I have hypothyroid and have been on T4 for 27-28 years when it failed me, terrible headaches, brain fog & palipatations when I finally, after 90 days of waiting, got an appt. with an endo, who immediately put me on 75 mcg, down from 88mcg, of T4, and 5mcg of T3. It immediately made me feel better than T4 alone. The T4 was Synthroid, a synthetic drug that cost me a buck a pill and the T3 was a generic "free" pill. I realized that the generic drug Levothyroxine had been changed from Synthroid, by the Pharmacists, years ago, but couldn't remember how many years, and the T4 was generic so I decided, after palipatations every morning at the same time to change the Synthroid but when I called the endo, his assistant, secretary, informs me that I can't even see the endo until I see a heart doctor for the palipatations, she says I have to notify my primary, so I do, and he sees me the same day. As soon as I tell him I just want to see the endo about switching the T4 to generic to not pay for it and that it gave me heart palipatations he says he'll write the switch but then when I mention I'm on generic T3 he lectures me, tells me T3 is useless and says he can prove it. I ask him how and he says if I take a blood test it will show that I have an excess of T3 in my body now because it does not "work," and he will switch me back to T4 only Levothyroxine and gives me a prescription for the blood test: Serrum B12, TSH, Free T4 & Free T3. And, I am really sweating it because maybe he "knows" something I don't but after only 3 weeks on only 5 mcg of T3 how could that happen? Anyone have a similar experience or have any idea about T3 being too high and "not working" as my primary said? Thanks.
Primary doctor slams T3: I have hypothyroid and... - Thyroid UK
Primary doctor slams T3
Ummm. First, I have to ask, what were your previous test results with ranges? Other more experienced folks on here will need that info as well. I can certainly say without a doubt, that it is NOT worthless for me.
Here's the latest one, done yesterday:
07/14/2018TSH0.11completemIU/L0.40-4.50
Laboratory:
Quest - Solstas
2400 Wayne Memorial Drive Suite D
Goldsboro, NC 27534
tel:919-735-5524 | fax:919-735-5524
07/14/2018FREE T4 INDEX (T7)DNRcomplete1.4-3.8
Laboratory:
Quest - Solstas
2400 Wayne Memorial Drive Suite D
Goldsboro, NC 27534
tel:919-735-5524 | fax:919-735-5524
07/14/2018T4 (THYROXINE), TOTAL7.4completemcg/dL4.5-12.0
Laboratory:
Quest - Solstas
2400 Wayne Memorial Drive Suite D
Goldsboro, NC 27534
tel:919-735-5524 | fax:919-735-5524
07/14/2018T4, FREE1.2completeng/dL0.8-1.8
Laboratory:
Quest - Solstas
2400 Wayne Memorial Drive Suite D
Goldsboro, NC 27534
tel:919-735-5524 | fax:919-735-5524
07/14/2018T3, FREE3.3completepg/mL2.3-4.2
Laboratory:
Quest - Solstas
2400 Wayne Memorial Drive Suite D
Goldsboro, NC 27534
tel:919-735-5524 | fax:919-735-5524
07/14/2018T3, TOTAL106completeng/dL76-181
Laboratory:
Quest - Solstas
2400 Wayne Memorial Drive Suite D
Goldsboro, NC 27534
tel:919-735-5524 | fax:919-735-5524
Your T3 is not too high, it's pretty much in the middle... this test is WITH T3, I assume? Maybe I am missing something---but all I see for your free T4 is DNR... what does that mean? Your doctor is acting like the several I have fired---because we can do that here in the US. He is going based off TSH, instead of realizing that when medicated, esp with T3 or NDT, the TSH is irrelevant. My guess is, he thinks your low TSH "proves" his point. It's bull$hit, and maybe you should "fire" him and find a new doctor. I am sure there are others on this board that know a lot more than I do, and it might be good of you to start a new post with the results and ranges, and with your original post to receive some further advice, but I'll let you know, my TSH is lower than yours, and my T3 is higher than yours---can't be sure about your T4, but mine is in top 2/3 of range. I use NDT 65mcg and 25mcg Cynomel (Mexican T3). My doctor has no problem with my numbers, because I feel well. Wish you were closer to Blue Ridge, GA, as I would recommend her 
The test is with T3. I been on it 5mcg, and the last week 7.5mcg, for almost a month. DNR sounds, to me, like do not report, I don't know why but this is off my primary doctor's results sheet & he probably doesn't (know or) think that I have access to it. I can see that the TSH is super-low & I could not understand why, until now that you mentioned it is irrelevant. This is the first time I had it this low because I was never on T3 before this. I'm in Tampa, Florida but have a son and daughter in Marietta, GA. & could go to Blue Ridge if need be. I lived in Atlanta for 10 years, in the 80's until 2005.
Ga is not that bad a drive from North Carolina for the right doctor. I live in Atlanta, GA-not a bad drive to Blue Ridge. Do you feel comfortable PM'ing the info? I have a new endo who so far seems good but I'm beginning to see some possible skirmishes ahead. Would love to have a backup. Thanks. Take care, irina
I was on T3 only for many, many years. If T3 didn't 'work', I would be dead because I don't have a thyroid. Your doctor is an ass!
