Just a moan - I’ve posted a few times about trying to adapt to T3 only treatment. I was feeling very overstimulated with a pulse of 140 on exertion, high BP breathlessness and the return of a sense of dread and anxiety. This was on 50mcg T3 in split doses of 1omcg. My TSH was 0.8 and T3 about 4.4 (mid range. So feeling generally unwell and sorry for myself. I see a private endo who is leaving the UK unfortunately and about to be picked up by an NHS Team. Tried reducing to 40mcg plus 25mcg T4 but that was still sending me bananas. So endo suggests 40mcg T3 only split in 20, 10, 10 from today onwards until I’m reviewed. I love the energy and cognitive clarity of T3 but my poor old wreck of a body cant hack the over stimulation. Since adding in the T4 I’ve notice a gut wrenching anxiety in the morning and some bleak hopeless thoughts (which i assume is hormonal and not depression) I’ll see how i get on on 40mcg but it been quite hard to get dose that seems to work for me. Just kind of sad about my journey on T3 but that could be hormonal? - Sorry that was thoroughly self indulgent.
PS my great GP did and ECG and booked me in for a cardiac review - so it’s a reassuring that’s in place and my endo emphasised that it was preferable to be underdosed rather than had cardiac issues.
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Hashiboy
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Are you sure that you are underdosed if your tests show your levels are not high enough for optimal (see Stop the Thyroid Madness website)
The reason I mention it is that our symptoms are all very individual and for me a forgotten T3 dose (ie low levels) cause palpitations feeling weak etc.l, which on the face of it seem like signs of too much. Just because it is on a list of signs of too much T3 does not mean that it is for you.
Hi there, I don’t think so AKatieD , it’s a bit up and down, at the moment I’m having the mother of all panic attacks after my morning dose. . But I’ll check out the Thyroid Madness Website. Think it might be the end of the line for my T3 only journey but don’t fancy levo either.
Btw I take 125mg daily as 2x50+ 25 (no T4) and my blood test results are still within range. I am not suggesting that would be right for you, just showing you that there is quite a range of suitable doses.
25mcg of T3 is approx equal to 100mcg of levothyroxine - in its action.
Dr John Lowe, scientist/researcher took T3 himself. He was also an Adviser to TUK before his death due to a bad fall that caused his demise.
I follow his method that resolved my symptoms and he stated that one daily dose saturated all of the T3 receptor cells and then sent out 'waves' throughout the day.
I am sympton-free on a dose of 20mcg of T3 or on 25mcg - depending on what I've sourced.
says Dr. Lowe:
Endocrinologist Dr. Robert Volp made this clear to me. He wrote that a patient may be hypothyroid due to antithyroid antibodies for a few years before the TSH rises and thyroid hormone levels decline. Among people who consume enough iodine, the most common cause of hypothyroidism is autoimmune thyroiditis. Because the TSH and thyroid hormone levels may reveal the hypothyroidism only years after a person develops autoimmune thyroiditis, the proper protocol is clear to me: test thyroid peroxidase and thyroglobulin antibody levels before concerning oneself with the TSH and thyroid hormone levels. If the clinician is free to order these latter tests, thats fine, but the antithyroid antibodies, to me, are far more important.
However, as Dr. Bo Wikland has shown in Thyroid Science, many patients with hypothyroid symptoms caused by autoimmune thyroid disease do not have high antithyroid antibody levels. These patients may also have inrange TSH and thyroid hormone levels. Yet thyroid fine-needle aspiration shows that the patients thyroid glands are festering with inflamed and antithyroid antibodies. Laboratory tests, then, including antithyroid antibodies, are not particularly reliable.
Dr. Lowe still believes that clinicians or patients should order the tests, but if the tests are all in range, he feels a patient shouldn't accept that he or she is negative for hypothyroidism. If the patient has symptoms and signs characteristic of hypothyroidism, he feels that a trial of thyroid hormone therapy is proper. According to Dr. Lowe, many patients, after beginning thyroid hormone therapy, recover from their symptoms and have a higher level of well-being. They improve despite never having had any lab test results that were consistent with hypothyroidism. For many patients, that is enough for them; they are satisfied with their treatment results.
