Following 3 years, spent hoping that my GP could help me manage my autoimmune thyroid symptoms, I have finally taken the plunge and obtained 100 x 25 mcg of Tiromel (T3) whilst on holiday in Turkey. They packet was available over the counter for the equivalent of just £2.57
My thyroxine dose was increased early this year from 125mcg - 150mcg, I have dropped my dose back down to 125mcg and have started taking 25mcg of T3 with my Thyroxine, first thing in the morning, at least 1hr before food and drink etc.
I'm not feeling any adverse effects of note, after just over 2 weeks on this combination. I do feel less exhausted/tired, digestive issues appear to getting better and I'm beginning to feel as if a range of symptoms are improving slightly/slowly.
I would appreciate feedback from anybody with experience of self medicating in this way, that can help highlight any pros and cons, that I should be aware of.
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hypo27
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hypo27 It's normal to start adding T3 low and slow, either 1/4 or 1/2 tablet to start, wait a couple of weeks before increasing by another 1/4 and building up slowly. You are lucky you haven't had any adverse reaction by starting straight away with 25mcg. You have reduced your levo by 25mcg and added the equivalent of 75-100mcg - T3 is three to four times as potent as T4.
What you need to do is get FT4 and FT3 tested at the same time (Blue Horizon have a range of fingerprick tests which include FT3. The aim is to keep FT3 within range, wherever you feel best but not over range.
When taking T3 in any form it will have the effect of lowering or suppressing TSH and usually lowers T4.
It is becoming apparent, that I have indeed messed up the process of adding T3 and I might well be over range.
I would like to attempt some form of damage limitation. What are the over medicating symptoms that i should look out for? How should I go about correcting what I have done?
I'm concerned that taking blood tests whilst I am chopping and changing doses, will not serve me well either. Would it not be better for me to adjust my T4 down some more and at least try and stabilise a dose for say at least 1 week, before taking blood tests?
When I was on combined dose, or any thyroid hormones I I too took my dose once daily.
You are doing the right thing and take your pulse/temp frequently until you get to an optimum dose (i.e. you feel well with no symptoms). If either go too high drop back to the previous dose. I'd be apt to increase by 1/4 every two weeks until all symptoms are relieved and remain on that dose. If symptom(s) return get a new blood test which includes FT3 but I'll also give you a link which may be helpful.
Tiromel is manufactured by Abdi Ibrahim in Turkey, whilst it is not licensed in the UK, it is a bonafide T3 medication, that hasn't gone through the protocols required to obtain a UK licence. That is probably one of the reasons why it is so much cheaper to purchase, than other brands currently available in Europe and the UK.
I have friends in Turkey, that can send more supplies out, should it prove to be something that works for me.
Any idea what your results were like before you changed over? Objectively you have not reduced your levo sufficiently to compensate for 25mcg t3 (the rule of thumb is to reduce levo by 50mcg for every 10 t3 you add, and usually people start by adding 10 t3) but I guess if your t3 was on the ground this wouldn't necessarily be a bad thing.
I'd be inclined to say you might miss your ideal dose of t3 by starting so high. And I'd add that my pulse and temp didn't change much when my t3 was over range, so for whatever reason it is possible to go over the top without knowing.
Having said that, the whole thing is a bit of a crap shoot and at this stage you've been on it long enough to suffer any adverse effects by now. I hope you continue to see improvements and feel better!
My main concern has been 1058U/ml antibodies and elevated cholesterol that I have been unable to bring down, with diet and exercise. TSH was 7.4 in Feb.
Metabolism has definitely improved with some modest weight loss. You mention temperature, I have felt a little warm at times, but had thought nothing of it. Joint pain in the mornings seems to be improved.
From what I have been reading, I think I may well have started on too high a dose, albeit that I am not feeling too bad.
What are the side effects I should be experiencing, If I have overdone things?
How do I bring things back down, without causing too much havoc on my system?
