I have made SUB-HEADINGS to make it easier for anyone to pick and choose what to read. I hope that helps. I also hope my formatting holds when I paste this from Word into the site, though I doubt it will.
FIRST: because my “thyroid story” is long and full of twists and turns, I didn’t want to overwhelm or become tedious/arduous in one post so only addressed the one problem first about the T3 and T4, figuring I’d post the rest in separate forum threads, but since so much was brought up here which I need to respond to and make more clear, I’ll continue here…
Also, I’m going to make the PARATHYROID / CALCIUM / VITAMIN D issues a separate forum thread here:
BRIEF HISTORY (I’ll spare you the details): My amalgam fillings (first as a young child, then as a teen) made me mercury toxic. This is what I believe started the health ball slowly rolling downhill with my thyroid and chronic conditions from childhood on. This (and possibly other metals, minerals, etc.) contributed to my gradual “brain fog” issues which became chronic by the time I was 20. My fibromyalgia symptoms kicked in in my early 20s. My chemical sensitivities reared up in an obvious way when I was about 30 (1987). It was about then that it was brought to my attention that all the symptoms I thought were “just me ‘cause I didn’t eat/sleep well” could be an actual health issue. It’s been a very long, winding, bad road with doctors (many false diagnoses), always missing or neglecting important points and prescribing treatments which often made me worse and generally, due to all these things, I’m in relatively bad shape now, my brain fog (so severe, it is bordering dementia) and osteopenia being my most urgent concerns at the moment.
MISC. PERTINENT INFO ADDRESSED IN YOUR COMMENTS:
THYROID:
Though I was told I had a sluggish thyroid when I was 20, my MD (Dr. B.) didn’t explain anything about it and I believe prescribed SYNTHROID for a month, never telling me I had to take it for the rest of my life, and never following up on it in a “treatment” way. My recent delving into whatever records I have here shows this about my T4 (blood tests, no other thyroid levels were noted):
• April 1978 T4 = 5.3 (4.5-12.5) when I was 20
• Oct. 1979 T4 = 5.1 (4.5-12.5) 1 ½ years later
• July 1984 T4 = 6.1 (5.5-16.0) 4 ½ years later
• Aug. 1984 T4 = 11.5 (5.5-16.0) (this was prob. after the 1 month I took synthroid)
I was retested when I got pregnant only 5 months later (Dr. I.), again not being explained that I had to take the meds for the rest of my life (I was clueless and went by what doctors said, which was spare). These are the results from the pre-med blood test Jan. 1985 showing within range, but low, the TSH being mid-range:
• T3 = 26.9 (23.0-34.0)
• T4 = 5.20 (4.50-12.5)
• T4,free = 1.41 (1.0-4.30)
• TSH = 3.90 (.00-6.70)
In May 1994 (9 ½ years later), not having taken thyroid meds since my pregnancy, I have these results which MUST have been when I first took a med again (Dr. K.). I’m trying to find out if that doctor has record of med/dosage (I believe it was always Armour through him), but these were the results (though no TSH). To me, this looks on target!:
• T3 = 1.02 (.80-1.20)
• T4 = 9.6 (4.5-12.5)
• Free T4 = 9.8 (4.0-12.3)
Different doctor (Dr. N.), first prescribing 30mg ARMOUR, 5mg CORTEF:
Urine:
June 1997 T3 = 906 (1530-2300)
T4 = 450 (1925-3000)
Blood:
Dec. 1998 free T3 = 6.0 (2.3-4.2)
TSH = .08 (0.49-4.67)
June 1999 free T3 = 6.2 (2.1-3.9)
TSH = .02 (0.40-4.20)
Then, inexplicably, still on 30mg ARMOUR, 5mg CORTEF, the T3 fell and TSH rose (though still too low). Then 1 ½ years later, still same dose and look at the numbers in 2001:
Blood:
Sept 1999 free T3 = 2.93 (2.1-3.9)
TSH = .34 (0.40-4.20)
What seems apparent to me is that when my T3 is too high, the TSH is too low even when the T4 is low (the TSH kicked in when all levels were lower), and I’ve been told that when the TSH is too suppressed, that is also bad for the bones. The Armour has consistently kept my T3 too high, my T4 low and the TSH too low. I can’t help but believe this is a big, contributing factor to my accelerated osteopenia. It also seems to me that my TSH/pituitary was working fine when I wasn’t on meds, but medication, regardless of what’s going on with the T3 and T4, suppresses it and is consistently too low. How Dr. K, for so many years, said my numbers were good on 60mg Armour is beyond me. My T3 was always high and my TSH was always low. My numbers weren’t always perfect on 30mg, but they seemed better overall than higher.
