At the risk of causing inflammatory reactions I picked up my prescription for a trial of T3 (which my GP agreed to give me at my request) and saw that the suggested dosage was 1 x 20mcg every other day. My current dose of Levo is 150 which I plan to stick to - does the introduction of T3 sound a little big to begin with?
Advice on T3 dose : At the risk of causing... - Thyroid UK
Advice on T3 dose
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Do not start on a new regime until you know exactly where you are on the old; re TSH, FT4, FT3. Only then can you begin to judge how to fine-tune down T4 against introduction of T3. It's a gradual, exploratory process, and it will take time to find the best outcome.
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Plus you don't take T3 on alternate days, you take it every day. Starting dose is usually 5mcg daily, then 2 x 5mcg daily, increasing by 5mcg at a time.
Thank you
SeasideSusie, when starting or changing exogenous T3 why not start at 5 microg or 2.5 for a couple weeks and see how the body responds to the new treatment modality. With a much shorter half-life and the more directly accessible - powerful T3..... I don;t understand the rush in making or introducing major changes so quickly.
SSusie are you seeing people starting T3, feeling better for a couple or few weeks and then feeling worse - when they feel worse they are told to increase T3 again, they feel better, then feel bad again and are told to raise their T3 AGAIN...and again
Steni, if you don;t have one, a pill splitter might be a good purchase.
Small changes, over weeks
UCSFDAB
I didn't receive notification of this reply addressed to me as you responded to Steni's post not mine so she/he would have received notification.
SSusie are you seeing people starting T3, feeling better for a couple or few weeks and then feeling worse
This question makes me wonder if you think I am a medical professional. This is a patient to patient forum. Are you connected to the medical profession in any way? Your username seems that it may indicate something to do with the University of California San Francisco.
I see that Greygoose, in her post welcoming you below, has asked some questions that you haven't answered. I'm sure we would all be grateful if you could take the time to do so.
Maybe you would also like to fill in your profile, it's always good to have a little background information about our members and why they're here.
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Never take different dose on different days. That just underlines that GP is completely out of their depth. Essential to take exactly same dose every day
Very important to have very good vitamin D, folate, ferritin and B12 before starting T3. Also if you have Hashimoto's then strictly gluten free diet likely to help as well
As SeasideSusie says, start on just 5mcg per day, in morning on empty stomach.
Only increase to 10mcg (2 x 5mcg, split dose am and pm) after 1-3 weeks. Then hold at that dose for 6-8 weeks and retest all bloods especially FT3 and also including vitamins ideally
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Yes I think he may be a little out of his depth but he’s extremely willing to help and hence his agreeing to the trial - so many doctors I read about on this Forum are so difficult and unpleasant. I’m really not concerned about his dosing advice as my plan is to work out what to do myself following good advice - which I have had of course. If the trial works he will write a private prescription and I will obtain the T3 myself, at least that’s what I think at the moment.
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Your post from 3 months ago shows you were under medicated on 125mcg.
healthunlocked.com/thyroidu....
Was dose increased to 150mcg and have you had blood tests on that higher dose?
Couldn't see any vitamin test results in recent posts
Yes I increased my dose to 150 - still no relief or indeed change in symptoms - vitamin results were not shown but I do have them and will post when I return from holiday.
Do you have Hashimoto's? Diagnosed by high thyroid antibodies?
I do , yes
So are you on strictly gluten free diet?
Or tried it?
Ideally ask GP for coeliac blood test first
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
Be careful with T3 some people are very sensitive to it. I can't even handle 2.5 mcg you are talking about 20? Try a quarter to see how you feel and slowly increase.
I saw your post of 3 months ago when on a dose of 125 mcg levothyroxin you were obviously very undermedicated, yet had good conversion of T4, and advised to up your T4 dose. How much T4/ levothyroxin did you need to get your FT4 over range, and what was your FT3 then? From personal experience adding T3 to T4 is not an easy option, levothyroxin is so much easier to take and monitor with blood tests than T3. Repeated tests showed I was a poor converter of T4 to T3. I started off on 1/8 th of a 25 mcg T3 pill, slowly increasing the dose to twice a day and upto one 25 mcg a day a month later, but I had decreased my T4 down to 75 mcg. 6 weeks later on this dose, my bloods tests showed my FT3 had decreased, FT4 gone down over 10 points and TSH very suppressed...so now adding T4 back again. A slow process; I have also tried taking doses in different splits throughout the day, and night; recorded basal temperature, Bp and pulse.... not a very successful approach for me, but then I am still not optimal.
