I have a lot going on and find it hard to explain it all. put it all on profile and then lost it all.
breast cancer, lumpectomy, radio and chemo 14 yrs ago aged 28
diagnosed hypo soon after. struggled with hyper/hypo symptoms since, signs of hashi was the technical term from endo! treated badly with levo
Mild Sle lupus 3yrs ago, connective tissue treated with hydrocoxy
2nd lot of breast cancer soon after this, mastectomy and tamoxifen (under duress)
I have three consultants, endo, rhumy and oncologist, at three separate hospitals in three different counties. and a next to useless dr.
this last year i felt i had to educate myself on all these ailments and look at the big picture, i read some of the talk here and am bamboozled by some of the knowledge.
l work full time self employed and employ too, there are very few sick days to be had.
so i am now on supplements
b12 complex
selenium
vit k2
sea kelp (actually reduced levo when started this controversial i know)
vit d
bio kult pro biotic
magnesium citrate
my adrenal function was good?! some injection thing.
my problem was all the illness and pills have the same symptoms and every one was happy to give me more for more symptoms but where is it coming from.
stopped taking hydocroxy and tamoxifen 6mths ago, have sent off estrogen saliva test to find out where this stands.
endo introduced t3 (20) in march and cut back levo from 150 to 125
back to endo oct and reduced t3 to 10 and levo 100
i have discovered levo can be a cause of medically induced lupus so put this to endo and my queury wasn't answered, tried the new combo for 4 wks and felt no better
i have seen 2 endos in my time and both times i say i feel poisoned on levo to no avail, so decided to see how i felt on no thyroid meds, knowing i had a blood test due for endo two weeks later. resulted in very cross endo and tsh 56, she is now happy to treat me with lio only. and i think i got my blank page.
i have currently been on t3 only for 3 wks and i'm doing ok, headaches have passed,
fear i have some depression and now sciatic in left leg, am fatigued
endo wants blood in 3 wks time, but three wks on t3 is enough to give them a good result isn't it?
she also wants me to take am dose before next test, i don't think this is right and really just want an honest result for me to judge.
i want t3 to work for me is it too soon for a blood test and should not take meds before.
and yes i read and understood the post on this is advice only from non professionals.
Written by
weg1
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Weg1, a thyroid test is a snapshot in time and will tell you your thyroid levels 3 weeks into that dose. IMO 6 weeks would be a better guide to determining levels and symptom response.
T3 peaks in the serum for 2-4 hours so taking it before the test means levels will be high which is often an excuse for dose to be reduced. Unless the endo specified 1 hour in advance of blood draw, you could take it 6 hours before the test, or 'forget' to take it.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
My heart goes out to you. I had double mastectomy over a year ago (no reconstruction, though they pushed/bullied/ridiculted, etc.), haven't forgiven myself for alowing chemo (more bullying, fear-mongering, etc.), and somehow found the strength to go against docs/friends, etc. to do radiation/tamoxifen.
See thetruthaboutcancer.com, chemo CAUSES cancer. Best to boost immune system, find alternatives, clean up stress in life. I never recovered, over a year after chemo & I almost died a few months ago, all my systems are shutting down. They also put me on cymbalta during chemo so didn't realize the side effects. Severe thirst blamed on cymbalta, so went off 13 weeks ago. Nightmare withdrawal, left me with brain damage (already damaged, but still) & extreme histamine intolerance (see beyondmeds.com): selective serotonin reuptake inhibitor means atrophy of up to 60% of the receptors; norepinephrine reuptake inhibitors means it acts like an antihistimine so if you go off your body can no longer handle histamines. I can only tlerate steamed vegies. I now have major loose skin around my eyes as the swelling (anaphylactic shock over a year, docs told me it was "nothing") has gone down in the last couple of weeks as I get closer to figuring what I can/can't eat.
I stopped my levo for similar reasons, starting to realize all meds are poison (first chemo was mustard gas), meant to shut a body system down so the drug can replace it & make us unable to live without it. Thought it might be too drastic, so asked for Armour instead (not synthetic). When I'm healthy again (keeping the faith), I'll try to go off with the help of iodine.
See EDNF.org, google EDS, if you have it you can find some support, if nothing else. I'm so glad you're gettingoff tamoxifen (another cancer causer). Google leaky gut, histamine intolerance, see if either fits you, dietary changes can help a lot, keep a food diary (it will take me at least four months to make decent repair on my gut & brain). Good for you, sea kelp, you're more interested in finding out what will help you than the docs who want to give one drug to cover the side effects of another for eternity, while you rot in front of their eyes. Also, look into book Why Isn't My Brain Working by Datis Kharrazian.
If you don't wnt to take am dose, don't. When the results come in, tell her then that you didn't take it, maybe she'll have you do it again after taking it. I would trust yourself, it behooves you to investigate, admit if you made a mistake or need to try something else. Docs just want to be right & not have us complain so they can be done with us in under five minutes.
I sympathise very much with your whole story. It is a huge struggle on your own when I think you instinctively wonder if you're getting the right advice. 10mcg of T3 and 100 T4 isn't the best ratio and I would leave about 24 hours between your dose and your blood test. That way they will not adjust your hormones according to the blood test because that can result in us becoming more unwell. They just don't know these facts.
Cursor to page 80 on this link and you will see on top column on the left-hand side they found the ratio of 3:1 was best for patients.
I didn't get/feel well on levothyroxine. I was fine on an NDT and am well also on T3 only. If you read the link below on T3 you will see that few Endos know about treating us with it. They have been told only levothyroxine has to be prescribed.
