The wisdom and wit I have found in the posts on this site have been an invaluable resource and comfort to me since I was diagnosed with Hashimoto's a little more than one year ago.
Increasingly, I find myself scanning posts for numbers and accompanying terms such as "mcg", "Levo", "ndt", "t3", and "t4", in an attempt to cull the data to discover "optimal" dosages.
Before any of the more insightful and experienced among you remind me that there exists no such universal dosage, what I would very much like to know, what I am practically desperate with curiosity to discover is the dosage (in exact and specific terms) taken by anyone whose TSH is under 1 and above .4 and who has experienced a prolonged (6 month or more) period of well being.
If you would be willing (assuming you exist) to include the length of time it took you to achieve this ideal state, I would be so grateful words could not express it.
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roxanaleah
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We are all so individual and what works for one of the 75,000 members here may not work for you .... I am sure you have often read here that it is how you feel that is key.
I have just re-read your post/thread of 7 months ago. How are your levels for B12 - Folate - Ferritin - VitD.
Can't help thinking you are pondering the impossible ...... ☺ Others will be along soon with their thoughts and solutions ....
By "pondering the impossible", are you suggesting that there might not be a single person, amongst all the viewers/ posters on this board, who meet the two criteria (TSH between .4 and 1 and a general feeling of wellness for 6 months)?
Because, despite the fact that the dosage which produces such success for someone might not do similarly for me, I would like to know, unequivocally, that well-being is possible; that a light exists at the end of the tunnel. And my natural curiosity would also be satisfied by hearing about "optimums" and the length of time it took to achieve them.
Journal articles indicate an average time of approximately one year to arrive at a euthyroid state from diagnosis. But studies rely on TSH results, not an individual's sense of wellness. And we know the TSH test might be the single least reflective, least informative, and least helpful of all the laboratory tests ever conceived.
Many of the postings here are, understandably, inquiries (as is mine) and many are commiserations, also understandable. Only very rarely do we read raving success stories. And I would really like to just about now.
The people with raving success stories are not so prominent on this Forum - they are busily getting on with their lives. If you read my Bio you can read my edited journey ! I take both T4 and T3 and was diagnosed with Hashimotos back in 2005 at the age of 59. I have blood checks once a year just to keep an eye and especially the nutrient levels - but mostly go by how I feel. I find it is how I eat that affects how I feel
I have all copies of all my test results going back for 13 years - but at this moment do not have the time to wade through them in order to answer your question as to when my TSH was such and such and how long did it take to become well. Life is too short to stuff a mushroom It is still VERY early in the UK - most people are still not up on a weekend - I live in Crete and we are two hours ahead. People will soon come along and answer your questions ...
A general feeling of wellness is relative - I felt so improved when starting T4 back in 2005 - but that was only compared to my life before - struggling with a family - a career - running a business - Crohns - endless surgeries . Now I am even more well. Thyroid recovery is a journey - sometimes it goes smoothly and sometimes with a few bumps
Roxana, an optimal dose is indeed very individual and there is no universal dose and treatment. To add to the complexity of the matter, what has worked as a treatment, for someone and for years may no longer work and the person starts looking for an alternative such adding T3 to T4, switching to T3 only or NDT. You'd also find that some need higher doses during winter and less in summer. The variance continues to expand for one person and within a group.
As for the TSH reference, you may perhaps find some within your indicated range and you'll also find more with a suppressed TSH and much lower than 0.4.
The duration by which one reaches their optimal dose also varies. I started on NDT and it took me two years, for example, to reach my optimal dose and I continue to finely tweak the dose and the timing of the two doses that I take every 6 months.
Several indicators point towards the optimal dose. The main one is how you feel and the levels of T3 can make a huge difference and some begin to see a reduction in their cholesterol levels, blood pressure, weight loss, less puffiness, sustained energy levels etc.
If we factor in the formula, antibodies, and vitamins and minerals levels, and adrenals issues, this will elevate the complexity and individuality to even higher levels. B12, Vitamin D, ferritin levels, taking magnesium, B1, etc..are also variables that can make a difference.
In spite of all of that, there are common denominators that put you in the right directions. To name just one, with Hashimoto's a strict gluten-free diet along with selenium lower antibodies. Several recognized authors have written about Hashimoto's and widely, for example, Dr Izabella Wentz documented and shared her journey.