I have dropped another 25mcg of Thyroxine this am for starters, meaning that I am now taking 100mcg Thyroxine and 25mcg T3
Elevated cholesterol used to be one of the ways doctors determined a person had hypothyroidism! That, combined with high blood pressure was a sure sign that something was amiss with the thyroid -- especially if the increases seemed to come on rather suddenly. Therefore, it is unlikely you will change your cholesterol by diet. Getting control of your hypothyroidism will most certainly take care of your elevated cholesterol.
Heart palpitations are the main symptom of too much T3. I don't mean slight palpitations, which can also be a symptom of being hypo; but major palps. Profuse sweating when not exerting oneself is also a sign of too much T3. Hyper-defecation sometimes precedes any of those other symptoms. With any hint of any of these hyper symptoms, merely lower your T3 dose back to where you had no symptoms of being hyper. Just make changes slowly.
From what you convey here, my experience is that if you don't have any hyper symptoms, then carry on as you're doing. If and when you feel the need for more, add more T3 slowly; adjust your T4 lower to compensate. Small additions are wise as if you go slightly too high then it's easy to rectify, and without much discomfort.
T3 is perfect for those who may have some vitamin deficiencies or low stomach acid and thus don't fully absorb vitamins from food or supplements. Absorption issues are very common and unknowing doctors keep raising a person's dose beyond reasonable limits. If a person has to take high doses of thyroid hormones, usually there is an absorption or vitamin issue...or both. There are a number of factors that can keep us from making the most of thyroid hormones.
Also, without the right vitamins in our bodies, we cannot convert T4 into T3. T3 is the active thyroid hormone that fuels the metabolism. We cannot live without it.
For some, like me, since I could not convert T4 into T3 it was being stored in my body without being used at all. As I took more Thyroxine it was becoming toxic. I got very ill. Not one doctor ever mentioned conversion issues, even when my TSH was rising. When it went over 4, my doctor said it was just fine. He's an idiot. I am not. I felt the worst ever in my life. Horrible. Brain fog and body aches and pains from the depths of darkness. I was not me. I knew something was very wrong; beyond the fact that the doctor didn't know optimal TSH (in the U.S.) was to be around ONE or lower. I even showed him the "new" scale that had been changed in 2003 by the American Association of Endocrinologists. {Mind you, this all occurred in 2016.} He said he never heard that and accused me of berating him. Hmm... if the shoe fits, right?
Blood tests are often inaccurate when it comes to telling doctors how we feel. We can all the T4 in our bodies but if it's not converting into T3 or the T3 is not getting into our cells, then that's just as bad as getting no thyroid hormone at all. Just because we ingest it doesn't mean we are getting it into where it needs to be in our bodies. Blood tests show what is in our bloodstream. That doesn't help us much if we have a conversion issue.
Keep researching all you can and asking questions. Love seeing people take their health in their own hands, as the vast majority of doctors do not have the time or expertise to give you the optimal treatment you so desperately need.
Our bodies need thyroid hormone. That need changes from time to time. With good notes of how you feel, what you're eating, vitamin supplements taken, exercise routine, etc., we can hone in on what we need under extenuating circumstances (i.e., I need more T3 than usual when preparing to engage in 2+ hours of tennis). The better our notes, the better we can adjust our thyroid hormones for our best quality of life.
I was at rock bottom before taking it upon myself to discover exactly what my needs are. Doctors had no clue. I have one patient, they have a plethora of them. I have the motivation to make myself the best I can be... doctors are not motivated to spend much time with patients who need more of their attention. They get paid the same whether a patient is easy or complicated. We may not appreciate that...but it sure makes sense.
Kudos to all who have decided to get the knowledge and understand the needs of their body. Thank you to everyone here who is so helpful--and thanks also to those who enter here and share their story and present their questions. Together, we can make changes. If not on a grand scale, we most certainly can change ourselves and help others in the process.
