Is there anyone out there on T3 only? I can't take levo it makes me worse, I have been taking Armour for years, it helped but there were still problems, I am now in severe pain every day, I feel desperate, my TSH was in normal range at last test, my T4 for 10.1 with range 11 to 22 and my T3 was 5.7 in a range of 3.1 to 6.8. I was shocked at the T3 reading as I have felt for a long time that I am not converting. I can't get rt3 test, what does it show anyway? I have been offered steroids for RA which my endo thinks I have as opposed to Hypothyroid. However I have ordered the T3 myself to give it a go as I really believe it will help but I think I need to take it on it's own, is anyone else out there doing this?? Also I have never taken steroids but am tempted for some relief from the awful pain and inflammation?
T3 only as treatment: Is there anyone out there... - Thyroid UK
T3 only as treatment
You may feel worse on Levo because you're not taking enough. I felt well on Levo for many years but only with entirely supressed TSH, below the reference range. I now take mainly T3 but have been unable to give up Levo completely - there is research that shows that T4 (as in Levo) has a unique role in the body, over and above as a thyroid storage hormone. Sorry I can't give you the link to this. From my reaction to cutting it out, in me, it's needed for brain function. So be careful if you go T3 only, in case you're like me. But many people can go T3 only. I've never had a rT3 test. I needed T4 above the range when on Levo and T3 at top of range on combo. We are all different, but good luck.
Thanks but I increased levo to 200mg and felt awful, decreased it and felt awful. Having read all the threads on here I can see how different everyone reacts to the different hormones, I just hope T3 will help me as I have nowhere left to turn! 
Yes it can be tricky. Just because you've been up to 200 doesn't mean you've tried enough but if it felt too much then it probably was. T3 is far more difficult to get and keep stable in my experience. So I'm just suggesting you exhaust all other options first - although you may need just a little bit of T3 to feel a lot better. Sorry you're having such a difficult time. Have you tried supplementing with selenium - it aids conversion
Thank you, I really appreciate what you are saying but over the last 15 years I have tried levo so many times, i really wanted it to work as it is free on prescription but i always felt far worse! I have been buying armour thyroid from USA for years but never really felt it was quite hitting the spot, still falling asleep at the drop of a hat even whe talking to people! Anyway the main reason I have been prompted to look at something else is the excrutiating pain! I have to find a solution!! I will get the selenium tomorrow, thanks I do eat lots of brazil nits also! Thanks again, i love this forum as we all know how each other feels! 
Have you considered an adrenal problem?
I also have pain all over and although I know I still need to get the right dosage for thyroid, that's no good without the adrenals working as well. you might find the steroids help you no end as they will perhaps supply the cortisol needed for thyroid meds to work and replace what your bodies not producing anyway.
I began on Levothyroxine in 2009. My dose went as high as 200mcgs but i got no relief from my Hashi's symptoms whatsoever. For the past two years I've been taking T3 only in the form of Cytomel, which I have to order from Mexico.
I monitor my pulse and temperature and take 75mcgs a day split into three doses. It has given me my life back!
I can't say whether or not it would work for anyone else but I know it's saved my bacon. I've also just sent off a saliva sample to a private lab to be tested for whether or not I have a deiodinase conversion problem. Hope this helps,
Jules
Hi Aurealis, Sorry I may of misunderstood this, but are you saying that our bodies "do" need T4? I was under the impression that it didn't need it because I only converts it to T3, and has no use. Have I got this all wrong.
Accunatang, you can get a private rT3 test from Genova thyroiduk.org.uk/tuk/testin... It can take 2/3 weeks to get results as the sample is send to the USA for analysis.
The only way to tell whether you are better suited to T3 only is to try it. Your FT3 is good but some people don't tolerate any sort of T4. If you do have a build up of T4 from NDT it can take 8-14 weeks to clear so you need to be prepared to wait for improvement. If you can wait that long to see whether the pain subsides you may be able to avoid steroids.
I prefer T4+T3 combination to T3 monotherapy as I like the 'security' of T4 being in my system for conversion should I be unable to take T3. I can't tolerate T4 monotherapy which made me ill including all over musculoskeletal pain.
I used to get all over muscoskeletal pain on too low a dose of Levo
Thanks for the link to the test, I suspect my rt3 is high, I have been doing more research into the rt3 and low T3 at cellular level and it all seems to fit with what is going on with me. My endo is only giving me 6 weeks to see if T3 works, I am assuming that even though it takes a while to adjust, I should start to feel slightly better over the weeks? Or is it just a better feeling at the end of the 8 to 10 weeks? My body seems to react within days to me changing the dosage or from Armour to Levo, I recently changed back to levo but was so much worse within 4 to 5 days, which is one of the reasons I suspect no T3 at cellular level. I will check out the tests but if they are expensive I won't be able to afford them unfortunately! Thanks for your help
Acunatang, we all react differently and at different rates. I found mental acuity improved within a couple of days of adding T3 to T4 but my physical symptoms didn't improve at all. It wasn't until I had been off T4 for 10 weeks and T3 for two weeks that the physical pain and other symptoms started to improve and completely resolve within a week, apart from fatigue. Resuming T4 saw palpitations and breathlessness back within hours and tremors within 2 days but adding T3 calmed it all down. Don't let your endo trial T3 for only 6 weeks, insist on 3 months at least.