He admits to be "tied to the insurance company," believe it or not. He told me when I gave him a look of disgust that "They" everything was: "insurance controlled."
Shocking and untrue. One wonders just what his motivation is? I am so sorry for your experience. Seriously, why should any patient trying to find a 'way through the woods' have to put up with this disgraceful treatment. I recently watched the press coverage on TV of the NHS celebration of 70 years in existence. It was littered with praise, platitudes, stories of hope and success which is fine but please present a balanced unbiased narrative. On a daily basis folk on this forum are reporting their contrary experiences and unacceptable accounts of Endo and GP visits. Nothing less than pure neglect and contempt for a basic human right. Sometimes I absolutely despair.
I'm a writer and someday (soon) i hope to (be able to) write the story that shows the reality of having a disease as bad as hypo or hyper thyroid and being treated by these doctors as if you are an idiot when, in reality, they are "owned' by the insurance companies and the drug companies. The only endo's worth a salt are those who have actually had hypo or hyper or or Hashimoto's, Graves or even Adrenal fatigue and can put themselves in your shoes, knowing how terrible & stressful it can be.
We look forward to reading your published story. Is it not surprising that it seems that 'worldwide' have the same viewpoints except doctors who are independent and know how to bring back good health to their hypo/hyper patients. Not many these days unfortunatley for us as most have retired or had Licence withdrawn. We have some good researchers who have proven that T3 is needed by many. and published articles. One is diogenes
One main thing to consider is that the majority of sufferers are women - originators of hysteria and other dismissive and derogatory terms. I have known several men who went to their doctor with tiredness and they were immediately tested for thyroid disease, which none of them had. I could have told them they didn't as they had no symptoms It took me, with so many common obvious symptoms years to get a diagnosis.
I spoke to about a dozen doctors 30 years ago and none had any answers, the TSH was good ... period. It took a recent graduate nurse to tell me she thought it was my thyroid and then, of course, all the doctors knew ... all along... yeah, right.
I think it is a really good idea to write an article about how hypo/hyper-thyrodism are diagnosed and treated. A relative has Thyroid function blood tests that look like hypothyrodism, so her doctor insists she must take T4 (Levothyroxine), yet when she is taking it she is anxious, has difficulty sleeping, needing sleeping tablets, loses weight (all symptoms/signs found with excess T4), but her doctors focus only on the blood test, and seem to ignore symptoms and signs.
I think a part of the problem is that doctors have to learn about many conditions, so are taught about hypo/hyper-thyrodism in a very simplified way: if TSH is high then the person must have hypothyrodism, and if free-T4 is below the reference range then it must be "Overt" Hypothyrodism, but if free-T4 is inside the reference range then is "Subclinical" Hypothyrodism.
Moreover, the "reference ranges" are set based on the the test results for 95% of the healthy population, which means that 5% of the healthy (ie. no symptoms/signs nor history of hypo/hyper-thyrodism) would be diagnosed with hypo/hyper-thyrodism purely because they they happen to be the 5% outside the reference ranges. Similarly there can be people with results that are within these reference ranges, but may actually have symptoms/signs of hypo/hyper-thyrodism.
Therefore in reality the thyroid system is much more complex that what is taught, and there are individual variations, eg: due to having mutations in either of the enzymes that convert T4 to T3, or due to other conditions such as low cortisol levels. (I have been reading a lot on pubmed about this, and can sent you some links if interested). I think as you say, that endo's that have hypo/hyper-thyrodism understand condition better so can look more carefully for symptoms/signs and have read much more about the condition so realise it is actually more complex than they have been taught.
I live in UK, so insurance companies aren't as big an issue, however I think with many drugs here that pharama companies do have significant influence on what doctors prescribe (as does the cost - T3 is expensive in UK, so GP's are being told to avoid prescribing it). Levothyroxine is the third most prescribed drug in the UK, and first or second most prescribed the the US (after the combination hydrocodone + paracetamol tablets), which also makes this an very important topic to write about.