Apologies for such a lengthy reply. I am passionate about getting the word out that no matter your situation, we can learn to control and conquer hypothyroidism. There are ways to get what we need in order to not only get better, but to become the very best we can be! Hypothyroidism does not define me. However, having it has given me much passion to do all I can to help others find their way to great health.
Thank you CSmith Ladd, no apologies needed for the length of your reply, I found what you had to share very useful.
I have never had high blood pressure, if anything it's always been on the low side.
Palpitations have not been an issue since starting T3, however I have noticed an increase in body temperature although no profuse sweating.
The one side effect that you have mentioned, that I'm possibly experiencing, is a mild form of Hyper-defecation. I had put a more frequent movement, down to my metabolism having started to regulate itself more effectively, as I have suffered with constipation for years. I have welcomed this change, it feels normal to be having daily movements again (2-3). I have now noticed a slight headache in the mornings, but nothing too bothersome.
I practise yoga 3 times a week, my diet is good, I try and eat as much raw foods as I can and I am currently trying to exclude gluten with is challenging. Dairy, red meat and alcohol, rarely feature in my diet. I am supplementing Ferritin and Vit D as I have repeatedly tested very low on both these vitamins. I've introduced a B12 spray into my treatment and Selenium, as both these vitamins have been suggested as worth supplementing too. I include other supplements into my diet, including Inulin, chia seeds and cold pressed linseed with my gluten free porridge in the morning and have that with coconut milk!
Fruit and veg feature well in my diet, and I moderate the cruciferous vegetables, my vices are dark chocolate and coffee, but in moderation. I have recently started to included a quality probiotic into the equation following reading up on the importance of maintaining a healthy gut, so it is frustrating, when doing all this, to continue to feel unwell.
I think I have developed Carpal Tunnel on one side, my GP has referred me to an RA clinic as she wants it ruled out. I am sure it isn't RA; I'm having increasing difficulty using my right hand and there is associated pain in my wrist and arm. My overall bodily aches, pains and stiffness do appear to have lessened since taking T3. My GP has put me on antidepressants to alleviate pain and stiffness in the past and I just do not want to go down that route anymore.
I believe that my symptoms are akin to fibromyalgia, but my GP will not diagnose this, till everything else is ruled out.
It often feels that I am falling apart and being kept "within range" on T4 alone is just not working for me. I am fearful of developing other auto immune diseases, if my symptoms are not managed correctly. Succumbing to self medication has been the last resort for me, I long to feel well again, the range of symptoms I experience can be so debilitating.
Today I have started splitting my T3 dose, to see how that feels over the next few days. 1/2 a tab when I wake with my T4 and I will take the other 1/2 at 12.30pm
Thank goodness for this forum, it helps to make me realise that I am not imagining illness, that my symptoms are real and that I am not on my own with this!
It could be that your body is cleaning itself. Some who begin on hormone therapies and introduce vitamins find they experience the same thing. With hyper-defecation it becomes apparent because the turn-around time from stomach to toilet shortens considerably. It becomes: You eat...you go!
When taking T3, low BP is common. T3 will lower your blood pressure so that has to be watched. Many take their pulse a few times a day to see where they are. I find that lots of Himalayan Salt is wonderful. I put in my coffee, my water, everything. I have yet to push it to too much. I really don't think I could. You should try it, bet it will help with your low BP.
I've had a problem with low BP for over twenty-five years but never knew what it was. Mine is caused by low blood sugar. Had to watch my carb content and its ratio to protein to fat. I wasn't eating enough carbs; and when I was... it wasn't offset by enough protein and good fats! Had to find that out also on my own.
I truly believe with all my heart that fibromyalgia is a subset of hypothyroidism. I was diagnosed with fibromyalgia nearly thirty years ago.
Whatever is discovered in the future about fibro; controlling hypothyroidism, for me, also controls all my fibromyalgia symptoms. In fact, the fibro symptoms are the last ones to be put under control and serve as notice that I'm taking the proper amount of medication for my thyroid hormones.