If you do have high rT3 then you might find (when you first start T3 only) that low doses of T3 actually make you feel worse. I had severe memory problems (much, much worse than my usual brain fog) and I found it hard to walk. I was staggering around all over the place, and could only walk outside by hanging on to my husband. I couldn't drive for a while because of it.
The only solution I found to my problems was to raise my dose faster than recommended. (I am definitely NOT recommending this as a course of action anyone else should try!) I couldn't cope with the idea of staggering while I walked for weeks on end, nor did I like not being able to remember 80% of my vocabulary, so raising dose seemed to be my only choice.
I eventually went hyper and was never able to tolerate high doses of T3 again. I came off thyroid meds for a while after the T3 experiment, then tried NDT, and now I'm back on T3 only again. I'm managing to do okay on very small doses of T3 now, so I have no regrets.
There are lots of different opinions on what to do about reverse T3 - here are some of them :
stopthethyroidmadness.com/r...
Thank you, as you say we are all different and I think I need to try it and see, I'm glad you are feeling you have it under control now. Thanks for your help, I will keep an eye out for low dosage problems, I have to do it myself anyway, as I have had to buy it, my endo strongly advised me against buying my own but he has agreed to monitor it and if the symptoms have improved greatly he will give it to me on prescription but he thinks I have RA!
You might find this useful. PR
Q&A Doctor Series: Thyroid Resistance, Introducing T4 Medication, and Free T3/Reverse T3 Ratios (Answer by David Borenstein, MD)
I take t3 only. I was unable to tolerate Levo. My Tsh stayed the same will I still had symptoms. I started off at 20mcg per day split into two doses. Then when I was wakeful late at night I started doing the circadian method of taking a small dose a couple of hours before waking and going back to sleep. I spaced the dose out during the day into 4 doses. I now am on 3 after 18 months. Start on a small dose try it split into 2. See how you feel. Then after a couple of weeks increase. Monitor your pulse.
As for steroids. If I could I would take them all the time. I know that you are not supposed to and should not. My elderly Uncle who had to take them for years now has a terrible skin disease as a result. But if it is just in the short term to try and ease the pain it may be worth a go.
I have only taken them twice. Once after a dental implant and once for a dexamethasone suppression test. I felt great in both instances. Haven't taken them since.
My memory function and general all over well being is better on t3.
It is strange if your Doctor is monitoring you an knows that you are on t3 that they won't prescribe it. Not unusual though.
Carrots
Thanks for that info! I am not taking it yet, I have ordered my first lot and am waiting for them to arrive, my endo only agreed to monitor me because he wouldn't prescribe it to me because he doesn't think I need it, and is worried I will go hyper, but I have done a lot of research and I truly believe it will help, I will try your way of dosing, thanks very much! I'm sure it will take a lot of trial and error to get it right but as long as I feel on the right track that's all that matters!
Could it be an adrenal problem? Genova Diagnostics do an adrenal function test. Some doctors like Dr. Sarah Myhill and Dr. Peatfield believe that this can be a major problem, and I have read that this may be the cause for a T4 into T3 conversion problem. It may be worth looking at Dr. Myhill's website (search for adrenals, adrenal dysfunction, hypothyroidism) and/or her book 'Diagnosis and Treatment of Chronic Fatigue Syndrome'. Dr. Peatfield's book is also worth reading. His earlier book is as a fully licensed doctor and treatment includes hydrocortisone. His second book was written after he had handed back his medical license and includes alternative non-prescription medication. There is also other books (mainly American) on adrenal fatigue. I believe Dr. Myhill's treatment consists of DHEA and hydrocortisone (I have no personal experience with these medications, but I think there are quite a number of posts on HU on this issue, too). She (as well as Dr. Peatfield) also emphasises nutrition, vitamins and supplements. I have just seen the mainly good reviews on Amazon for two books on nutrition and Thyroid: Izabella Wentz's book Hashimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause - she's experimented with food/nutrition with apparently good results. It's quite an expensive book and I'm not sure if it's worth buying but you can look into the book on Amazon. As 95% of Hypothyroid sufferers apparently suffer from Hashimoto's disease, which is an autoimmune disease for which they are not always tested or told about by their doctors, Susan S Blum's book may also be of interest: The Immune System Recovery Plan: A Doctor's 4-Step Program to Treat Autoimmune Disease. Please note that I haven't read either of them (yet), only the reviews, and the latter one is on the reading list on the Thyroid UK website. I hope this helps.
Thanks, i do need another adrenals test, but at the moment I need the T3 to help the chronic pain which I believe it will! I will get fresh tests on everything else after! I have read Peatfields book and refer to it often! I am a naturopath and acupuncturist so have everything else nutritionally and supplementally to encourage and support my thyroid! Thanks very much for the info there is always more to research on this condition! I will get to the bottom of it if it's the last thing I do!!