Also, I “thought” I read on the armourthyroid.com that there was an expected MALABSORPTION issue with the T4 with Armour. I wasn’t able to find it when I looked now, not sure why. It was definitely stated elsewhere, but I could’ve sworn it was on their site.
I have also gone to Dr. John C. Lowe's site and it looks so promising. I was very sad and disappointed to learn that he's passed away I am hoping that I can find a doctor that can actually help me. It sounded like he was the right kind!
T4 to T3
teenarocks mentioned that the T4 level being low doesn’t matter. I was never told either way, actually. What I do know is that when one of the endos decided to experiment shortly after my thyroidectomy, by giving me Tirosint (which is only T4) instead of Armour, I felt HORRIBLE almost right away, but still had to wait however many weeks (6?) for blood tests. My numbers were INSANE so I was told my body doesn’t convert the T4 into T3. I didn’t have this kind of reaction 40 years ago when I was briefly given Synthroid so I don’t know if it’s because I was younger and not as ill as now, or if it’s due to now having NO thyroid.
Learner1 mentioned taking ONLY T3. It’s never been suggested to me and this doctor is reluctant to try anything new. If I don’t try, I will never know! *sigh*
I asked if I could also take T4 in addition to Armour, thinking it would bump up the T4 (though in reading your comments here, I’m thinking that’s not the problem). My new endo also said she can’t give T4 along with the Armour ‘cause they would come after her—it’s a big no-no.
According to Eddie83: “Ultimately, you want to end up with FT4 approx. 50% up in range, and FT3 approx. 75% up in range.” My T4 is always well below 50% and T3 is always well above 75% :-\ That’s why it doesn’t seem right to me. And my TSH is practically non-existent.
TESTS:
I’m not aware of TPO and TG, and have no idea if they had been tested at all through these years. I can ask though. That may have been part of one of my many tests.
NDT
- I’m not familiar with this, though I’m pretty sure my foggy brain has heard of it before. I looked up its meaning and it’s Neuro treatment? I didn’t know you take something in which allergies could be a problem. Don’t know why I thought it was more a kinetic sort of thing lol I must be remembering something VERY wrong.
SUPPLEMENTS/MEDS:
I have blood work regularly (too often for my liking, but it’s very necessary lately), and most things look good. About 2 years ago, one of my docs (FUNCTIONAL MEDICINE) had me add a quality:
• B-COMPLEX.
• CALCIUM/VIT. D/MAGNESIUM my intake has been a NIGHTMARE for the past few months. I’ll explain that under “PARATHYROID.”
• VIT. D – for a couple of years I was prescribed very high doses by one of my doctors (50,000 IU 2xweek) and I actually FELT a positive difference back then. I had to stop after thyroid surgery.
I would love to take more D, but as of now, I can’t
• K-2 – just recently I read about this, so ordered from Douglas Laboratories and began taking it a couple of weeks ago.
• I have also taken high-quality supplements for a good 10 years now that helped me with fibro pain and more general health. They are made by Mannatech and I know, from personal experience, trial and error, that they help me a lot. I can’t afford any of it, so still take it, but not in the dosage I need except the multi-vitamins. I take those in full.
BIO-IDENTICAL HORMONES:
Unfortunately, for me, in 2012 I finally went to one longtime doc about taking these because my chronic brain fog had gotten much worse post-menopause and I was put in a position that year in which I really needed improved function. His guidance was poor from the beginning, but I didn’t know it, having trusted him. He gave me Estrogen only, with no Progesterone and I later found out you are NEVER supposed to do this. The dose was probably higher than it should’ve been to start, but in the beginning the Estrogen made an immediate and noticeable improvement with brain function. It didn’t make me “clear” (haven’t been clear since before I was 20), but it brought me back to a similar level pre-menopause. Within a few months I was feeling awful again, but he never said it may be because I wasn’t taking Progesterone. We then tried the Wiley protocol thinking that might be OK, which involved both hormones with the intent to restart menstruation. That turned out to be a nightmare roller coaster and much-too-high doses. I believe this set a bad ball in motion.