Damn ! I was hoping this would be a strait forward move 😂. Well my plan at the moment is to keep Levo at 150 for stability ( best not to change everything) and add 5 mcg of T3 daily. Or I could wait till my holiday is over and get bloods done before adding the T3. I’ll have to think about it a bit.
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I would agree with Judithdalston T3 is definitely not easy. Two different hormones to decide on dose of. Timing of when to take T3 dose is also very individual.
I also started on just 1/8th tablet and increased cautiously. Felt better and much worse in equal measure for many weeks. This dispite being strictly gluten free for 2 years prior to starting and excellent vitamin levels for over year beforehand
If you have hidden gluten intolerance then you very likely need to address this first. You do not need any gut symptoms to still have significant gluten problems. Hashimoto's and gluten intolerance often go hand in hand
DIO2 gene test is another consideration
Where you also taking Levo when you added the T3?
Sorry hijacked the question since relevant to both of us: take all T4 with half T3 as wake up about 5.30-6.30 am, then go back to sleep, then the other half of T3 afternoon 3.30-5.30 pm- this depends as when I ate my lunch , and had supplements that need to be taken away from other meds/ food/ drink , and how much exercise/ activity I've done that day earlier. I like having some flexibility as don't take my 'meds' out with me if for eg shopping, yet don't have to rush back to take them, or set clocks etc. I wouldn't be able to fit 3 doses of T3 into my lifestyle.
I agree with Diogenes, but you've not given your sex, age, or BMI and all these factors strongly influence your needed exogenous dosage over time. I would recommend the smallest introduction you can manage because your body can easily be put into a reactive state that begins to dump excess exogenous hormones and that route take you straight to crazytown.
In fact, I recommend you use caution, these are among the most powerful substances in your body; passionate attachment to any advice is a cautionary warning. I also suggest looking up the Turkish study of normal, as opposed to abnormal thyroid and TSH levels. We are slowly working toward a .66 to 1.66 TSH goal to promote well-being. Slow, small changes,,,
good luck Steni, I hope you find your way to the minimum dosage that brings you a healthy, more satisfactory life.
Please could you post a link to the Turkish study - sounds interesting - thank you ...
here is the abstract - the larger study indicates a narrower range dependent of age, sex race and in our literature review - BM as evidenced in several studies and nest summarized in the the Argentinian study. It Appears to us that this site has an unnecessary bias toward over medication. (Hence the wildly aggressive response to posts suggesting symptoms may be a response to over medication and resulting dumping of exogenous T4 and/or T3)
Please explain what you mean by "unnecessary bias"? The corollary of the existence of that concept is that there is such a thing as "necessary bias", isn't it?
The paper to which you refer has this sentence:
The data for TSH in the study group were not normally distributed according to the Kolmogorov-Smirnov index.
Given the extensive literature on TSH levels which comes out absolutely firmly against TSH being in a normal (Gaussian) distribution, it perplexes me that they wanted or needed to apply the Kolmogorov-Smirnov index.
Doesn't diogenes rather undermine the utility of population TSH ranges as applied to individuals? Rather, suggesting that the individual range is narrower than the population range.
greygoose
I think the 'bias' of this site, if 'bias' there be, is towards the patient getting what the patient needs, neither over- nor under-medication. And that this be judged on how the patient feels, rather than blood results in an arbitary, man-made range based on dubious population-based testing. Whether such a 'bias' is necessary or unnecessary is debateable. But I hardly think necessity comes into it, where 'bias' is concerned.
I have noted what apoears to be a 'bias' in terms of the suggestion, based on wide-ranging test results, that an increase in hormone is warranted.
When someone posts tests results, seemingly, no matter how low/suppressed the TSH result, if they report hypo-like symptoms, they are almost always encouraged to request an increase or, if they've taken their treatment into their own hands, to increase the dosage themselves.
In fact, having read hundreds of posts and replies, I have yet to see the suggestion that, despite hypo-like symptoms, it is possible that overmedication is the problem.
Yet, I have read accounts of people lowering their hormone intake and achieving positive results, on other sites.
One reason decreases might be necessary is that treatment has actually bern successful, rendering the patient better able to metabolize the exogenous hormone than was possible in a significant hypothyroid state.
