I've been posting here for a bit over a month and have to come to a decision. Any help would be greatly appreciated. I stopped taking Levo 3 weeks ago, 23 days, and saw my endo today. My bloods are below.
Here:
T4, FREE
CURRENT
RANGE
OVER TIME
T3, FREE
CURRENT
RANGE
OVER TIME
VITAMIN B12
CURRENT
RANGE
OVER TIME
As you can see the TSH is 4.96, very high, while the T4 and T3 Free are as low as they can go.
On 7/14, while I still took T4, my TSH was a suppressed 0.11 mlU/L while my FT4 was 1.2 ng/dL T4 Total was 7.4 mcg/dL, FT3 was 3.3 pg/mL, & T3 Total was 106 ng/dL.
A very big difference. I was taking T3 at 5MCG, twice a day and 75 Synthroid. I took the Synthroid for a month, a buck a month here, and it totally ruined me, headaches & heart palpitations at night, brain fog in the morning. So, I stopped taking it, 23 days ago, & took only the 5 MCG T3 twice a day & began taking 7.5 a few days ago & finally talked my endo into prescribing me 10 MCG of T3, even as he prescribed me Levo at 50 MCG, once a day. This is app. What I had wanted him to do 3 weeks ago but he wouldn't even see me, so, as I tell him I'm taking no T4 and he, maybe, sees insurance money leaving his office he prescribes the above and, when I mentioned I'm off Levo, he said: “You are crazy, you must take the Levo, T3 will not work without T4. So, I picked up the Levo & the two 10 MCG twice a day and will start in a couple days. I want to take just T3 at 7.5 for another day or two and then take the 10 MCG twice a day. My wife was at the endo's with me and is busting my chops about not taking the Levo; she is very adamant & persuasive about it but I feel much better without T4, after 23 days without it, but am considering taking it for a couple days because it's the cleanest Levo pill they make, few fillers, no dyes. Anybody have a similar experience, please weight in, as I am stymied over this because I wish to “end up” with NDP, and, as everybody knows, NDP has its share of T4. Any comments will help me decide, believe me & thanks in advance for your time & thoughts.
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GKeith
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FT4 - too low. FT3 - too low. If we take T3 only FT4 will be low.
Excerpt from below:-
They are actually taught to ignore the patient's signs and symptoms and all the complexities of the endocrine system. They practice "Reference Range Endocrinology"; accepting any hormone level anywhere within the laboratory's reference range as "normal", meaning "no disease". They fail to understand that population ranges do not define what is optimal for our species, or for any individual. The laboratory ranges include 95% of a group of "apparently healthy" adults who were not screened for symptoms. They include almost everyone! Worse, physicians ignore a person's actual thyroid hormone levels and their symptoms and rely almost entirely on the wrong test, the TSH, to diagnose and treat hypothyroidism.
Thanks so much for your tome, thoughts & expertise. I've read Dr. Lindner before and these articles are (for patients) & "thinking" humans everywhere (only a low % of doctors would qualify) a wake-up call.
You have a choice - NDT which many recover with and prefer - is the very original thyroid hormone replacement since 1892 and contains ~T4/T3/T2/T1 and calcitonin - before NDT we went into a myxedema coma and died. It is more conducive to the human body and contains the hormones a healthy gland would do. There is also a variety of NDTs.
You have to permit a trial of the suggestions above I think, to find out what your body actually improves upon.
I have always taken one daily dose of whatever I've tried, i.e. T4 only, (felt awful) NDT, T3/T4, T3 only. For me T3 worked best and I take one daily dose when I get up and feel well. I think that's what we all aim for. We want to have no clinical sypmtoms at all.
I hope I'm making the right choice(s) because my health depends upon it. I will try T4 T3 combo (again) but for only a week, then, if I can find one, a pill with T4 & T3 in it, before T3-only, as I am presently doing. The NDT I want is very hard to get a hold of and very costly & so this takes awhile because it's very had to find a doctor who will prescribe it, much less find a pharmacy who will fill the prescription for an amount of money less than a several hundred a month.
These are three Chapters from Dr Lowe who was an Adviser to TUK before his death. I thought they may be helpful. Copy and paste the three tinyurls onto a new page.
I stopped my Levothyroxine 15 days ago (got up to 125mcg). I couldn’t take the muscular pain, neck stiffness, anxiety, feeling spaced out and like a zombie and had several headaches daily.
I tried several makes of Levothyroxine.
With each increase my good days get less and less.
The symptoms I had on Levothyroxine were the same before I started Levothyroxine. Even on a low dosage my symptoms came back.
Then I started to feel I would be better off not on this earth. That’s was a wake up call that I needed to stop my Levothyroxine straight away, that thought scared me.
My T3 results were always slow to improve.