I have just had an appointment with Dr Peatfield and I have suffered 12 years on t4 he has taken me off t4 for 10 days and then I will start on adrenal suppliments and then resume some t4 and other thyroid meds. My daughter was diagnosed with ME at 14years she is now 19 he has started her on adrenal suppliments she has already started to feel better after 5days, my other daughter is also feeling huge difference after only taking for a few days . I think you should consider looking into the adrenal issues and there are many other issues to look at . If you can I would think about making an appointment with DrPeatfield and then you can be sure of doing things in the correct order . I was told if your adrenals weren't working correctly then your thyroid couldn't work to its full potential . Lots for you to think about. Good luck.
Thanks for that information, I would like an appointment with Dr Peatfield but I assume it won't be cheap so I must plough on with my own attempts plus all the advice I get on here which is greatly appreciated! Thanks and good luck to you, you are definitely being guided by the right person, I wish you well
I found Dr Peatfields information and details on Thyroid advocate patient site . His charge is £175 for 1 1/2 hours You can cover a lot in that time. I'm not on commission by the way , just overwhelmed at the treatment I received . I actually paid to see him with what should have been my gas and electric bill money, i am now paying that in installments as I have very little income due to this illness but I had got to the point of no return and I would do it again if I had to . Take care all the best
You've probably also looked into pernicious anaemia & vitamin B12 deficiency, tried high dose sublingual B12 & Vit. D as well as magnesium salt baths or Biocare Magnesium EAP and D-Ribose (all recommended by Dr. Myhill, whose book and website I thoroughly recommend as it takes a much broader view on ME and the immune system). This may be of interest to you: I've just got an email notification that there is a new ME Myalgic Encephalomyelitis Community on Health Unlocked:
... healthunlocked.com/meandcfs...
I sincerely hope you get to the bottom of it and wish you all the best!
Thank you yes, I am ok on B12, no pernicious anaemia, I take B complex, high dose vitamin D, high dose Magnesium, CoQ10 with Carnitine, St John sWort, probiotics. I also have regular salts baths, sometimes Epsom, sometimes Himalayan. I use a Magnesium spray every day which I spray on the most painful joints and take a Himalayan salt solution drink every morning. I eat lost of mineral rich nuts like Brazils, Sesame seeds, Almonds, Pecans, Sunflower seed and Pumpkin seeds as well as mineral rich vegetables. I also make my own Kefir and Kombucha to keep my gut in check, sometimes take Milk Thistle to give my liver a boost, sometimes Aloe Vera too, I use Aloe Vera externally for achy joints plus Arnica gel. In the summer I make a super green juice consisting of anti inflammatory foods such as Kale, Celery, lime, cucumber, ginger and turmeric and drink it every day! I feel my health in other ways is stable if only I could sort my thyroid! I have to say though it has been k for a long time while taking Armour but never spot on, but maybe going through the menopause has made it problematic in the last couple of years? Who knows?
Well it seems that nutritionally you are doing everything! I'm interested in making Kombucha - is it difficult?
If you don't have candida or dysbiosis/leaky gut it may be worth checking out the adrenals. Genova Diagnostics do an adrenal profile which would give you a good idea - both Dr. Myhill and Dr. Peatfield recommend this test, and in her book Dr. Myhill explains the results of such a test. On the Thyroid UK website there is an offer that you can order the test directly at Genova Diagnostics and have them sent to TUK who then send it to you free of charge, as otherwise UK rules stipulate that Genova has to send the results to a practitioner who will probably charge for this (or else they can recommend a practitioner). I know that Dr. Peatfield diagnoses the clinical symptoms of adrenal fatigue/insufficiency, so you might perhaps not necessarily need a test if you consult him. The endocrine system is interlinked and both the menopause as well as your adrenals could affect the thyroid. I know there are books on balancing hormones but have not read any of them. I'm no expert but Dr. Myhill (and Dr. Peatfield when he did still prescribe prescription medicines) prescribes cortisone in low doses and advise on a hormone cream for the menopause (they are not really keen on HRT prescribed by the NHS although I have met women who say they are doing well on certain brands). If you look at Dr. Myhill's website and also on Stop the Thyroid Madness website & book they mention that patients could try out the 1% hydrocortisone cream which is absorbed through the skin to help their adrenals if their doctor is unwilling or unable to prescribe cortisone to see if this makes a difference. This cream can be bought over the counter at the pharmacy but you have to be aware that you cannot put it on the same spot on the skin for more than a week as there is a danger that the skin may become thin, so you'll have to keep changing where you apply it. For dosage see Dr. Myhill or STTM website & book. There may be people on this website who have experience with this. The other option is to try and use adrenal support such as Nutri Adrenal Extra (which Dr. Peatfield also prescribes) and see if this makes a difference. I think there are also other adrenal support medications available (see e.g. Nutricentre or Your Nutritional Shop) and people on this forum may have experience with these. One last thing may be D-Ribose. Perhaps you've tried it already. Again, I have not tried this myself but Dr. Myhill (as well as a number of US doctors and practitioners) recommend this as a good energy booster.
With regards to muscle spasm I seem to remember that Dr. Myhill writes in her book that this can be caused an imbalance of calcium and magnesium (i.e. too much of one or the other) and explains why.
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