When I tried a different doctor I weaned off the hormones in early 2014, then a few months later she wanted to try DHEA. After whatever the Estrogen and Progesterone did to me, I believe it was the DHEA which tipped my system into a downward spiral. I developed bladder inflammation that was unbearable by autumn so it completely changed how I was eating, that plus the results of a stool test which showed the inflammation in my intestines. It was at that time I discovered a lump in my neck which turned out to be a huge mass on my thyroid. I’d had nodules for decades, but not until this time did they change/grow. At least there was no cancer. Ultimately my whole thyroid was removed in July 2015. A few months ago I wanted to slowly try the bio-identicals again and even a very low dose triggered the bladder inflammation so I’m nervous about continuing them even though I REALLY would love it to help my brain, heart and whatever else. I’m more than unhappy that I can’t.
I think I covered everything and cannot believe that any of you are willing to read any of this. I’m grateful for whatever anyone is able to help with. Thanks so much!
You could copy some of the above into your Profile which means that if, in future, someone would like to know a bit of your history they click on your name and look at your Profile giving the basic information first. Then continuing with more info if you wish.
Also if you want to alert more than one member into your response you put @ before the first letter of their name and as you continue spelling some similar names will appear below until you select and highlight the name and it will pop in after the @. The person will then be alerted by a red 'bubble' that a response has been made.
Donna, you have complex issues. I cannot answer all for you but will present what I can. NDT means natural desiccated thyroid which is what you are taking when you take Armour (as opposed to synthetic hormone) . Since you either have not been tested for thyroid antibodies or haven't been told if you have, you do not know if you have Hashimoto's or Graves disease which are autoimmune. It would be good to know. If you do, you should go on a gluten free diet and do whatever you can to heal and keep your gut healthy. This may also include eliminating dairy, soy, sugar, alcohol and caffeine. It was my experience the brain fog disappeared when I healed my gut. Healing your gut will cut down on inflammation and therefore will also probably help with your fibromyalgia symptoms. I wouldn't worry about your TSH being suppressed. When we take T3 it happens. Your T3 was over range in 1998 and 1999 but you have no more recent tests listed so it's difficult to say if you are currently getting too much T3. You state that you have blood tests done regularly so please post your most recent results along with a brief list of your troublesome symptoms. Adding the K2 to your calcium/magnesium should help with your bone health.
Thank you, Teena You know, in all these years, no one has ever labeled my condition other than saying I was "hypo." I had intended to post more test results but I wrote this all up over the course of a few days (so tedious) and finally I was overwhelmed by everything I was trying to include yet not go overboard, my brain fog making me think I included what was necessary, but didn't *sigh* :-\ All my recent blood tests show very high T3 and practically non-existent TSH. The two recent endos say I'm still being overtreated because of this. Pre-thyroidectomy I was taking 60mg for many years (now I think that may have even been too much), then the first endo played games she shouldn't have with the meds. I have been taking 90mg for a year now, still have the T3/TSH problem and this endo wants me to only cut back to a half dose (45mg) on Sunday only. She said anything less would be too little. From all I'm reading and learning recently, and certainly through all the comments and Dr. Lowe's site, etc., I'm thinking Armour is not the best solution for me.
The MDs normally only test TSH. They do not normally test for Hashimoto's. I was classified as hypo for 22 years before I went to a nontraditional doctor who tested for antibodies and found I had Hashi's. You might want to ask for the antibodies tests. TPAb and TPO.
I can't remember if this was ever tested. I've been dealing with this for decades and a number of doctors and don't know if it shows on any of the test I have in my possession. I'll scan them again with this in mind to see if it shows up anywhere!
Armour and all NDT have proportionally higher T3 than a healthy human needs. Of course this can be regulated by the dose you take. I tried NDT and did not do well so switched to synthetic T4 (Levoxyl) and synthetic T3 (Liothyronine). For me it's easier to regulate and it avoids the complication of my immune system possibly going into attack mode because of the thyroid tissue in NDT.
This thread was originally started 4 days ago. Sadly, most people will read a thread once, and if they have nothing to say about it they won't read it again. Having added lots of new information it is likely to be missed by many people.
To get the biggest possible audience for all the info you've just posted you really need to create a new thread and copy your long post to it. Then ask for feedback.