But the body's mechanism(s) for ridding itself of excess thyroid hormone (dumping or excretion), thereby leaving one with insufficient free hormone does explain the phenomenon of feeling better after a dose increase, only to feel worse shortly thereafter.
This concept is written about by Dr. Alan Christianson in an ebook called "Healing Hashimoto's: A Savvy Patient's Guide".
In my opinion, disregarding the TSH test results is not ultimately anymore constructive than relying on them exclusively.
Again, I, as most of the persons on this site, am not medically trained, and can offer only my opinions and intuitions, based upon my anecdotal experience as someone diagnosed with Hashimoto's.
Well, we tend to take more notice of the FT3 than the TSH. So, I suppose you could say we're 'biased' in that way. Although I hardly think that 'biased' is the correct word to use.
So, Dr. Alan Christianson, author of "Healing Hashimoto's: A Savvy Patient's Guide" says that the notion that we can ignore the TSH results, and rely on the free levels of hormone is misguided. He writes that the body's first response to overmedication is to stop producing thyroid stimulating hormone. But, he suggests that, if the hormone levels are too high, the body, via the liver, kidneys, etc. will actively excrete the excess. This can lead to hypo symptoms despite being overmedicated!
I cannot recommend this ebook more emphatically, especially to anyone who has increased their dosage, repeatedly, with the result of still feeling bad or worse, feeling worse.
drchristianson.com/wp-conte...
I hope the link works for anyone who's interested. And I hope the information is helpful!
ncbi.nlm.nih.gov/pubmed/240...
dergipark.gov.tr/download/a...
Is this the article?
Oooops ! - financed by three Drug companies - is that good or bad ?
UCSFDAB
Thanks Marz,
In my experience most company financed studies would evidence the reverse conclusion found in this study. Company funding sometimes can demonstrate a bias toward the targeted patient population needing a Higher ongoing dose of their medication. When attempting to establish a normalized range of TSH - the capitalistic motivation of a drug manufacturer would generate a bias toward the need for greater exogenous dosage and suppression of TSH to the low levels ( < .3 ) reflected in some of the results posted here. Greater exogenous treatment leading to greatly decreased TSH levels in hypothyroid population.
Then again. international studies are typically less expensive, less referenced and have less corporate oversight than domestic studies, but have other challenges - like in this study - I;m curious whether Turkey has iodized salt because of the biochemistry of the T4 - T3 - RT3 levels of D1 and D2 diodinase levels and action in higher iodized developed countries.
As with all bulletin board commentary and especially in this frustratingly complex and individual situation - the goal is to offer solace, understanding, and suggestions that might apply to that individual's situation and hopefully contribute in some way to her/his well-being.
thanks for your considered response Marz - not many people investigate the money behind the message. To answer some of the responses my post generated and to put forward my primary biases.
1. My primary bias is toward using Occam's Razor or the "law of parsimony") is the problem-solving principle that the simplest solution tends to be the right one. When presented with competing hypotheses to solve a problem, one should select the solution with the fewest assumptions. Many of us have health conditions that have nothing to do with our Thyroid.
a. I mentioned a bias on this site and that bias is the same in all single focused bulletin boards. For instance, if someone with hypothyroid starts taking diuretics and has lower leg cramps - think sodium chloride and potassium chloride deficiency, not an terribly complex micro-nutrient or mineral related hypothyroid complication.
2, I am also biased toward using the braille method (you can't speed read braille, you have to feel your way along ...bump after bump) to offer some small contribution, idea, reference or perspective to advance the well-being of the poster.
a. No one here really knows anyone's true situation given testing levels and a few details and history. I am not attached to my advice given to others, nor that of anyone else offered in a chatroom.
b. We all (me included) need a higher dose of humility in the face of what can seem an impossible situation at one time and manageable at another. This is especially true when posting to people that are new to this world of hypothyroid. Go slow, go easy with people desperate not to feel alone and helpless.
I appreciate the work of the site administers who responded below. Their work is largely thankless. So thank you.
After reviewing threads - I saw many suggestions to increase exogenous thyroid hormone therapy. My orientation is making small slow adjustments toward finding the minimum dose that yields an acceptable level of well-being. I saw fourteen suggestions that the poster might be over-medicated and all those suggestions generated reactions and posts impugning the suggestion that someone might be taking too much exogenous T4 and or T3 regardless of knowing their age, sex or BMI. To repeat, my bias is toward slowly introducing changes and maintaining those changes for some time to determine how an exogenous dose increase or decrease influences to your state of well being.