Yes, I am writing an extended article (turning, as always, into an ever slowly but surely book) concerning the thyroid and would gladly accept any information, including Internet Links with fact-based information, such as what Shaws referenced in a post. I love it also when it is an article written by a scientist and/or doctor that is also a thyroid sufferer and thereby, speaks truthfully about these things so many of us weary human beings, who suffer through so silently but miserably, just looking to be able to feel "normal" again, can read and feel a little better. I suffer every time I read about someone who has gone through these depressions and sufferings through no fault of their own but caused by doctors, said to be recognized as human beings, who willfully (and many times, I believe, knowingly) continue to write prescriptions because they make (more) money by kowtowing to the insurance and Pharmaceutical conglomerates than they do by telling the truth. A philosopher once said: "Yet the deepest truths are best read between the lines, and, for the most part, refuse to be written." This, I do not believe; but that they refuse to be "recognized" by the "ruling mob of aristocratic Donald Trumps, the Putins, Ferdinand Marcos's, Duerte's, Bashar al-Asads, the Kim Jong-Uns' and, as far as I'm concerned, the Hitler's and Stalin's too. As I once served in the Marine Corps, 1962-'65 and saw, first hand, while stationed at Cherry Point, North Carolina, a brand of racism there, that was at such a point that they refused to fix a flat tire because a black soldier-friend of mine had "touched it," at age 20 I "woke" up because I had lived on an Island (literally) Guam for five years (ages 3-8) and then in San Antonio, Wash., D.C. and New York. I saw this same overt racism in San Antonio but also in New York, and Washington, D.C. This was racism to the point where every neighborhood was segregated: these "neighborhoods" were actually "drawn up," by the "elected officials" of those cities and towns to specifically put certain ethnic groups in specific parts of those towns or cities, thereby keeping them in their "place." Their place was (for them, the wealthy aristocrats) the "high-ground," overlooking the towns-people and city-folk while the "servants" were put in the lower (known as flood zones today) areas of the city, towns, etc. This, if you research, like I do, has been traced all the way back to biblical times and is incessant to this very day. And so, why should it be any different for these doctors to preach Capitalism not only to their friends and families but to live it themselves, many of these highly educated dim-wits actually believing it because it was (is) necessary for them to "keep" their jobs and thereby their "statuses" in their communities. There is a saying, by the philosopher Xenophanes that goes something like this: "Pure truth hath no man ever seen nor shall ever see or know." I am trying to prove that statement to be false but it is very hard, near on impossible but I try still and only hope that these doctors, along with the vast majority of human beings, will wake up together, and all join hands and step up a notch, or so, and get on the "Love Train" cause it's going around the world and if you miss it, well then, all I can say is: "I feel sorry, sorry for you."
Wow !
I so enjoyed reading that !
Your points on RACHEL cism made me weep.
if only we could all see through your eyes ... and understand in a daily basis ... how to make it right .
Take care and please finish the book ..
Luv mx🌹
Thanks so much for your kinds and I will tell you that I met with my V.A. G.P. yesterday and he basically washed his hands of my case (me) after hearing me say how “bad” all the doctors I've seen were at (mis) diagnosing my hypo and (re) adjusting my T4-only as I mentioned my small dose of T3, the first dose in over a year of taking too high (I feel) or too low of a dose and even mentioning I might be a candidate for T3-only. To which he stated that he had over a thousand patients on medication but none on T3.
“That's probably because you take them off if they're on it,” I said and he snarled.
“I don't think we're going to be able to help you here today Mr …
“Why's that,” I broke in.
“Well, do you think you're smarter than your doctor(s)?”
“I never said that but I know my body and when I get heart palpitations after taking Synthroid for a week straight and then cut it in half and take that and the palpitations go away I kind of think: “why did I have to be the one to figure this out?”
“I watched him grimace and write something on a paper. He then spoke about why T4 was so good and I complained and he said he didn't think 'they'd be able to help me today,' by now, for the fourth or fifth time.
He gave me a slip for another blood test, they had taken my blood for everything but the thyroid, a week previously, and I was to take another blood test, this time, only for the thyroid, the next day.
When I left, with my wife, the doctor gave me a copy of his message to the endocrinologist in Tampa. He had explained that the VA endo's were available on a T.V. remote as they only worked between 9AM and 12-noon and it saved time but then he told me that he had made a note that I needed to see the VA endo in person.
'Great,' I thought, as he added insult to injury, when I read the notes he had written to the endo in Tampa, which included that I, the patient, was: “adjusting my own prescription doses.”
And so, as I get ready for bedtime I have two bottles on my nightstand, one for (approximately) .50 MCG of T4 and and one for 7.5 MCG of T3, hoping amd praying that some day, in the coming days, weeks, months and/or years I will find my proper dose of T4, T4-T3, T3 only or NDT. I really don't care which one it is; I would (gladly) go back to T4-only but only if it worked as it did the previous 27 years, which is one thing I'm the surest of---it won't.
Hopefully, as I wonder how I will finish the book ... hopefully, I will some ... day.
Should have read ...racism
Don’t know what happened there sorry
Mx🌹
Well said! Doctors just dont get how we feel.
Only the ones who have had themselves experienced the depths of the pain that Hypo, Hyper, Hashimoto's, Graves patients experience. Some have & are better dr.'s for it. Also, some have relatives who have experienced it. This is a revolution, as far as I'm concerned, and we who are suffering need to make a promise to have our voices heard, one way or the other.
Exactly. I have been sick for over 21 years with graves and hyper. Iam very well educated on my health. I also have high blood pressure. I now take 350 mgs a day for my bp. I have had two good doctors including my endo. My body has taken a beaten from being sick. We need to be heard!! Thank you for your service!!
If Hillary Clinton (released on her health statement) has Hypo & takes NDT why shan't we all, I say?
I was on thyroxine for 16 years.It gave me ectopic beats almost every day.It gave me episodes of tachycardia regularly.I would need to lie flat until it passed.Not even a pillow.
At diagnosis in 1997 & again in 2017,I had all the outpatient tests.The second time,I had more tests,probably due to improvements in technology.
Both times,I was told my condition was non-idiopathic(not life-threatening)& was called supraventricular tachycardia.