My TSH results responded well in Levothyroxine, and my GP said my latest results were good, (all three, TSH, T3 &T4) TSH 0.24, so getting suppressed, yet I still felt awful.
I pointed out my low T3 results to my GP, and the pattern of my T3 on all my results, his response was that everyone converts T4 to T3.
I have taken the gene test DI02 this tells you whether you carry a gene where you can’t convert, I am waiting for the results.
I also have Hashimoto’s so its known that patients can’t convert T4 to T3.
I did think about trying NDT but, I suspect I have fibromyalgia, (shaws provided lots of information on this for me) for many years now I suffered terrible neck stiffness and muscle pain, before doing diagnosed with Hashimoto’s and underactive Thyroid.
This was noted on all my letters from my Endocrinologist who said it was a result of Epstein Barr Virus. My Endocrinologist gave me antivirus tablets to take for over a month, the neck stiffness didn’t improve and he had no answer.
I’ve been to chiropractic, physio and osteopath and acupuncture with no relief.
A few days after stopping Levothyroxine my bones stopped cracking, my neck pain got better and my brain fog had lifted I felt a lot better.
I decided to introduce T3 only (sourced privately) to say I feel better is an understatement, I’m not 100% yet, but my bones don’t crack, my neck stiffness has gone, my muscle pain has gone, I can think clearly.
It’s still early days but, I’m so pleased I stopped my Levothyroxine. T3 has to be introduced slowly, many patients just take one dosage in the morning, I tried this, but, my body was crying out for additional dosages, I tried a small dosage at 6am then one at 3.30pm, but, I was struggling, so I needed to introduce another dosage so I take it 6am - 11am -3.30pm.
It maybe once I increase my dosage more I will not need 3 a day. Yes it’s a pain taking 3 dosages but, if it makes me feel better than I have no problem doing this.
I’m currently reading Paul Robinson recovering with T3 (brought from Amazon) this have been a very good book to follow.
In this book he advises that only introduce one change and keep a record of your pulse rate, temperature and blood pressure. If we make too many changes at once then it will be hard to find out what is causing a problem if we have one on T3.
He’s not a GP/ Endocrinologist he is just writing from his own experience.
Ultimately you have to do what makes you feel better, regardless of what your Endocrinologist thinks.
Thanks a lot for your generosity and your story. I am almost positive I will suffer on any T4 but, because of my wife, will take it (once again) at 50 MCG but not for very long (1 week max, 1 dose minimum) if it does as it did last month. I really hope I can find an endo who will give (prescribe) NDT, so I can at least try it before going through more brain fog, palpitations & headaches but ... we will see. Thanks again Peanut 31.
Please don’t take offence at this, but, if you feel so bad on T4 then I wouldn’t even take it if my husband told me too.
I’m am much better as a functioning wife and mother than a zombie on T4 just keeping someone happy.
My son even asked me if I was seriously ill (dying) and not telling him to protect him, that broke my heart and I know I had to do something, hence me stopping T4 as I wasn’t getting any better and he could see this as well.
Even if my GP or Endocrinologist told me to take it again I wouldn’t.
It’s how you feel.
Good luck on your journey
Best wishes
Peanut31
Hey GKeith,
Were you on Synthroid and T3 from the start initially (you said you took Synthroid for a month only)? When were you diagnosed? What dosage did you start with or did you increase to 75 t4 and 2 x 5 t3 over time? When you stopped Synthroid, when did you feel better? How do you feel now? When exactly did you start experiencing headaches, palps etc. when you started Synthroid?
Two things - a good amount of t4 would have left the system at 3 weeks mark, but it's on average 35-days when it does fully and changes all TFTs according to a study I read the other day (I can post a link if you like).
Another - for me, anytime I increase/decrease I have awful symptoms for weeks, just saying in case it is the same for you.
I personally think that the best way of treating is: initially trying t4 only and see how you get on after 6-8 weeks, sometimes it does take a few solid months to see the difference. Next step is NDT or combined t4 & t3, again few solid months and then t3 only if nothing works out.
Thanks for your history, time and thought. I began on Synthroid maybe 26-27 years ago, around 1990, '91 but the pharmacist changed it, almost immediately, to Levothyroxine and I took it forevermore: up until last month, when I took it for a month & (barely) "lived" through more headaches & heart palps at night, while waking up to brain fog in the morning. I quit it & took some old Levo, which didn't work either. When I was first diagnosed with hypo, the doctor prescribed me .88 MCGs of Levothyroxine & that dose was never changed for 27 years, until my present endo took it down to 75 MCG &, now, to 50 MCG & 10 MCG of T3 twice a day. I know this Levo pill at 50 MCG only is the "cleanest" they have, it's white, with no dyes & I will take it before my nightly dose, maybe 2 hours beforeas I feel that would make up for the half-life of 12 hrs. for the T3, but I won't take it for long. Too bad a reaction and I will stop it forevermore (this will be the third time).