In my opinion, you don't need anyone to diagnose fibromyalgia for you. Regarding many maladies, conventional medicine has replaced good nutrition and proper lifestyle habits to a fault. Read up on fibromyalgia and its relationship to hypothyroidism. It is a common companion to hypothyroidism. Knowledge is power.
Carpal tunnel is a common ailment with hypothyroidism. I've had the surgery on both hands, sixteen years ago. Too, I had a spontaneous collapse of the ulnar nerves in both arms. They were flattened like two garden hoses sitting beneath a Mac truck. At the time, I had no idea that those things were associated with hypothyroidism. But at the time, I didn't know I was hypothyroid.
In hindsight, I wouldn't have any of the surgeries, but instead would have gone down the path of changing my diet and nutritional supplements. I didn't know my stomach could not produce enough acid to provide my body with the nourishing vitamins in my diet. A total mess, for sure.
The more I learn, the more I see that we can control this more than we can imagine. It takes time and great motivation to figure out all the changes needed to get our body back in harmony with itself and our lifestyle. It can be done!
We are often frustrated into thinking that the many things that are going wrong are a number of different things! But, in my experience, I am connecting all the dots. From gallbladder removal to a hysterectomy... I now know the culprit causing all of my problems was my undiagnosed hypothyroidism.
It went on for decades. All the signs were there, but I was ignorant as to the malady. Being sick as a preemie, I thought everything was due to that and my congenital spinal problems. I was used to pain. Lots of pain. So I learned to ignore it all and continue on my way, happy and full of life despite my ever growing health issues.
I no longer have a thyroid, so I certainly can't turn back the hands of time...but others can. Take the time to learn everything you can about your body and your thyroid. My severe hypothyroidism went into Grave's Disease. I became hyperthyroid. Of course, at that point, no one thought about me ever being hypothyroid.
I found that doctors, even endocrinologists are mostly brainwashed about what is the proper treatment. They prefer the "easier" cases. The ones that are able to take a certain pill at a certain time and do perfectly fine day in and day out. Well, I certainly wish we all were that way! They know nothing of conversion problems and they are scare of dealing with T3. They don't want the responsibility of teaching a patient how to use it (IF they even know how to use it themselves). The only doctors I've found who truly understand are those who are either hypothyroid themselves or have a spouse who is.
Sometimes it is a curse to type fast. I get carried away. If nothing else, I hope this all lets you truly know how much I care about each and every person on this planet who is not being treated appropriately to get their thyroid hormone problems under control. It's not a quick fix for many of us. We have to tweak it depending on our particular situation in life. As we improve our vitamin deficiencies, we tweak it as we get better. Thus, it is imperative that we learn just how to do that.
T3 seems like a miracle when taken by those of us who cannot convert T4 into T3. Prior to knowing that, I was loaded with Reverse T3 due to an overabundance of T4 that had remained in my body unconverted. Since I couldn't convert it, it stockpiled and became toxic to me as I continued to take it! I had no idea. But in researching things and ordering my own tests, I found out exactly what I needed to know.
Until we find exactly the cause of why we cannot convert thyroid hormones as usual, T3 allows us to get thyroid hormone in our bodies and into our cells. But we have to take the right vitamins to get that to happen. Vitamins optimize our bodies and allow us to be receptive to thyroid hormone. For many, they can finally make the most of the thyroid hormone their bodies produce!
Well, my dear, I've done it again. Over the top with passion. But I'm here to help all I can. Hopefully, something here is helpful to you.
I'm very happy to be a part of this forum and thank each and every one who is here. Together, we can do this! As I continue to learn, I am very, very grateful for others who also have not given up and who are deciding to find out what is right for them.
I self-medicate with NDT, & added Uni-Pharma T3 earlier this year, partially out of curiosity & partly cost. I found 1 grain of NDT seemed stronger than 25mcg of T3, which should have been a slightly higher dose. I've never taken T4, so can't comment on the difference.
I leave at least two hours before eating, so perhaps a longer gap might reduce the need to take a higher dose.
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