I do not get ectopic beats on T3-only or NDT.
I do occasionally get palpitations(tachycardia)on NDT but they resolve in minutes and are usually caused by my diaphragm going into spasm & pushing up on my heart as a result of indigestion.
I was prescribed T3 until the clamp down,but have bought my own online from the start.First,Greek T3,then Mexican.It is very economical & I believe,better quality than NHS T3,which has too long a shelf-life,in my opinion.Getting it prescribed privately would have been too expensive for me.
I now take NDT,not T3.
I did see an endo when my T3 was withdrawn by the NHS,to see if they would continue to prescribe it.I walked away,after he told me he wanted me back on thyroxine & at a lower dose than I was on for 16 years.He was deaf to any talk of how much better I felt with T3.
It sounds like your T4 wasn't converting into T3, but NDT has T1, T2, T3, T4 & Calcitonin. You mentioned you were on T3-only. How much did you take to compensate the T4? Do you have Hypo? I thought (a certain amount of) T4 was necessary?
I was on T3 for over a year & felt very well on 55mcgs.Above this,I got faster heartbeat but no shift in temperature on waking before getting up.I would feel too hot & get "hot flashes"I now think about 40-45mcgs would have been more sensible,as that high a dose seems to have shut down my hair follicles & my hair became very thin & fluffy,though I had no visible signs of shedding.
I have been on NDT for several months.So far,so good.I am still adjusting dose,but only at 6 week intervals:minimum(see TiredThyroid.com)
I have taken T3 only, for the past two days and skipped T4 completely & I actually feel a bit better. I was reducing the T4 from 75, while upping the T3 from a prescription 5mcg to 7.5 and I cut the T4 Synthroid pill in half because it was giving me heart palipatations until the past two nightsWednesday & Thursday night, as I took only T3, and when I woke up, at the usual palipatation time (about 3 hours after I ingest the T3) I barely felt anything. I'm really in unknown territory here, I know, but I so dislike T4 I am at my wit's end as to what to do about it. It gives me these heart palipatations which T3 appears not to, so......? I am in a bind, not sure what I will do but one thing I won't do is ask my doctor what to do; he took me off T4/T3 combo and stuck me on T4 only and when I called the Endo his sec/nurse said I had to call my primary doctor to get another appointment with him because of the insurance procedures. I very barely made it through last night, Thursday, (without taking some T4) because the tendency to “obey the doctor,” as my mother always said (as everyone always said, it is ingrained into our minds) kept ringing in my ears, along with the tinnitus, but I held fast, for some “unknown” reasoning, and woke up this morning feeling great. I took my temperature. I usually have ice-cold hands and feet early in the mornings and late in the evenings but not this morning. Also, I usually have a temperature anywhere from 94-95 to mid 96's. This morning it was 97.5, the highest I usually ever experience and that in the afternoon, not first thing in the morning.
I really can't discern if this is a “temporary” state or not but why would I (now) (re)take anymore T4?
I can only wonder what comes next. I realize T3 is said to be good for the heart and adrenals and that cortisol and hydrocortisone may help if I have adrenal fatigue but, right now, I'm just trying to figure out if I should take a low dose of T4 this evening or stick it out another night, the 3rd, on T3 alone?
I should just find a doc to put me on NDT but it ain't easy; I think I need some cortisol for my adrenals first.
I was on 125mcgs T4 for 16 years & always had ectopics & episodes of superfast heart rate.I don't get either on NDT or T3.The NHS prescribed T3 to take alongside the T4,but I had absolutely no help on how to dose from the medics who prescribed it.I made all my decisions with help from this forum.As I said previously in this thread,the medics insisted I see a cardiac specialist for the palpitations(tachycardia)but it was getting off thyroxine that sorted them.
I decided to go it alone & slowly reduced the T4 & upped the T3 until I was taking only T3.I buy my own NDT,just as I did T3 when they stopped my NHS T3 & I use this forum to journey to the right dose for me.
I used T3-only to heal my adrenals,as recommended by Paul Robinson in his book.
T3 calmed my heart & helped my adrenals recover after 16 years on T4-only.
That was a hard decision to make, I know but that is about what I'll have to do also. Thanks for that.
At the beginning,it is totally nerve-racking!Especially as one is unwell & may have the nightmare of brainfog.Its a nightmare-overwhelming & scary.It took me ages to find a way to start,because my brain was not functioning well & I was SO anxious.
As you feel small improvements,self confidence grows.It is so important to keep remembering how long we have been unwell & give ourselves as long as it takes to make small steps.
After all the years on thyroxine my body NEEDED T3,but had a big reaction to it.The endo prescribed 40mcgs daily & no help.
I knew to start low & take it very slowly,thanks to this forum.
However,after 3 days taking 5 mcgs 3 times a day,I had an episode of tachy(palps) that would not stop.After lying flat(no pillow)for 5 hours with my heart going over double speed,my husband phoned the duty GP,who told him to take me direct to A&E.The tachy(palps)stopped after 9 hours(kept in for obs overnight)
I stopped the T3 for a good few weeks,then got T4 AS LOW as I could before starting T3 this time.No Problems!Went on to have 2 years on T3-only & could take up to 40mcgs in one dose.Took 55mcgs daily.