Thanks, humanbean Is it common for people to post threads this long? I feel so invasive and almost demanding, though perhaps I shouldn't. I also don't want to "clog" things. I realize most people won't follow threads (I've participated in other type forums over the years) because of the inundation of information that is simply too time-consuming. I appreciate your suggestion I was also told to actually add the usernames (adding "@") of people who I want to be notified. All this is very helpful
It isn't unusual to have nearly 50 replies. You aren't being invasive or demanding at all. Threads last as long as they last and then just fade. It's normal. And you aren't clogging things up either. The forum wouldn't be a better forum without your post.
There is a help topic with a little video showing you how to tag people which is helpful :
I still think you should just start a new thread and paste in all your info and ask for help that way. Then anyone will comment who feels they have something to offer.
Interesting about the amalgams. Have you ever had something like a DMSA challenge test? DMSA is a relatively safe chelator which can be used to provocate mercury into the bloodstream, for measurement. After being aware of my results (too high mercury and lead), I slowly had all of my open-to-saliva amalgams removed & replaced, and did several cycles of chelation with DMSA.
I should warn you that there are negative side-effects when FT3 is pushed above top of range. For instance, T3 has a lot to do with how fast you gut pushes food along. If it gets pushed thru too fast, you will not be absorbing nutrients as well as you should. So, the possibility of osteopenia with over-range FT3 isn't the only thing you should worry about.
T3 is the primary factor that controls TSH. So wherever you are WRT T4, isn't going to strongly affect TSH. If you can tolerate/convert T4, though, having a somewhat 'normal' level is helpful to avoid large swings in T3 level.
I mentioned TPO and TG because Hashi's is the root cause of something like 90% of hypothyroid cases. So I hope you will goto a doc and get these done. Autoimmunity & inflammation will have long-term negative consequences. You might check into the book by pharmacist Isabella Wentz (sp?).
As far as bio-identical hormones ... my experience has been that the proper way to do hormone therapy is to normalize adrenal & thyroid hormones first. See what effect that has, then go on to the higher-order hormones. Did a doctor actually test your DHEA? You did not say what dose you are on; too high a dose will have negative effects.
Back in the 90s I did years of chelation to remove the mercury (first EDTA, then a bit of the DMSA). Supposedly the mercury is gone. The treatment never helped anything that I could tell and felt worse in general.
My adrenals were tested (saliva) and they showed stress, but not extreme, though I have stress that shows in many other ways.
The DHEA and other things were tested and the dose was very small. My body continues to become increasingly sensitive with many things, so that's part of the problem. I was told I'm a "slow metabolizer" which I believe is the equivalent of a "slow oxidizer" (term through hair analysis) which may be at the root of pretty much everything, though that may have become the result of other things like the mercury toxicity causing things. There's a lot of "chicken before the egg" stuff with all of this, so not sure what started the ball rolling down hill, but I do think the mercury was there at the forefront when I was a kid with the amalgams (which are 50% mercury).
I think the bloods are not checking the right thing. You need to know free T4 and free T3 to know what is going on. However if you are on Armour and have been told you don't convert then T3 only is your best option. I don't know why you have been told you can't take D3 but the K2 will transport it to your bones which is what you need it to do for the osteopaenia.
Have you been tested for B12? That could help massively with the brain fog.
Thank you, mistydog It seems that most of the tests over the years, largely determined by each doc's point of view, are different as far as what details they ask for. Differences of opinions have always been one of the biggest problems in any kind of treatments I've had for decades. It confuses me, makes it very difficult to know what to address, and has more often damaged me or worsened my conditions. Right now it's pretty extreme *sigh* Yes, the Bs have been tested, I take a B-complex vitamin. Honestly nothing I've done in all these years has ever improved brain fog except a brief "semi-clearing" with estrogen (which it seems I can no longer take).
I agree with mistydog. For the most part, they've been testing the Total T3, which gives you no useful information. You need the Free T3 tested. If you are taking T3, that is the only useful test.
I didn't notice anywhere that your T3 went too high. But, in any case, it doesn't matter if the TSH is suppressed. It does not have any effect on bones or heart. It is low because you don't need it, because you are taking T3 'ready made', so to speak.
Taking T3 only is worth a try. It doesn't suit everybody, but then, neither does anything else!