Hi there. I agree completely with your words about the wisdom and wit of members of this site. It really is a wonderful forum.
I won't write a lot, but just to say that my TSH was at its "best" level of 0.5 when I was taking 250mcg levo, but I felt worse on that than I ever have! I now take a combination of 150mcg T4 and 40 mcg T3 and my TSH is suppressed. I feel much better than I did than just on levo alone, so for me the TSH value isn't a very good indication of how I'm feeling. I hope you find something that works for you. For me the thing that has helped the most is T4/T3 combination, a vitamin D supplement and a sugar free diet.
I am grateful for your response as well as your willingness to get super-specific.
I am blessed, here in the States, with a naturopath doctor who is amenable to much experimentation on my part. In the past 9 months, I have tinkered, too dramatically and too frequently, with my dosages.
Although your dosage and mine (75mcg t4 and 5mcg t3) are different, the point I glean from your information is what I learned months ago, on this site: many people, even most people, seem to feel better with some t3, whether in the form of natural dessicated hormone or synthetic.
Another member conveyed a dosage in which the t3/t4 were in a 1/1 ratio.
I applaud and admire women finding what works for them. And it is my great hope to do the same.
I sometimes think we, each, have a mantra...something like "I want to help" or "I am a leader", etc. If I had one, it would be, "I want to understand". It doesn't apply to all aspects of life, but where it does, it really, really does! And this whole issue, especially, hacking the proper dosage to achieve thyroid hormone balance has caught my attention. It's like a puzzle whose solution holds the promise of healthy living, if you know what I mean.
I can sympathise completely with the tinkering problem! I've been diagnosed for over 20 years now and have to confess I still haven't found quite the right thing for me, although I certainly know what doesn't work. Adding T3 definitely made a huge difference to me, although I know there are lots of people who do well on T4 alone too (we rarely see them on here because they are happily getting on with their lives).
I have lots of ups and downs, but it's great that you want to understand and are motiviated to keep trying to find the right thing for you. I think it's the hope of finding the solution to that puzzle that keeps me going too.
My experience is limited compared to many here but I would suggest that were there such a concise answer to your dilemma, then there would not be 75,000 members (thank you Marz ) on this forum desperately seeking (and finding) the means to improve their poor state of health.
By our very existence we are all individual complex creatures, not clones, we all experience a wide variety of symptoms which variously cause havoc in our lives...we all suffer in different ways and learn to cope in different ways. There is no one simple quick answer/treatment... and to look for one is sadly unrealistic. I might suggest that most of us, as we started out on our journeys to find recovery harboured that idealistic dream! In truth, we read, we study, we follow advice, we experience trial and error and throughout all that we learn to understand our bodies and how they work and how what we feel reflects our actions.
It is a balancing act and to achieve success takes patience, determination and time as well as knowledge and hard work. To turn around, in six months, what may have been decades of ill health would be for many people tantamount to a miracle!
I have had underlying health problems for the last 40 years - always convinced my metabolism was the root cause but never finding a GP to take me really seriously. I managed to hold things together (at least in public) until I could no longer keep going. Finding this forum has provided advice which I have closely followed and support from people who actually understand the issues involved - neither of which I'm sad to say were available via the NHS route. Very slowly I am improving and I anticipate that will continue. You might take this as a positive!
I am 72 and not prepared to accept my age is to blame. I have a husband who has supported me through very dark days, I have a family and 2 lovely little grandchildren whose growing years I wish to share with fun and play. I owe it to them to work towards better health.
Despite my earlier comment I have huge admiration for the NHS and it's dedicated staff and have first hand experience of the miracles they can perform. We would not have our precious (now healthy) younger grandson were it not for their expertise after they discovered he was very close to death as a result of a very rare heart defect.
But, I digress...
A list of numbers on a test report is not the definitive answer but merely a guideline....the true test result is how we feel. I suspect finding that both routinely and satisfactorily coincide is rare.
Accept all this, if you will, and trust and listen to the kind, generous and knowledgeable people on this forum who give up their time freely and without judgement in order to help others. If you do accept this and put in the effort required then you will see light at the end of the tunnel...but don't expect it to be shining on a sheet of test results alone!