Didn't tell them at the hospital T3 had caused it.SO determined to keep my RX!
So I had all the outpatient heart tests again(first time 1998)& felt confident enough to try T3 again.
Courage!
You never know, when you are (personally) suffering with a "disease" of any kind what the other person may (also) be suffering from, as we all go about our lives. I see people all the time who are suffering from something? and think: "Where are the doctors?" Why is this man suffering? But, in America, you usually "know" why he is suffering because, unlike Hillary Clinton, who has a bank full of money, he, or she, may have a disease that "costs a lot of money," for treatment and he hasn't the money to get it treated, or, as so many are, he has been "misdiagnosed."
I am, after 3 straight days on T3-only considering taking some low doses of T4 with it, even though I believe it is the T4 that is causing my palps but then mine never go for longer than a minute or two. I'd be interested to know what you think: whether I should take a low dose of T4 with my T3, because, even though I fell very good on T3 alone, I still get the palps, maybe 30-60-seconds, a couple times a night?
Have you looked at the "Tired Thyroid"website?I think her research & personal experience are interesting.I am on 2 grains of NDT & will stick at this dose for 6 weeks(having already dropped my dose,as my T3 was over range)Then I will drop half a grain & add 25mcgs T4.If I can tolerate this low dose of synthetic T4 without too many episodes of ectopic beats or palps,I think less T3 & more T4,mostly from NDT might work better for me.
I was on 125mcgs T4 for 16 years.I think it often fails after long-term use,but not many endos accept this.
So, if I'm on 75 mcg's of Synthroid, what dose do you think I should take with 7.5 mcg of T3? When you say T4 fails after long term use; I took .88 mcg for 26 years with nothing but a GP, no endo at all. An internal medicine doctor, about 10 years ago told me I was so healthy I didn't need to take any medication. T4 was always, and still is, my only medicine and I stopped for a few days but started back after getting dizzy while cutting down a tree from a 30' ladder. Maybe I should have taken her advice, though, as the T4 would have still been in my bloodstream. I was diagnosed with hypo only even though the only sign was weight gain but I exercised for 2 hours daily and knew it was weight that couldn't be explained because of my lifestyle and I knew my body AND, of course, a doctor diagnosed me. BTW, how is it you can "add" T4 to NDT? I thought it came with the right doses? Do you just add a certain amount in a separate pill? I hate taking too many pills.
Why would you add T4 again, Naomi? I did well on two grains of Naturethroid and then later one grain NDT and 25 mcgs of T3. I would never go back to synthetic T4 if it affected my heart.
Studies are showing that T3 protects the heart. I posted an extract a few days ago.
I get looks from doctors many time appearing to me to be saying how is it possible that I could ever "question their "authority?" They hate the truth.
I believe some docs are threatened by educated patients. It's possible to find excellent doctors who appreciate those of us who are knowledgeable and want to be involved in our care. But they are as scarce as hen's teeth. Sometimes we have to search but when we find them healthcare is great. I only stick with docs who work with me. If I trip over one who seems to feel threatened by my participation I tell them why and move on. I guess it's called voting with our feet. I'm not rude but I feel they have a right to know why I don't want to be under their care. It may not help me but maybe if they lose enough patients (and revenue) over the long haul someday they may 'get it' and make changes. Change and educating oneself can be a slow process.
The truth is always the best, you don't have to "remember" what you said.
You're right. Low T3 contributes to worsening heart failure. Important to me as I have well controlled atrial fibrillation and am always interested in doing what I can to stave off heart failure. BTW, an interesting question would be how many undertreated thyroid patients have developed a-fib. I believe there is a strong connection. irina
There's reported 3 million patients with Atrial Fib and I would bet most of them have, or are familiar with thyroid problems. All thyroid patients are under-treated UNLESS they have found their "peace" and are clear-minded and content with their "cures."
As this daft person to explain why the body naturally makes T3 if we dont need it? Sack him and tell him why.
I still have to have a primary and an endo. I'm a vet and am going to the VA hospital next week to see if the rumors of them being less human than the private guys are true. Maybe I can find a vet doc who is also human, always a chance, even though slim.
Have always had animals and so lots of experience with veterinarians and also with vets in my family. (Dad was a WW 2 pilot in the Pacific.) I think some animal vets would make great people doctors! 5 stars for liking animals to begin with as I divide people into 2 groups sometimes-those who love animals and those who don't. Our animals were often better at evaluating people that we were. And Thank you for your service. Take care. irina (US-Atlanta-retired nurse.)
I have a sister who is a retired newspaper reporter who did the ASPCA beat for decades for the Tallahassee Democrat. She rescues, to this day, mistreated dogs and takes them into her home. "Animals" are very intelligent and, many times, are much more human than "human beings."
Just tell him that the blood tests were introduced for levothyroxine alone.
That - if we take other than levothyroxine, i.e. adding T3 into it or taking NDT, the blood tests have no bearing at all as they are for levo only.
The best way to judge if patient takes 'extras' is how the patient 'feels' on a particular dose and if fit and well with no symptoms they are on an optimum dose of a hormone replacement which makes them well..