First, Dr Lowe would never prescribe levo as he said it was introduced through corruption (i.e payments in kind I believe). Even though T3 has a 'half-life- once it is in the T3 receptor cells its 'effect' lasts between one to three days. I can vouch for that myself too as I missed two days.
I myself will never take levo again - I suffered just as much on it than before I was diagnosed and TSH was 100.
This is from Dr Lowe who was an expert in T3 use:-
"You asked, if we don't have T4 receptors, "then why do we need T4 supplementation rather than just T3 alone?" With rare exception, we don't.
No one can rationally defend T4 supplementation on scientific grounds. I say this because the widespread use of T4 supplementation is not based on scientific studies that show it to be safer or more effective than the use of T3 alone. Instead, its widespread use is the result of a financial venture between the endocrinology specialty and corporations that profit from sales of the most commonly prescribed brands of T4.
Our long clinical experience shows that in general, patients respond far better to T3 alone than they do to T4 alone. Moreover, our safety monitoring of patients shows that the responsible use of T3 alone is as safe as the use of T4 or T4/T3. By "responsible use," of course, I mean employing the same precautions that are appropriate to the use of any thyroid hormone product.
As I am well on T3 I will never take T4 again. Just recently my doctor said he will no longer prescribe T3 - due to the cost to the health service it has gone up to £600 per pack. We used to have one supplier at a much less cost so we were excited there were going to be two others and were shocked that they all appear to charge the same.
Of course it's extortion and there's no question that it has been going on for decades, if not longer. The pitiful thing being that there are so many doctors who actually "believe" that T4-only is the only way that "benefits" their "patients." Of course as soon as I mention the money they are making, they simply clam up. Many of these "doctors" brainwash themselves that they are "doing the right thing," knowing all along that they put blinders on because they are benefiting so much monetarily and "go along to get along," with the Big Pharma, the insurance companies & various medical associations who benefit so much from the lies that keep these conglomerates in even more money than any human being, let alone these lying conglomerate lawyers, should ever have.
I have no thyroid gland (RAI 35 years ago), so I'm as hypo as you can get without some form of medication. Over the years I’ve tried everything known to the medical profession, and can state the following: synthroid (t4, levothyroxine) is a very poor way to treat the problem, as it is mainly useful for the doctor, who then toggles it with the totally meaningless TSH value for his/ her convenience, without regard to symptoms or more subtle blood work results such as reverse T3, which can totally subvert your T3 levels. Your doctor’s comments about the necessity for T4 are ASSININE and reveal a total lack of understanding about the thyroid mechanism. T4 is not an active hormone, but only functions as a storage hormone for the purpose of producing the active hormone T3. If you supply your body with adequate T3 you do NOT need any T4. I am on T3 only now, and since I have no thyroid gland I have absolutly NO T4 and am functioning fine. I assume you do have a thyroid, so must be producing some T4 on your own, so what’s the “need” to add more? It’s only a question of experimenting with dosages of T3 to supplement the apparent shortage for your particular body, resulting from poor conversion of T4 to T3. But everything should be based on your clinical symptoms, not the lab numbers that doctors are trained (indoctinated?) to use.
Helenca, thanks for your story, your knowledge and your precious time, which we are all allotted only so much so much of. I am hoping and praying that I find a doc who will find me some NDT at a reasonable price and a comfortable dose to live with, without having to experiment for months to find the right amount. Peace be with you.
Hi GKeith, as you feel that stopping the T4 has helped you, perhaps the next logical step is to try T3 only. However I think you’re saying you’d like to go onto NDT. In that case do it. No-one knows which will suit you until you try it, so you may as well follow your own instinct, it’s your life that will be impacted by this decision, and NDT May make you feel well. T3 is quite tricky to adjust for many people. Personally I find NDT preferable to T4 only but I need T3 too, I think because NDT doesn’t have enough T3 for me, but T3 only doesn’t seem to work for me either. We all have to find the right balance for us as individuals. You are more likely to have an instinct for what will work for you, than anyone else. Be bold! Make a decision and try it. Good luck x
Aurealis, ahah, sounds like a gladiator. I am, as I have said, going onto NDT asap and sincerely hope that it will work for me. If it doesn't I will experiment with T3, add a little to the NDT (if I need to) etc. & thanks for your story and precious time it takes to write it.
I just kept an appt. with my endo & he added Ferritin level checks for my next blood-test, 5 more weeks. What was your amount on NDT & what happened. Why can't you get WP, if it worked so good?
Sorry I haven't time to read all and certainly big novice, but read how levo affected you and it designated as I was awful on levo until I supported adrenals and then I felt enter and the horrid symptoms lessoned some, no I can tolerate levo
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Update - Thyroid Test Results Requesting Dosage Increase
