I have been on T3 only since 20/4/18 so 3 months. (Ditched Levo)I have felt so well on this. About 80% normal. (I don't have a thyroid) Which after all these years is exciting. However, I cannot get past 15mcgs daily. I saw my Endo after a disastrous attempt to do the CT3M Method to reset my adrenals which set my adrenals off madly. But there may be more to that story because I found out that my TSH was 78! After having it at .07 ish for ages. He has prescribed Hydrocortisol 20mcgs for 2 weeks then 10mcgs for a further 2 weeks. I have been able to raise my T3 to 25mcgs with the steroids. It would appear that my adrenals are weak. I have the saliva test here but have not taken it yet. Has anyone else gone on steroids and was this just a few weeks or did you find that you needed it forever? Do the adrenals get better? Should I be on NDT instead? Or would I have similar problems? On Levo I was not converting, so had a relatively low T3 but was able to suppress TSH? Sorry there are so many questions here.
T3 only. Feeling distressed.: I have been on T... - Thyroid UK
T3 only. Feeling distressed.
I know many try to fix adrenals but I also know of another doctor who stated that they 'fix themselves' as thyroid hormones are increased until we're on an optimum.
I also know why we have to try 'this and that' as some things suit some people and not others. It is trial and error and be quite distressing when we don't seem to be improving at all.
Doing a trial of NDT might work for you as it has all of the hormones a healthy gland would have but it is also trial and error too but might be worth it. It can be quite exhausting trying to figure out (when the Professionals cannot) what will help to restore our health.
One of our Advisers (deceased) always took a blood test for the initial diagnosis and thereafter took no more and it was all about relieving symptoms by slowly increasing dose until the patient was symptom free. He would only prescribe NDT - never levothyroxine. He also prescribed T3 for patients who were Thyroid Hormone Resistant. He took one blood test for the initial diagnosis and thereafter it was all about relieving symptoms.
A couple of links:-
web.archive.org/web/2010112...
p.s do you take one daily dose of T3?
Hi Shaws,
Thanks so much for your reply. I am so brain fogged right now, I had trouble reading the links. I shall try again later as I could see they were important. My endo is ready to give me NDT but wanted to try T3. He's concerned I may react to NDT similarly? We didn't expect to reach a blockade with the adrenal glands. I am just so brain fagged out trying to understand everything. I am truly overwhelmed by it all at the moment. I was doing well until not being able to increase the T3 past 15mcgs. That is why he prescribed the HC. I take T3 now (past 3 days) 7am 10mcgs, Midday 10mcgs, 8-9pm 10mcgs. Before I was splitting the doses to 6 doses a day and taking vitals, I just lost the plot during the CT3M method which tests then revealed the TSH of 78. So I think the idea is to get my TSH suppressed before all else. I'm must so scared to be on steroids.
Dr Lowe, now deceased was an expert on T3. He always insisted patients took one daily dose. He himself took 150mcg of T3 (middle of the night) due to being Thyroid Hormone Resistant - which means our T3 receptor cells have difficulty in absorbing it.
He recommended one daily dose and I know there are various 'viewpoints' but as Dr Lowe was also a scientist and researcher everything was researched before decisions were made.
Levothyroxine is T4 only (I am sure you know this) and it is an inactive hormone. Some convert it to T3 but some cannot do so effectively and I am one as T4 makes me feel very unwell.
Dr Lowe states that we start on a dose of T3 and it is a once daily dose. We start on the initial dose and every 2 weeks add an increase and so on until our symptoms are resolved. The T3 has to saturate all of our millions of T3 receptor cells first and then it starts to send out 'waves' which can last between one to three days for that one single dose.
Many doctors and endocrinologists make assumptions about T3 i.e. it isn't as long-lasting etc etc. But T3, in our T3 receptor cells I know it lasts more than one day for me as I had to miss one day and I didn't have unpleasant symptoms. The most important was that I felt well, symptoms resolved.
The once daily dosing means we are 'free' because splitting doses means we have to have an empty stomach before taking it and allow an hour at least before we eat after dose. Also T3 receptor cells aren't flooded to enable T3 to work effectively.
web.archive.org/web/2010103...
web.archive.org/web/2010103...
My TSH was 100 before I diagnosed myself as no doctor or specialist even thought I may be hypo. So that, in itself, was a huge learning curve that one of the most common of autoimmune conditions was unknown through symptoms which was always the criteria before blood tests were introduced to make things 'easier' - maybe for doctors but certainly not for very unwell patients. We look to the medical profession to know all about the commonest form of autoimmune conditions. It comes as a huge surprise they know no symptoms at all, whereas before blood tests that is all they had to go on. At least your Endo is trying is best due to the restrictve guidelines they have.
Oh Gosh,
Thanks Shaws. This is a new one on me, so because I am overwhelmed I'll need a bit of time to sort it out in my scattered head. I have poly glandular auto immune, which means I have anti bodies to everything basically. So your hypothesis is probably true. How did Doctor Lowe feel about HC as a temporary treatment?