I am paying a buck a pill for T4 Synthroid and questioned a pharmacy that quoted me a price of $22 a mont (30 pills) for NDT. Why would I not try NDT? except for neither my primary or endo will write me a prescription and only say their hands are "tied" because they are on a "capitation contract," meaning they make more money the "less "work" they do and the less referrals they make. The truth never appears wrapped in pretty paper bearing good tidings but usually, in my life, (almost) with a scythe, clothed in black satin, with a hood and blood on his hands. Many of the (so-called) doctors have a great deal of blood on their hands (literally) and it is a truth hard to swallow (no pun intended) esp by thyroid patients.
One of our Advisers (deceased through an accident) from the USA hated the fact that levothyroxine became No.1 prescription in the USA due to payments by Big Pharma to doctors/Endos. He would never prescribe it. Only NDT or T3 for thyroid hormone resistant patients.
He, therefore, invented his non-prescriptive NDT (not sure of cost) and his widow now deals with this. I shall give you a link anyway just for info plus some of his Chapters and he hated the way corruption enabled NDT to more or less fall by the wayside. Those who could not recover returned to the old-fashioned NDT. In the UK our main Association the BTA made False Statements about it, despite it being used safely since 1892 in different formss, Dr Lowe sent three yearly reminders to the Associations but they never did respond to him before his death. There is a huge difference between a humane doctors putting patients first, that climbing the ladder by following advice you feel is not to the benefit of patients.
Whereas our Association made False Statements and this is Dr Lowe's Rebuttal. He sent three yearly reminders before his death but they never did respond. Dr Lowe was a researcher and scientist too and was an expert in Thyroid Hormone Resstance.
thyroidscience.com/Criticis...
Copy and paste onto a new page thefollowing tinyurls
tinyurl.com/ya5blrr2
tinyurl.com/y7ejh9sh
tinyurl.com/ycxpz565
The Associations have hounded at least two doctors we know of - one who resigned his Licence and the other wouldn't but he was pursued often by the Authorities and appeared before our General Medical Council for treating patients wrongly. The GMC couldn't avoid the 10,000 testimonials of this doctor that his grateful patients sent to them confirming Dr Skinner 'saved their lives'. He was not afraid to prescribe but his staff and patients were devestated when Dr Skinner died suddently.
If you want other sources of NDT put up a new post and ask for Private Messages only to be sent to you. The post will then be closed as no information is permitted on the open forum.
Go down half the page to read what this doctor states about hypo.
Much appreciated for this news & thanks to you, Shaws, for your time spent. If I (ever) write a story and use this information I will (try) to make sure to credit you.
I've read both papers & thanks for the url's. I will show copies of these to some of (my) doctors & ensuing dr.'s because if they don't agree with it, they'll never be my dr. Thanks brother, interesting stuff also.
So Grateful to you Shaws for your wonderful advice and experience that you give away so generously .
Luv mx🌹
It's mainly what I've read but also as I was undiagnosed for a long time due to doctors being wholly ignorant of clinical symptoms. Neither was a TSH taken at any time so my symptoms were ignored and diagnosis must have taken about 9 years - which I did myself.
My sister is slowly dying , 69 years old .. she has lost her way with health issues , ALL related to neglect of Thyroid disease HYPOthyroid , by her doctor she lives in Canada and I’m in Scotland .. so it’s difficukt for me to get her to understand WHAT she can do
To help her become well
Shes housebound almost, with a neglectful alcoholic husband who won’t help her
It kills me with sorrow .
Her doctor is convinced she’s just a lazy woman .
She is such a sweet kind and loving soul.
I get lots of direction for her on here but she has no strength to understand it or deal with it
.....Harrowing.
You’ve helped so many ... even more than you know.🦋
Thank You .
Mx🌹
I could weep for these poor souls who have nowhere or anyone to turn too. You are so far away as well and must be so worried about her.
I am one who always relied on the info the doctor gave me. I found out, to my cost, that they knew less than the patients especially when my mother's doctor told her that her bloods were fine she needed no more B12 injections. My sister and I thought how great that was. Little did we know what was ahead, for my mother herself, but for us - her daughters and extended family. My Mum had pernicious anaemia for years.
When we are so hypo our brain cannot function properly and don't have the energy or the will - most of an age when they've never used the internet and are reliant upon doctors who know absolutely nothing - nothing at all about metabolism and how best to treat patients. Ignore or cannot do as they want to and what will benefit the patient as it would be against the 'guide' lines. Guidelines are supposed to lead us to optimum health but the ones for hypo, if levo doesn't work for us, are led in the opposite direction to a life of pain/symptoms and no energy, losing jobs, families, friends.
Dr Skinner (RIP) stated we are all in a 'parlous situation' these days due to the emphasis on blood tests rather than symptoms.
I am looking forward to Dr Skinner's data being published as his staff have been collating all of the evidence since his death.
Also to diogenes Paper.
Once to every man and nation comes the moment to decide,
In the strife of Truth with Falsehood, for the good or evil side.