Your response conveys a sense of acceptance, even while you suggest it.
I was cruising through life until the autumn of three years ago when I suddenly took very ill. I lost 20lbs (a stone and a half in your parts) in a few weeks and I only weighed 9 st to begin with. Every day I grew afraid of the scale as I watched my body disappear. I was drinking 25-30 glasses of water per day and relieving my bladder every few moments. I developed a yeast infection and a staph infection and no matter how many times or ways I searched the internet with my symptoms, the only match was Type 1 (juvenile onset) diabetes. But I was 48 years old and I hadn't visited a doctor in nearly a decade.
So, before I died, I was diagnosed with Type 1 diabetes (it's all about autoimmunity, Baby!). My Hba1c was 15.9 which is over 22 in the U.K.!
I took my first injection of insulin on the last day of 2014. Learning to manage multiple daily injections was a challenge but far better than the alternative. I radically changed my diet and it's been fairly smooth sailing.
During a routine visit, a little more than one year ago, my diabetes specialist ordered the ever-lovin', god-forsaken TSH test and I boarded a new rollercoaster, ever since.
The thing is, and this is just a funny aside, that most people wouldn't know, managing a condition, by injecting a hormone, multiple times a day has proved to be a (sugar-free) cakewalk, compared to deciphering this thyroid hormone code.
"Acceptance" is what I did with the Type 1 diabetes. With "Hashimoto's" thyroiditis- whatever the heck that is!- all I wanted to do was figure out my dosage and go on with my life. Acceptance hasn't occurred to me.
It has now, thanks to your thoughtful comments. The 'acceptance' journey starts now.
Following your move to this site I guess you are already well on your way to better health. It will happen! The folk here will keep you right...just trust them and be patient. I tend to spout hot air which probably helps me more than any reader.... they on the other hand offer advice and practical help!
Also...my apologies! When I was ranting away in the early hours I didn't realise you are in the States so my references to the NHS were neither helpful nor necessary!
Why, specifically, under one and over 0.4 for the TSH? The TSH is irrelevant once you are on thyroid hormone replacement. And, only ignorant doctors insist it isn't! The important number is the FT3. The TSH has nothing to do with how you feel. It doesn't make you feel anything.
ResearcherUK listed a number of variables which affect our speed of recovery, another one is the length of time you've been hypo. And that is pretty much impossible to know with any accuracy. However, the longer you've been hypo, the longer it will take to get well. And, of course, we have to figure in the level of competence of our doctors - most of whom are pretty useless, and can delay our recovery by years! In the beginning, I had an endo that insisted I wasn't getting well due to my 'negative attitude', and wasn't interested in adjusting my dose of levo. She was followed by a GP who insisted on keeping my TSH at 9.5! Absolutely no chance of improving my condition with either of those clowns!
I think I was hypo since I was a child, judging by symptoms. I was diagnosed at 55. It then took me about 12 years of getting worse and worse, to discover that I can only be well on T3 only, because any form of T4 makes me ill. How much irreversible damage was done during all those years? And, therefore, will I ever be completely well?
And that brings us to another variable, namely, the difference in different brands of levo, NDT and T3. You might be very well on one brand, but have bad symptoms on another. Or you might find that one is stronger than another, and have to adjust your dose accordingly. Plus the fact that your thyroid might further deteriorate with time, so you have to continue to adjust your dose.
So many variables, and so much obstruction from the medical community, makes it very difficult to answer your question, unless someone is very, very lucky, and gets it right first time. I imagine there are such people, but not on here. We wouldn't be on here if it were that easy. So, for the rest of us, it's all trial and error. And, unless we keep scrupulous records - which most of us don't - knowing if we fit all your criteria would be just about impossible. But, I know for a fact that I don't!
However, if you changed your question a little, and just asked : does it ever get any better? Then the answer is yes. For the majority of people, yes it does, and you have to hang on to that idea, but not get fixated on TSH results and lengths of time. Because that is unrealistic. Just believe there's light at the end of the tunnel, no matter how long that tunnel might be. And no matter how long it takes you to crawl into the light, you'll get there one day, be sure.
Sorry I can't answer your question with any more precision than that.
I am thankful to be well on liothyronine alone. I now have no clinical symptoms, palpitations or otherwise which were absolutely awful on levothyroxine as well as feeling far more unwell when first diagnosed with hypo with a TSH of 100.