Hi shaws thanks for that. I'm a bit scared take whole dose of 40cg to 50mcg in one go. I took 20mcg first thing followed by a pulse of 125 BPM and anxiety. I feel so stuck and hopeless, T4 only leaves me zombie and T3 seems too intense to handle. I can feel myself falling into hypothyroidism on 40mcg T3 25 T4 and for the first time I just feel sad, stuck and out of options.
ps have I got it right that Dr Lowe took the whole dose in one go?
25mcg of T3 is approx equal to 100mcg of T4. I wonder if 40mcg T3 is a bit too much. I know we are all different but I'm fine on 20 or 25mcg of T3. You could trial a lower dose and keeping note of your symptoms slowly increase until you feel better or if you have palpitations, lower dose slightly.
Yes, Dr Lowe (scientist, doctor and expert on the use of T3) would never prescribe levothyroxine as he stated that doctors (USA) were paid to prescribe it when it was first introduced and that's how it became a No.1 prescription
wow, he had strong opinions. I spoke to my GP today who suggested to continue T3 only until a new NHS endo team picks me up. I'll see if that reduces the panicthst started when I added 25 mcg levo. When I hear some of the stories on this site I think I must have the most enlightened GP going.
First of all, Dr John Lowe was a doctor/scientist and 'yes' he took his dose once daily. He stated that it saturated all of the T3 receptor cells and they, in turn, sent out 'waves' throughout the day.
He would never prescribe levothyroxine and preferred NDTs (natural dessicated thyroid hormones) or T3 for patients who were 'resistant'.
where are you starting your dosing from? It’s ideal to introduce 1 x 5mcg dose of T3 and then add another 2 weeks later and so on… it sounds as if you may be going too fast?
Hello Hidden thank for the reply and hope you are well. I started T3 last June, first on 40mcg plus 25 levo then 50 mcg T3 only and then 60. I was getting too much tachycardia and breathlessness on 60 and something similar on 50 so I agreed with my private endo to try 40 T3 plus 25 levo again. He suggested 40mcg T3 would be the next option if I didn't get on with levo but says he thinks I'll I'be under medicated on 40 t3. Since making a change to 40 T3 and 25 levo I've had massive anxiety attacks. The private endo had moved to a great new job abroad so limited help available now. I'm waiting for an NHS endo. In the meantime my GP is supportive of me carrying on with T3 only at 40mcg but admits he's no expert. I think you might be right, I was desperate to get to an effective dose I probably escalated very fast. I could try a slow increase back to 50?
Hi Hashiboy… if I started on that dose I’d be on a psychiatric ward. I am utterly gobsmacked that you have been taking that much as an initial dose and no one has pointed this out! 😮 you’re a real warrior. I really recommend that you get off all that T3 pronto and reintroduce it at 5mcg doses, raising by 5mcg every week at the fastest 🙏🏻
hello Hidden i am bouncing off the walls. Talked to docs about reducing or a protocol to stop t3 for a while. The advice was drop down and maybe add in T4 and wait for an NHS endocrinologist. Yesterday I just wanted to stop T3 and go back to T4 and then have another go super slowly but I literally don’t know how to without screwing things up further and ending up badly hypo.
I absulutely agree with Relentlesssearch. Your starting dose was way too high and your body's response was accordingly hyper. You do need to go back to the basics and start low and slow. T3 acts quickly and is strong and the body needs to get used to it not to get overwhelmed as your example demonstrated.
A good guide for starting T3 is Paul Robinson's Thyroid Patient's Manual or Recovering with T3 which outline a safe protocol for introducing T3. And yes you will be hypo for a while but being hyper is no good either. T3 also requires all the groundwork to be in place (vitamins, minerals and most of all GOOD cortisol) to be effective so get learning about it and don't rely on endo advice about T3 because 99.9% of them have no idea what do with it or even how it really works.