I cannot answer your question about HC but am sure Dr L would start someone on thyroid hormones immediately and that was either NDT or T3 only never levo. I think if you go gluten-free it may well help reduce the antibodies that are attacking your body at present.
I am not medically qualified but those who have more knowledge or had an experience like yourself will answer too.
One day dosing is much more preferable as it's bad enough to take hormones for a lifetime but we want a simple and easy way to take them and feel better.
Your Endo is wrong about splitting T3 as they imagine it gives us a 'rush' but it isn't like that. I have never felt over-stimulated - the first thing was my heart settled (heart and brain need the most T3) and awful palps ceased completely. I think my heart was working harder to try to deal with less hormones rather than being a symptom. If Dr Lowe took 150mcg daily without overstimulation it shows how calming it can be in our body.
Hi Shaws,
Thanks again for all your replies. It means a lot to me. I feel very alone right now. My Endo did start me 3 months ago on 20th. April on T3. 2x20mcgs. I began straight away (no gap between stopping T4 and starting T3) 5 days in I became what I thought was overmedicated. But now believe could have been adrenaline bursts. I titrated back (with advice from here not my Endo) and introduced it slowly but couldn't get past 15 mcgs without these adrenaline feelings. This is why after 3 months my TSH was measured last week at 78. I couldn't take the large amount. Respectfully, Dr. Lowe (who I have knowledge of) must not have had adrenal issues. I have a rare adrenal disorder called Primary Aldosteronism Hyperplasia. I produce too much Aldosterone. I am medicated. I have been hospitalised so many times with it. I don't know if it is impacting on my ability to cope with T3, but something is. I would love to just take a big dose once daily. But I cannot. I cannot give up on T3 it gave me my brain back, I was diagnosed 3 years ago with a cognitive deficit. That's all bunkham I'm doing my PHD now. Though my brain has seriously left the building again. I asked my Endo on Friday to please give me another chance with T3, it is then that he gave me the HC. With having no thyroid I am at the mercy of outside hormones and drugs.
Having no thyroid gland at all is a handicap, so you have to do what suits you to try to restore your health. If you were already taking levo before you began T3, you would have some still in your body as I think it takes a while for T4 to gradually reduce and as I am not medically qualified you have to do what is instinctive and I hope you improve soon.
Hi Shaws,
Yes it is a real handicap. I wish I knew I had a thyroid problem before the Goitres grew over my gland and pressed on my windpipe. Maybe I could have saved it but despite being a virtual cripple I was of course not diagnosed. Still a year after my TT I discovered through having an Endo that I did indeed have Thyroid antibodies! Der!
I don't know my T4 reading till next weeks GP visit but it's been 3 months. I do appreciate your help though, it's such a lonely difficult journey.
Your T4 will be low as you don't take any.
The more informative blood tests are Free T4 and Free T3 and you will see the reason on the following link. The frees are rarely tested. I am really sorry you are having all of these health issues and we feel stranded but your Endo is trying. Is there another T3 the pharmacist can provide - is it the fillers/binders in yours as T3 itself is 'orthomolecular' :
medicinenet.com/script/main...
Try taking one anti-histamine tablet one hour before the T3. If your body doesn' doesn't have a reaction it coud be the fillers/binders in the T3 that affected you.
thyroiduk.org.uk/tuk/testin...
I was on HC for about 2 years. Then weaned off very slowly. But, I cannot imagine that four weeks would do much good. Still, you won't know until you try. 
Hi Greygoose,
I am wondering what it can achieve. Perhaps he's just trying to get my T3 up as being on 15mcgs a day for 3 months must have left me depleted of T3? So were on HC for those 2 years to support your adrenals to help with taking T3/T4 or NDT? Also if you don't mind me asking, how did it help you? I feel dreadful. I am so weak and shaky.
Sally56,
I have not read all the replies yet. TSH responds to t4, not t3, so your pituitary is telling your non-existent thyroid to produce more. Since you don’t have a thyroid and you are not taking t4, it does not matter what your TSH is. Those 2 are a feedback loop. Thyroid supplementation is more how you feel, than the latest test. Test result trends can be important also.
Sorry, but so far as I understand, the pituitary responds to both T4 and T3.
Yes, TSH is definitely affected by T3. I need only look at a bottle and my TSH takes a nosedive.
Hi Kell-E,
Thanks for replying. So you believe T3 medication does affect the TSH? Just clarifying from a fogged brain.
Yes. Here is a link that shows both T3 & T4 affect TSH.
Hi Helvella,
I am so mixed up now. Should TSH be an issue then? I only began to feel bad once I tried doing the CT3M method and for 5 days took my first dose of 5 mcgs at 4 am. By the third day I was crazy. I believe it was my adrenals and cortisol, I had prevously thought that it was overmedicated but the Endo thinks I am undermedicated, I have not got my T3 results yet, I don't know if he was working from them or my TSH or my feeling bad? I need a spare brain, this one can't cope.
TSH going very high is an issue. It indicates that you are under-dosed. (Or, but this does not seems relevant, have a tiny tumour which is pushing out TSH regardless.)
As others have said, I sincerely doubt you are taking adequate thyroid hormone.