Unfortunately none of the doctors/specialists diagnosed me but a first aider. That's when I found Thyroiduk.org.uk before this forum began and I started to slowly, slowly to find a way forward and and to lean that there are options - even though not divulged by the medical profession.
I don't care too much about my hormone levels as I feel well and have energy. I get a yearly blood test.
I'm 'optimal' and have been for about a year now. I never pay attention to my TSH but it is 0.05. I am taking 4 grains of nature-throid and it took me around 2 years to get well with lots of ups and downs. I also take a range of supplements. Obviously as you know, what works for one doesn't work for another and some folk have other health issues (apart from IBS I've no other health problems) but for most people there is light at the end of the tunnel 🙂
It's an unfortunate fact that once someone has lost their thyroid, they've lost a key part of the mechanisms by which thyroid function worked automatically in health. What replaces this beautiful delicate control is a crude alternative of taking something by mouth. Far from the easy immediate supply by the gland direct into blood, hormone taken by mouth has to compete with food taken, stomach acidity, intestinal absorption before it ever gets into the blood to do its work. And T4 is more susceptible to these influences than T3 is. Also of course, there is a fundamental difference between the smooth production of hormone by the thyroid on demand, and the crude periodic dosing by a pill. Furthermore, loss of the thyroid gland means that some direct T3 production is lost, and if taking T4 only, body conversion of T4 into T3 has to up its game to cope. For a lot of people on this forum it can't be done satisfactorily and that is why they are here and are in need of T3 supplementation very often. There is also the problem of the time taken between onset of disease, diagnosis and treatment. In the interim, the body is desperately battling to keep things going as well as possible by drawing down T4 more and more to keep T3 levels up as gland function declines.This means changes to the body's working to achieve this, and coming in with T4 say at a later date can be difficult in trying to get the body back to what it was in something like health. There is also the fact that as time passes the body's mechanisms stealthily change. In health these changes are easily taken care of automatically but of course with therapy direct changes have to be made by the patient themselves feeling less well and having to do something about it. Added to the basic fact that even in health we achieve it differently, one can understand what a huge effect losing the control one had when healthy has on attaining some degree of health on therapy. It is difficult even for those on T4 only, quite often and must be more difficult still for those on joint T4/T3 or T3 only.
Yours is such a thoughtful and even poetic response.
As someone who was diagnosed with Type 1 (juvenile onset!) diabetes at age 48, I am familiar with the 'balance' and 'beautiful control' our organs exhibit and the 'crude alternative' produced by the exogenous administration of synthetic/natural hormones.
I think every word you wrote was accurate. Still, I long to hear stories and details from those who are successfully managing this confounded condition, as least crudely as possible!
Specifically, when I read about dosages that are far greater than that which is produced naturally by the thyroid gland, I wonder if the 'dumping' that Dr. Alan Christianson mentions in Chapter 3 of his ebook called Healing Hashimoto's is a factor.
That puts me in mind of starting a new thread to inquire of the "greygoose(s) [would that be greygeese?]", "clutter(s)", "seasidesusie(s)", "helvella(s) and "marz(es)" of the world their opinion of this concept.
Thanks Roxanaleah for starting this discussion — very interesting and helpful perspectives. I hear your frustration at how long it can take to find the optimum dose. I’m traveling that path myself, 22 months and counting. These kinds of discussions with Long-termers sharing their experiences and insights to recovery I find especially helpful. Thanks, and wishing you well. On we go!
I was diagnosed hypothyroid in Dec 2006 with a tsh over 100. By July the following year I was on 100 mcg of t4. For two months until the September I had found my sweet spot with a tsh of 0.5 something. I would waken with a smile and jump out of bed and was so happy all day, went to bed and slept the best sleep I had ever had and it was like that for nearly two months. After that I just went downhill and never got that feeling back. I started to feel worse and by 2011 I got an appointment with Dr Skinner in Glasgow and started t3. I have been on that since but have never felt 100 %. Maybe 80 at the most but just accept that. Jo xx
Hi, I didn't do anything differently and I just began to feel dreadful. Tired, weepy, lethargic and just generally just quite ill. I did improve a little and could never raise t4 to over 100mcg.
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