Eddie83 is a bit confused in her comments. Those levels are for people on T4 only. When you add in T3, everything changes. The TSH will become suppressed, the FT4 low, and you can adjust your FT3 to be wherever you need it - i.e. the level at which you feel well. When you're taking T3, the TSH and FT4 are no-longer relevant, and there's not point in trying to bring them up.
NDT is Natural Dessicated Thyroid - e.g. Armour. You've been taking NDT without knowing it! lol I don't know how it got that name, but it covers all the différents types of pig thyroid, such as Thyroid S and Thiroyd. There are several of them.
You are wasting your money on multi-vitamins, you will not get anything out of them, because everything is all mushed up together, when they should be taken at different times, and most of them cancel each other out.
OK, first---that is VERY disappointing about the multi-vitamins. I do know, though, that when it comes to those tests, my levels always show up as within range. I really appreciate the further explanation about the T3. I forgot/neglected to post more recent tests (I have such a plethora here, I also didn't want to be obnoxious), but my T3 continues to be high, occasionally "out of range" high *sigh* I don't think my level has ever been suitable at any time and nothing whatsoever has cleared symptoms. I do know that pre-thyroidectomy, the one time I was mistakenly (by the pharmacy's wrong records) was given 90mg instead of the 60mg I took for years, that my muscle pain/weakness noticeably increased. All of this is really making me want to try T3 only. Now I just have to find the right doctor. I'm hoping the list through the NTH Yahoo Group will prove to help with that
The thing is, Doctors don't really understand the endocrine system, especially with relation to the thyroid, and they think that being in range is sufficient when in most cases, you need to be above a certain level of the range to be optimal. Bear in mind that most ranges are fairly arbitrary anyway, and you are on a hiding to nothing listening to doctors. Be your own advocate, and learn as much as you can.
High doses of a sublingual B12 would be very useful to you, I bet you are very low.
I've tried so many things over the years, different brands, doses, all kinds of stuff. I can't afford any of it, rarely can tell which thing is or isn't affecting what, and it's extremely rare that I detect any benefit :-\ I take extra Bs in a supposed high-quality complex formula. If it's enough, I don't know. Blood tests are not done often enough and are often incomplete anyway. The frustration is beyond me.
I tell you, I've been my own advocate for several decades now, but it's extremely frustrating and difficult (this is bring up the tears) because my brain fog (for over 40 years now) makes it all a struggle, not having any money due to this and being disabled, doing everything myself with this stuff 'cause I have no one here (home, in my life) that helps me try to sort all this info out or make things work, so the stress and inability to do anything effective in a consistent, long-term way is pretty much killing me. The doctors have made me worse instead of better so I spend (as do all of us, I'm sure) an inordinate amount of time on this, rarely getting anywhere, and the rest of life's priorities continue to fall to the wayside making pretty much everything in life go downhill and at 59 years old time and certainly health, are running out. None of it is good. I sincerely hope that I can make sense of all the suggestions and info you all are giving me and actually get somewhere. After 40+ years of trying so many different things yet getting nowhere but worse, it's extremely difficult to handle :-\ Thank you so much for your encouragement
I don't think anyone would think you obnoxious. We do need the details to get a clear picture.
I'm not sure you'll find a doctor that will put you on T3 only. They don't know enough about thyroid, and think T3 is 'dangerous'! lol You might have to go it alone. Or, at the very least, buy your own, and try to find a doctor that will monitor you.
This is what continues to frustrate and frighten me because it seems the "T3 only" protocol may be the thing to make a difference. I'm pretty fed up and generally discouraged. I sincerely hope all the info I'm gaining here will help something change for the positive I really appreciate it!
If I could find a doctor who would help, it wouldn't be so bad, but so much damage has already been done by wrong protocols and meds, I'm unsure of what actions to take. My brain's so bad right now, my life has become very haphazard and I do little consistently anymore. Me being in charge of me is becoming much more precarious in recent times :-\ AND ineffective because it's all a muddled mess that no one has yet to handle properly, doctor-wise.
That's why so many of us self-treat. They just do not know enough to help us. I have seen many doctors in my time, but I have never seen one that hasn't made me slightly worse in some way or other. They just don't have much idea of what they're doing.
I was on T3-only (as Cytomel, GF) for a year. It turned out that I was stable on 62.5mcg (as 5*12.5mcg doses), which worked out to about 0.82mcg/kg body weight. When checking where you are in the FT3 range, keep in mind that there are several different ranges used by different labs. The lab I used to use said 2.3<FT3<4.2 pg/ml was the range. The lab I am using now says 2.77<FT3<5.27 pg/ml is the range.