Do you have a print-out of your latest blood test results, with the ranges, so that members can advise. They shouldn't adjust thyroid hormones just because of the TSH result.
I haven't had the ill-health/ops that you've undergone. This is an archived website and Dr Lowe died prematurely due to an accident. He was an Adviser to Thyroiduk.org.uk. He did say that if we weren't treated properly with thyroid hormones that we may develop other more serious diseases.. He would never prescribe levothyroxine - only NDT or T3. He himself took T3 only for Thyroid Hormone Resistance. Excerpts:
Our treatment team uses the TSH level only initially to help clarify a patient’s thyroid status. But during treatment, we completely ignore the level. The reason is that the TSH level is totally irrelevant to normalizing the patient’s whole body metabolism and relieving his or her suffering. The only clinical value of the TSH level is to see the effect of a particular dose of thyroid hormone on the pituitary gland’s "thyrotroph" (TSH-secreting) cells.
and
You may find it helpful to keep in mind a clear-cut double standard of the endocrinology specialty. Endocrinologists keep thousands of thyroid cancer patients on TSH-suppressive doses of thyroid hormone. But these specialists vociferously warn of grave dangers if hypothyroid patients use the same TSH-suppressive doses. However, meta-analyses of studies show that these doses are harmless to thyroid cancer patients, despite them staying on the doses for decades. Rather than harming the cancer patients, TSH-suppressive doses appear to benefit them: researchers write that the patients report feeling better on these doses than hypothyroid patients do on T4-replacement. (In T4-replacement, of course, the patient uses a dose of thyroid hormone that doesn't suppress the TSH.)
The endocrinology specialty cannot reconcile this discrepancy in its practice guidelines for the two different groups of patients. This to me is one of many pieces of evidence that T4-replacement is driven by commerce—not by science or an aim for therapeutic effectiveness. I provide rock-hard evidence for this conclusion in my forthcoming book Tyranny of the TSH.
Unfortunately, what I also generally find among these particular MDs is a mixture of both irrationality and arrogance. By arrogance I mean an attitude that they can’t possibly be wrong about anything they believe, simply because it is they themselves who hold the belief. They believe it, so ipso factor, it must be true. Irrationality and arrogance are a tough mixture to deal with. The reason is that the doctor’s arrogance protects him or her from open-mindedly evaluating the evidence that shows his or her belief to be wrong. So he or she won’t consider for a second any evidence that contradicts the belief.
As Endocrinologists know very little about treating patients with T3 I wouldn't take any thyroid hormones before your appointment. Take it afterwards and she'll be happy you aren't overdosed and try to remove/reduce.
weg1, I remembered you were wondering about taking your meds before/after the blood test, and I just ran across the link below. I posted it separately, but I specifically copied it because of you & want to make sure you got it. I also posted that a doc told me to only use brand name thyroid meds because the generics change their fillers all the time (probably where the poison comes in - you know your body, trust your gut). I just switched to Armour Thyroid, it's brand name & natural (made of pig thyroid) & I think covers both the T3 & T4 (don't really care right now, my thyroid is the least of my problems these days).
weg1, i have Hashi and had DCIS (stage 0 BCA) and then stage 1 metastatic breast cancer dx in 2011. I had the cut, poison, burn technique (surgery, chemo and radiation) then tamoxifen. However, after the tamoxifen making me sick for nearly two years i ceased it when i got to the stage that it was making so sick i couldn't eat, walk, sleep, etc. Cried to oncologist. Then found a website that listed drugs that are not tolerated by people with Hashimotos and Tamoxifen was clearly on the list! I was astounded. Anyway, it's worth thinking about whether some of your symptoms or unwell feelings are coming from the Tamoxifen. I no longer take it and feel 100% better. However, the chemo had stripped my body of lots of things and I eventually saw an integrative doctor here in Australia who specialises in thyroid, nutrition, etc. He did tests and upped my meds and got me converting T4 (levo) to T3 better (I was pooling because I was deficient in iodine, ferritin (stored iron) and various other things. I now take Iodine and selenium drops daily, as well as a liquid mineral iron supplement that comes in a sachet (to keep my ferritin around 100-110) and take Vit D3 in large dose once every two months. Also B12 severe deficiency can cause lots of neurological problems. I have to take B12 as well intermittently. Also magnesium. I had to cut out all gluten, dairy, and nearly all sugars. The auto-immune protocol (AIP) diet helped a lot and helped me identify allergies and food triggers for my illness, which is must easier to manage now. I also had anaphylaxis before i was diagnosed with Hashi and treated with levo but since I've been medicated and did AIP most of my inflammation has gone and I am not so easily triggered by allergens (in my case paint fumes, perfumes, solvents, colognes, etc). I recommend you see a good integrative doctor. They can be a bit of a cost up front but I found it worth it. I got my health back and my immune system is doing much better. I will be adding T3 in Februrary and looking at alternatives to levo soon too. Good luck.
PS you need to check your iodine levels as they are relevant to both your ability to convert T4 to T3 and to breast and cell health. Mine were severely deficient but now that I'm supplementing I'm feeling sooooo much better and hopefully this will improve the health of my breast tissue also. Some US researchers have made a link between BCA and iodine deficiency....
thank you for the info, getting to these conclusions my self, was supplementing iodine, but recently scared myself off it, if hashi is this not inducing attacks.
have been very well off tamoxifen and levo, working on t3 only for now. just battling fatigue but have made minimal diet changes so far (my bad day diet is probably most peoples good/norm) and i work too hard.
also have? connective tissue sle lupus, which can be triggered by levo, seems that has dissipated too, fingers crossed.
they've booked me in for a mammogram, like to see how they do that on a masectomy!
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