Hi Hashiboy, tbh I think you probably are still pretty hypo with a strong sprinkling of transient hyper/overstimulated episodes from those mega starting doses. Something I’ve also had to do is make peace with this being a marathon, not a sprint. You’ll sometimes hear of people reporting immediate improvement, but on the whole we must accept our fate as the tortoises, and not the hares - slow and steady will win the race.
If I were in your position, this is what I would do. I’d keep my T4 dose as it is (you haven’t indicated that you feel intolerant to that as a stand alone?) I’d buy a thermometer (one with 2 significant figures) and a blood pressure monitor that includes heart rate.
Then, on waking I’d take my temperature, pulse and BP before taking 5mcg in the morning as well as the T4. I’d measure my temperature, pulse & BP an hour and 4 hours after that 5mcg dose. If the coast seems clear, I’d repeat this for 7 days. On the 8th day I’d add an additional 5mcg T3 taken at 12pm, checking vitals again as above. I’d continue this process until I reached t3 40mcg. Then I remain at that dose for 8 weeks before getting a blood test.
If you run into issues with raising your dose (anxiety, panic, palpitations, chest pain, sweating, nausea, dizziness etc.) this is either a sign you need to raise more slowly, or that you have a cortisol problem. But I think it’s worth you raising your dose first to see if you can get away without having to face the complication of adrenals yet.
Optimal nutrients are also important for the uptake & metabolism of T3, so I’d get my vit D, iron (4 point), b12 and folate checked as a minimum.
This is all just what I’d do and others may add something different or extra. I am not expert, but have experienced enough to know that you have started on too high of a dose. I hope you feel better soon! X
thank you so so much Hidden thats so kind to set out such a systematic approach. Going be travelling for the next week but I'll start as as I'm home. I was just call it quits and resign myself to a crap life on T4 only, you really have given such a boost and confidence try again. Just to my anxiety and dred on waking sky rocketed after adding T4 back in the mix and throughout my history of using T4 I've very bad reactions to dose changes. I forgot I should probably add no more that 12.5mcg at a time. Thanks
I also experienced dreadful anxiety when taking t3 and t4 together, but it has subsided a lot since addressing my adrenals and raising slowly. Raising slowly may be all you need to do. I’d try that first and if you still find you’re intolerant you can test your adrenals - I can help explain how to do that as I have just done it.
hi @rHidden would you be kind enough gh to share how Ido the adrenal stuff? I've reduced back to 40 spread across the day and will vbegib collecting data with small but had super anxiety, confusion, shakes and a pulse of 120 at 3 today a couple of after a 12.00 dose of 10mcg.
Hi Hashiboy, I'm not sure if my explanation was clear enough butI suggested you go back to FIVE (5) mcg of T3 PER DAY for one week before increasing that to include an additional 5mcg of T3 (making a total of 10) per day and etc. Splitting the 40mcg across the day is still just far too big of a starting dose. It may be worth re-reading my second reply to you if you are confused as I know it can be very confusing
Tried to drop to 40 in 5mcg Hidden and ended up with terrible hypo symptoms so back on the endos suggested 40 to 50. I know slow and low is the way to go but don't know how to get back down without crashing.
sorry to hear you are struggling so much! The whole process of finding the right dose/increases is so very stressful.
Have you ever checked your saliva cortisol levels? Having too low cortisol levels or iron can cause panic and anxiety symptoms when raising. You may have already checked this out but thought I would ask just in case ☺️
hi Beau55 hope you are doing good. I had a blood cortisol and 24 hour urine test years ago but all seemed fine. But AKatieD shared a really useful link to a site mentioning adrenal stuff so I might explore that. Had my iron last week and all good, I really appreciate you and everyone else for taking time to reply, it's very kind and the best supportive found.
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