Falsehoods which we spurn today, actually were the truths of long ago and anyone, including the POTUS, who trusts in lies, shall perish in the truth. The fewer of us on the side of the truth, the more clear and simple our voices must be.
Think of Jesus Christ, who spoke most often to children who could easily "understand" him, even as the "highest" of the intellectuals could not.
What’s a GP doing trying to override a specialist in endocrinologist?
Very good question.
most uk gp's think they are gods
One who knows more than the Endocrinologist and cares about patients, like Dr Skinner and Dr Peatfield and others long retired by now. Dr Skinner stated that we were in a 'parlous situation' and he was right. Before blood tests were introduced as 'perfect' along with levo we were diagnosed according to symptoms and given a trial of NDT. If we improved we were hypo and stayed on NDT for life. No blood tests, just increasing dose slightly if symptomatic.
Definitely not minding his own business.
i'd love to know where people get the mexican t3 and how much it costs?
The problem (for me) concerning anything coming through the mail is "product." And, if it turns out "bad" do you have a reputable supplier. T3 should be available to anyone who "needs it" meaning, to me, anyone who has been diagnosed with Hyper, hypo, Graves, etc. not just someone who has a prescription from "someone" (doctor) who will write one.
agreed. but when standing in fire use whats avail
it dawned on me endo might be okaying ndt (which i pay for) to keep nhs from paying for t3. my bod does not metabolise alcohol etc normally, why would it with t4?
Doctors used to prescribe NDT or T3 but these were withdrawn (NDT due to False Statements - despite its safe use since 1892 and the astronomical price increase for T3) and the person who rebutted the False Statements by the Association never got a response despite three yearly reminders for a response before his death.
Many think it is because Big Pharma has such a hold on doctors/endocrinologists throughout the world now with some sort of incentives and levo is now the world's most prescribed hormone replacement. Plus of course extra prescrips for the remaining symptoms which aren't relieved with levo or too low doses of levo. Any other thyroid hormone replacements which were prescribed i.e. NDT (in use safely since 1892) or T3 - (too expensive now) have been denied to patients who don't or cannot recover on levo (T4).
t3 availability is a no-brainer. that doctors and even specialists argue against it is mind boggling. same as canabis oil situ. t3 is about malpractice/ unprofessional conduct
I’m on 60mcgs of T3 a day and it’s given me my life back. Before that I was on up to 200mcgs of T4 only a day and felt poisoned, as if I was gradually shutting down. Your doctor has no idea what he’s talking about.
They get frightened if our TSH gets too low. Dr Lowe only took one blood test for the initital diagnosis and thereafter it was all about how the patient's symptoms were being relieved and he would never, ever have prescribed levothyroxine. Only NDT or T3.
Lowe wrote his paper, which I have copied, 9 years ago, which refutes the British Thyroid Association's absurd pronouncements of why every doctor should rely on levothyroxine only for all their thyroid patients, and slamming all T3 combinations with T4 and all NDT products also, specifically Armour, a product of Forest Pharm, in St. Louis, USA, basically slamming all products other than T4-only, and this, appears to me, even though I live in Florida, to have caused a terrible "shortage" of the product T3, or even T4-T3 combo and NDT, in Great Britain and, today, almost impossible to get a prescription for in the USA, even though endo's can prescribe it, at their will.
And so, many patients with hypo suffer for too long, before either finding the correct dose themselves (as I am presently doing, myself) or finding a "real" doctor. Dr. Lowe was a voice "crying in the wilderness," and, as usual, on this earth, he (seemed to have been, (now) crying in vain) because it appears to have only gathered more "conventional" doctors together to hold hands in "agreement," even as they write their T4-only prescriptions endlessly to every thyroid patient who walks in their door. They all agree to "think alike" because none of them have enough common sense, or character, to think alone. Scary.
I think that test results should be used as a guide and to monitor changes, rather than for a definite diagnosis (as the reference ranges are based the results from 95% of the non-hypo/hypo thyroid population sampled, and also other antibodies in person's blood can interfere with the test).
However, in your test result, the TSH is 0.11 IU/L (reference given is 0.40 - 4.50), so your TSH appears to be low relative to the general population. Form some studies, it seems that the pituitary gland, regulates TSH (via TRH) based only on circulating T4 levels (not T3), so your TSH level might suggest that your circulating T4 level is actually too high for what your body requires.
Your first Free-T4 is DNR (which I think means "Do Not Report", as perhaps there was an error in the test so it was repeated). Your second Free-T4 is 1.2 dL (ref 0.8 - 1.8), which is within the reference range based on 95% of the non-hypo/hyper thyroid population. However, 1.2dL might be still too high for what your body requires, which your low TSH suggests as explained above.
Some people have genetic alterations in the enzymes that convert T4 to T3 (so may be less able to convert T4 to T3), or changes in the receptors for T4 or T3. As you feel you benefit when to changed to reduced T4 (Levothyroxine) and starting T3, perhaps you are getting too much T4 (Levothyroxine) for what your pituitary has determined that your body needs (which might explain your palpitations and low TSH), but it might be that you are less able to convert the T4 to T3 (so benefit from taking T3). It is possible to get genetic tests for the enzymes. For example, there are companies that now do Whole genome sequencing direct to consumer, without needing a doctors referral.