To everyone reading this post, I wish you well on your journey. I mean no offense. It's not a sprint, but a marathon and some of us hit a wall... early, some hit it later, and most of us hit it repeatedly. Great sprinters make lousy marathoners.
We all need encouragement and we all have a bias toward looking to alleviate our own suffering, and some, like the administrators here, have the motivation to try and help others. In the world I inhabit I will suggest their are few, if any ''quick fixes'' in the incredibly complex situation we face.
I'm tired - so I'll say goodbye to you Marz, and to the administrators below best wishes and thanks again for the considered responses
" I;m curious whether Turkey has iodized salt "
Hi UCSFDAB, welcome to the forum.
passionate attachment to any advice is a cautionary warning
Can you explain what you mean by that, please? It seems a bit obscure - remember, hypos suffer from brain-fog!
It Appears to us that this site has an unnecessary bias toward over medication
Why do you say this? I don't remember seeing anyone recommending over-medication. Can you give any examples? And, who is 'us'?
I'm a little unhappy about that Turkish study. It said it excluded anyone with a known history of thyroid problems, but did it take any measures to make sure that the remaining participants didn't have a thyroid problem - or a pituitary/hypothalamus problem, come to that? And, assuming that all the participants had 100% healthy thyroids, etc., don't you think it's a mistake to compare euthyroid people to hypos? Their needs are completely different. Diogenes can attest to that. Assuming that a hypo needs the same level of TSH as a euthyroid person is one of the biggest mistakes doctors make, and keeps the patient sick.
Hence the wildly aggressive response to posts suggesting symptoms may be a response to over medication and resulting dumping of exogenous T4 and/or T3
I honestly can't say I've noticed any wildly aggressive responses to posts - and I don't think the responses would be the cause of dumping of exogenous T4 and/or T3, more likely to be caused by over-medication. But, I don't get the point of your sentence. Is dumping of exogenous T4/T3 a bad thing? And does the body actually do that? If so, how? This interests me because we've recently had some discussion on this very subject. So, I'd be grateful for more information on it.
I am loving these posts but haven’t a clue what’s being discussed !
If anyone can absorb and précis the content for us less erudite members - please do.🤔
I wish I could answer that question, Steni. But, as the instigator refuses to answer questions, I'm afraid I have no idea. Except that he has a lot of criticism for this forum!
Agreed me too!
Basically, from what I can understand of his flowery language and misuse of words, he's only saying much as we usually say : start low, increase slowly, take care not to over-dose. He doesn't have anything new to say, but constantly implies - in a very condescending manner - that we get it all wrong. But, he doesn't explain why he thinks that. I asked him, several times, he just ignores me. I therefore conclude that he doesn't know as much as he pretends he does.
I much prefer simple plain English! I’m not uneducated or a medical professional but complicating something very simple means many on here don’t understand especially as many of us suffer with brain fog.
So thank you Greygoose 😊
I suspect you are correct - The only thing I do notice that he mentions is that people often do advise higher and higher doses of Levo -presumably because these are considered necessary but does the poster have a point?
Without knowing exactly which cases he's referring to, it's impossible to say. He's just making generalised accusations without any back-up. Have a look at this :
Can I ask Steni if your Endo has previously authorised a prescription for T3? Or has your GP just authorised it?
Only asking as I thought CCG guidelines was that only a specialist ie an Endo could prescribe this. My GP would give it to me but the hospital have blocked any Endo’s prescribing T3. Thanks
Hi,
So I just went to my doctor (making sure I chose to see the one who I know is very nice and helpful) and said that as a friend of mine had privately done a trial of T3 and found that she gradually felt back to normal, lost weight, and looked wonderful could he agree to an NHS trial for me after which I said I would be happy to pay for the T3 myself if I found it helpful. He says he was happy to write a private prescription without charge and leave it to me to obtain from the German pharmacy my friend uses. I cashed in the script and then thought how much shall I take as what he had written seemed a bit high in reflection ( 20mcg every other day) though I did take that for 3 days with no ill effect. I then posted on here to see what others thought a good starting dose might be and as you see have had lots of advice. As a result I am now going to get some tests done and after posting them try out the T3.