There are a lot of synthetic multivitamins which I would not trust. However I do trust a food-based multivitamin (the Megafood brand).
Generally I take food-based, and trust the Mannatech brand. When I have to take other things, I'm very skeptical. In fact, a couple of years ago, though it said it was "all natural" etc., I took "mega" B-complex and within a month my hair started falling out. One homeopath I know said there was probably tar in it *sigh*
The ones a lot of people take are Jarrows Methylcobalamin B12 (avoid cyanocobalamin if at al possible), I take 5000 iu. A good B complex is needed in addition, because there's just not enough B12 in the complexes.
Besides, you would be swallowing the B12 in the B complex. Presumably, your Jarrow's is sublingual, which is the best way to absorb it. But, you should know your levels before starting B12.
mistydog and greygoose I didn't post it anywhere and I'm not sure I have anything recent with B12 in it. I did finally get a copy of recent blood and urine tests though, and the only things "out of range" were the BUN/CREATININE RATIO (don't know what that is) and the excretion of calcium in urine which was 284 (35-250) though it showed 9.3 in the blood (8.6-10.5). I have no idea how much I was excreting in the urine when I went to the ER that first nasty night when I downed about 2500mg over the course of a few hours, then another 500mg in the morning and had symptoms briefly then not for the rest of the day and the blood showed 9.9. At 8.9 I was hypocalcemic with symptoms all day the next time I went to the ER. There's got to be something with the lack of absorption into the tissues and I think the D toxicity created it. If the symptoms weren't hypocalcemic (regardless of the calcium supposedly normal in the blood and being excreted in the urine), then this wouldn't be an issue. I'm either reacting in an allergic way, or the calcium isn't making it into the tissues where it belongs. I just don't know.
years ago I was getting B12 shots, then eventually was doing it myself at home. If it was doing something for me, it never showed and I don't remember feeling any different :-\
When you say "not altogether" do you mean not all at the same time during the day, or not all of them every day? It can be confusing partially because I sometimes get differing opinions. I have someone who insists you take calcium at night and on an empty stomach, then I'm told (including by supp. companies) to take it with food, which is what I'm doing now.
Right now I take the Calcium/D/Mag. pill and the K2 together. My multi--in the same pill--contains only 3mg of iron and 30mg C. I take extra C, but always take it when I take the multi. I don't take extra iron though. I wonder if I should, though I'm not anemic. This all gets very complicated for my little brain :-\ Heck, I was talking my thyroid med since the 90s and it wasn't until months after I had my thyroid removed that I was ever told I was supposed to take it at least 4 hours separated from minerals. NEVER told this and I had no idea. It never seemed to affect the Armour absorption regardless of when I took them. I will never completely understand any of this, I don't think.
It very unlikely you got the full dose, though, if you took it with iron. Or with calcium, vit D, magnesium or oestrogen. They should all be at least four hours away from thyroid hormone.
It is complicated fitting in vitamins and minerals, if you want to get the best out of them. There are those that say you shouldn't take vit D and vit K2 at the same time, because they are both fat soluble, and compete for the fat.
But taking a multi-vit with iron and vitamins, means that the iron destroys the vitamins, so you don't get any benefit out of them.
Iron and magnesium bind together; iron and calcium bind together. So, you don't get any benefit from them, either.
Before taking any iron, you should get your ferritin tested. You don't want to take too much, and no point in taking too little.
Since you are sensitive to so many things ... wondering if you have looked at stopthethyroidmadness.com? She describes some health "gotchas" that block successful thyroid treatment, such as MTHFR. Before I reached a wellness plateau, I also found her guidance on Paul Robinson and the T3 circadian dosing method helpful. Issues like these will only be known/understood by a small number of 'alternative' MDs who only accept private pay ... such as the clinics run by Kent Holtorf.
Yep, that's always been an obstacle for me---I can't afford to pay out of pocket And I'm just now beginning to look on that site. I'm constantly overwhelmed and am feeling very much so now that I opened this particular box. It'll take a while to read, absorb and hopefully put into action. I really appreciate everyone's input so much!
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Low t3 with high t4, graves.
Armour to t4/t3 combo 