Here's a good paper that explains in detail the problem with relying too much on Thyroid blood test results, and why combined T4 + T3 can be a better approach: ncbi.nlm.nih.gov/pmc/articl...
"......Because of a discernible disjoint between FT3 and TSH concentrations in athyreotic patients, this can result in an inability of T4 monotherapy to adequately address their therapeutic needs. Unlike in the healthy subject with adequate correction, FT3 levels now become unstably dependent on exogenous T4 supply. Furthermore, the T4-related conversion inefficiency may outweigh the benefits of escalating the l-T4 dose in some patients. Homeostatic principles question the isolated interpretation and disease-defining diagnostic value of TSH measurements, hence promoting both a more personalized approach and consideration of diagnosis in a more conditional adaptive context.
.......... There also may be clinical consequences and long-term risks of an unphysiological FT3–FT4 ratio, FT3–TSH disjoint, and impaired deiodinase activity on l-T4 replacement, supporting a possible role of combined treatment with T3 and T4 in selected patients with poor conversion efficiency."
I’ve shared this before but thought I’d post it again. Your GP has no idea what he’s talking about. Insert meme with captions, “doc do you read?”
Published in the medical journal, Clinical Endocrinology.
“Defending plasma T3 is a biological priority”
onlinelibrary.wiley.com/doi...
By the way, do you, or does anyone else on this website, go without taking your medications for 24-hours, before a blood-test because I did that more than once, once upon a time, just thinking it would be better, but then, was told, by my GP, to take it anytime after three or four hours, whatever, as long as you wait a few hours before the blood test and so I usually waited no longer than 8-hours.
Your GP, I believe, goes too far the other way.
The obvious peak in FT4 from ingesting levothyroxine can go on much longer than three or four hours. Usually the maximum is around two hours. And the rise would usually be steeper than the fall after the peak.
We know for sure that we vary as individuals so it is difficult to be categoric about the time to leave.
This is a very good link, Andyb1205, the problem is most endocrinologists, including mine, obviously cannot, will not or do not read anything concerning their profession(s) because, after all, they are GENIUSES, they did graduate from Medical School and expect only to see beautiful women falling at their feet, as they rake up the dinero and totally ignore their long-suffering patients: especially those wishing to be on T3 or NDT because they make more money jerking off (doing nothing.)
I went to the VA a couple of days ago and the GP there told me that he'd try to “help me,” but because I needed a T3 prescription that I'd have to drive to Tampa and see an endo, in person. I said fine and left his office. And then, he sends me this letter, which I got today, below:
file:///C:/Users/KeithG/Downloads/filename-1.pdf
The first one is a fiction he made up, I guess to justify, telling me that HE could override the VA endo that I will never see because HE knows what the endocrinology dept. does and says and prescribes, etc. I had just told him my story, the truth: that I was diagnosed and treated for 27 years with an .88 mcg T4 pill and I never had a problem for 27-years until about six months ago when my hypothyroid symptoms (re) appeared. I told him that my (civilian) endo lowered it to 75 mcg and added 5mcg twice a day T3 but, as you can see by the letter (to me), he has totally disinherited himself from anything near the truth. The thyroid panel he used to “convict” me and apparently convince any VA docs who I may appeal to is the second page.
It makes me actually feel sicker than I already (physically) am. It's very hard to say how much I have come to absolutely disdain and detest any doctor who “runs with the pack,” of (liars). And how could they not know they are lying? Are they actually this ignorant concerning Hypothyroidism? Or do they all just think alike?
Because if everyone (doctors) is thinking alike then no one is thinking (at all).
Peace
I know, I'm speaking to everyone.
I know of one doctor who told me that my T4 was too low and TSH too low and T3 too high. I said "I know doctor that is because I take T3 alone so the TSH may be low/suppressed and T4 low because I dont take any. He said "but T3 converts to T4" - I said 'no doctor it's the other way around.
Scary, but there's a lot of scary stuff ahead for anyone who has a thyroid problem and can't find a “real” doctor, a human one, with actual feelings and a heart (that works).
Scarier for me, personally, is that I really don't know what I am (now) because the hypo symptoms have returned with one caveat that of not gaining weight, despite eating more. I am pretty certain that I am T4 intolerant because the brain-fog returns anytime I take the Synthroid but not the T3. A strange thing about my T3. I take 5mcg twice a day and have those times set at 1-3 PM and 1-3AM but I have much different reactions. In the afternoon, I get a good, energetic feeling, maybe 4 hours after I take the pill but not the same reaction in the morning as, 4 hours later, usually about 5 or 6 AM, I get brief palpitations (maybe 2 or 3, anywhere from 30-90 seconds apiece.) If anybody can figure that out I'd much appreciate anyone's opinion.
One of my favorite comedians (Jimmy Durante) had a regular show (back in the 50's, when I was a kid) and, whenever he got into a “mess” he had a standard line: “What a revolting development this is?” I guess you can say the same thing for all of us thyroid sufferers, who are still “looking for the “light” way out of this dark and menacing tunnel.
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