The documentation for Liothyronine tablets usually says that 60 micrograms a day is a typical dose.
Thanks Helvella,
I will just concentrate on getting this HC taken each day and my 30mcgs of T3. Once I am stable on these medications I shall see my Endo again and see what he wants me to do. I have learnt a fair bit today. My big take home is I am incredibly undermedicated and that is the urgent presenting problem. Thanks again.
Hi Eliotf,
The Endo was concerned about the TSH going from .07 to 78. I feel terrible. I don't know why anymore. I am just confused. My Endo is progressive at the same time being a Professor. He uses NDT, T3, works on adrenals, all the things that you want in an Endo. He was alarmed by my TSH?
T3 is approximately 3 times as potent as Levo (T4). So your 15mcg T3 is going to be similar to being on 45mcg Levo. Since you have no thyroid this is totally inadequate, probably dangerously so.
Some people claim T3 is 4 times as potent as T4, so your 15mcg T3 is going to be similar to 60mcg Levo. Again, dangerously inadequate for someone without a thyroid.
It's no surprise that your body is screaming out for more thyroid hormone. Your pituitary (which produces TSH) doesn't know that your thyroid is missing, and so it keeps pumping out more and more TSH asking for more thyroid hormone from your missing thyroid.
Many doctors dose us according to the TSH but this is another point of view by a Hormone Doctor: excerpt:
You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose.
They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. It's simple common sense. TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy; your physician must treat you according to symptoms and the free T4/free T3 levels.(this doctor is a hormone specialist)
hormonerestoration.com/Thyr...
He suggests that testing the Free T4 and Free T3. This is from the last link:
"Many studies have shown that TSH-normalizing T4 (levothyroxine) treatment leaves many persons with low free FT3 levels and residual signs and symptoms of thyroid insufficiency (Saravan 2002, Samuels 2007, Baisier 2001). In a landmark study, four experienced thyroidologists adjusted levothyroxine doses according to clinical criteria only (symptoms and physical
exam). When these patients were tested heir TSH levels ranged from <0.01 (suppressed) to 20mIU/L! Only the FT3 level correlated well with clinical euthyroidism. (Fraser, 1986). Such a study of clinically-guided treatment has never been repeated. Allre search in the thyroid literature is based upon the assumption that a "normal" TSH, with or without treatment, means that the
patient is "euthyroid"--has perfect thyroid sufficiency. All that research is confused and misleading and must be
reinterpreted. Thyroid "specialists" can be conversant with the literature and yet still not know what they are talking about.
Hi Shaws,
Thank you for all that information. I read some of it. I am too foggy to understand at the moment, but will revisit. My Endo does treat according to how you feel, he is very progressive. He has a lot of patients who are on this forum. He told me. But I think the undermedication indicated by the very high TSH was a concern. He also gives me LDN which my GP lifted her brow at! He is a Professor and listens very carefully. I have taken information to him before but he is usually way ahead of me. I guess I'm saying I do trust him. But I will always take advice from here to him. He's always happy with that. It was his idea to go T3 only.
You are very fortunate and If you didn't get his name from TUK, email his name to Dionne @ TUK. Email below:
tukadmin@thyroiduk.org
humanbean is correct. I will add that I am not a doctor. I have had my thyroid issues since the mid 1990’s with continuous adjustments due things like ssri, chemo and other things. I personally think you should still take t4 as it probably does a lot more than we know & it will help balance out the t3. T3 burns hot and fast. My endo told me that t3 should be taken a few times a day. T4 lasts a week in your system. Each organ takes t4 and converts it to t3. Each organ use a different amount of t3& t4
Hi Eliotf,
I am so reluctant to take T4 again as I felt so bad on it. My Endo did mention NDT though. I take the T3 3 times a day 10mcgs each time.
I definitely wont take T4 again. Some of us feel far more unwell especially if it doesn't convert to T3 as it is supposed to do.
Hi Human Bean,
Yes I think this is where my Endo is at. I am now on 30mcgs of T3 a day. (I am tolerating it because of the Hydrocortisol I believe because before I would have been climbing the walls) So using your calculations approx 3 times levo that equals about 90mcgs of Levo. Before I was on 100 of Levo a day. But although had great TSH. I was not converting and had a very high T4 and a mid range to low T3. So yes I agree this was not a good situation but I felt fine? (Until I did the CT3M thing). Thanks for the explanation of why the TSH is high and the pituitary gland, I understand that now. I am wondering how long it will take to get me back up there. Yet another endurance test. Yikes!
I am now day 5 of 20 mgs Hydrocortisol and increased T3 to 30mcgs. I feel a weird adrenally (may not be) rush type thing. I am on full charge hyper-vigilant. I have conflicting info and I know it's not all one size fits all, but I am struggling physically and emotionally. I rang and spoke to my Endo and he doesn't know why I am having this reaction, but advised me to sit with it until next Monday. I can take valium and propananol to ease the symptoms and this is helping a lot. I have had these kind of feelings/sensations before and it took a long time to get over them and for my body to calm. ANy advice, wisdoms, words of support? I am so confused and fed up.
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