I’m on 75 mcg Eltroxin and 12.5 mcg T3. I’m supplementing with B complex, B12 and vitamin D. I’m due to increase T3 again on Monday (two weeks after the last increase).
I had been feeling much better lately but the last couple of days I’ve been feeling utterly exhausted. What could the problem be? Is there anything I can do?
Thank you very much.
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I dropped it to 75 mcg. I thought I read that, but perhaps not. I didn’t realise my body would miss the T4. I though the T3 would replace it. Thank you very much.
T4 being an inactive hormone is supposed to convert to T3 which is the 'active' thyroid hormone and our brain and heart have the most T3 receptor cells and we also have cells throughout our body.
Don't worry as even few GPs know much about hypothyroidism and I have had personally found this to be true through a comment my GP made to me and I said 'I'm sorry doctor but that's untrue'.
That's why there's so many on this forum due to the failure of student doctors to be taught about one of the commonest autoimmune conditions which cause many hypo patients to remain unwell and symptomatic.
I’d really like to learn and I’m doing as much research as I can. My problem is I forget so much! It’s really awful that doctors have so little training about it. It’s something many people suffer from.
I think that sometimes we try too hard that we can become bemused.
My GP is near retirement age and he made a statement to me and I said 'I am sorry doctor' that's untrue. He couldn't respond to that as he hadn't a clue and that is due to their very poor training and even endocrinologists do not always get it right.
Before levothyroxine and blood tests were introduced, people who had hypothyroidism just died.
From 1892 onwards lives were saved through NDTs (natural dessicated thyroid hormones) This contained all of the hormones a healthy thyroid gland would have provided being made from animals' thyroid glands.
NDTs from 1892 up until the BTA removed them from the UK a couple of years ago.
No blood tests had been invented so it was all down to the doctors who were well-trained.
Why? who knows and the fact that these people who make decisions like that are supposed to know more than we, the patients, but we have had to read/learn and look after ourselves and when our symptoms are resolved it is a great feeling.
Levothyroxine (T4) is inactive and as to convert to Liothyronine (T3).
Liothyronine is active and is needed in our millions of T3 receptor cells and brain and heart have the most.
Also we have to have good B12, Vit D, iron, ferritin and folate at optimum levels.
I remember hearing about that in ToftTalks. It was so fascinating to hear how it all evolved. It’s pretty shocking that a huge proportion of people with a thyroid condition don’t feel well. It’s even more shocking that patients are being driven to the desperate measures of self medicating. I’d never have though that would be something I’d ever do. I felt I had no choice if I wanted to live a better life. I dislike keeping it from my GP. But I don’t want to take the risk of telling her. There is so much involved when you have a thyroid condition. It affects so many parts of your body. If only things could go back to they way they were and it was about how you feel, rather than a bunch of numbers.
So true in regards to doctors having limited training on thyroid disorders, BUT they can educate themselves to equip them to help their patients. They just don’t care. We’re now in a different era, so much info on the internet, so many many good articles. If their patients can make the effort to learn about this disease, so can they. SHAME ON THEM!!!
I can see what you’re saying. I think part of the reason they don’t is they are rather limited in what they can do. The guidelines are what they follow. But they’re really not helpful to patients in this instance.
We rely upon doctors to be qualified in the commonest of illnesses.
Problems with a dysfunctional thyroid gland isn't rare but few doctors have any knowledge about clinical symptoms. Neither was my doctor aware of 'numbers' as he phoned to tell me there was nothing wrong - he had no understanding what a TSH of 100 indicated. My response was that I cried.
That’s truly shocking and negligent. In no circumstances is a TSH of 100 ever okay. The doctor I saw when I was first diagnosed admitted he didn’t know enough about it and sent me to see Dr Toft. I’m now lucky that my GP will let me do what I need to. But she wouldn’t ever be able to prescribe T3 even if I said it’s what I need. But many endos wouldn’t either because of the guidelines.
Dr Toft's name often pop's up on the forum as he knew what he was talking about. I am not sure whether he's now retired. I also know he was the Queen's GP when he was in Scotland.
The reason I think it’s covid is because it’s different to what I have had before. It was far worse. It’s beginning to improve but still not back to ‘normal’.
Thank you! So I should stick to the 12.5 mcg T3 before adding any more. I thought it was supposed to be done on how I feel. I reduced the Eltroxin over two weeks or so. But perhaps it was too fast.
Thank you very much. I need to wait a week because I take B complex. But it would take time to come anyway. I’d like to see if the nurse at my GP would do it. I might even get it done on them because I reduced my T4. It’s whether I can get them to do the T3 too. I can ask. So I shouldn’t increase my T3 on Monday then? Thank you again.
You are already taking 75mcg of Eltroxin plus 12.5 of T3 and both combined is approx equal - in its effect - to more than 125mcg of T4. So be careful you don't 'overdose'.
i.e. 25mcg of T3 is equal to approx 100mcg of T4.plus 75mcg of Eltroxin.
I think going by how we feel is so important. Once I feel good, I’ll have my blood checked out. I’ll have to have the vits done privately. I don’t think the doctor will do them again so soon.
Should I reduce my T4 to 50 mcg before adding in more T3?
I think, and am not medically qualified, that we should concentrate on how 'we feel'. If you feel o.k. with no symptoms remain on that dose.
Ensure your B12, Vit D, iron, ferritin and folate are optimum.
I always take one daily dose as recommended by Dr John Lowe who was an expert in the use of T3 and he himself took it too. Unfortunately he died due to an accident. I shall give you one of his links. He was humane and resigned his Licence so that he could help patients without being restrained.
The aim is a TSH of 1 or lower, and Free T4 and Free T3 to be towards the upper part of the ranges.
I have read some of Dr Lowe’s writing. He made so much sense. What a loss to the endocrine world. I also take my dose at one time. Apart from anything else, that seems easier. My TSH has always been suppressed and was at my last test on Feb 1st. My T4 was out of range and my T3 was 29% through the range.
Thank you for replying. I appreciate everyone’s help.
My T4 was out of range (too high) when it was tested on 1st Feb and T3 was 29% through the range. My TSH is always suppressed. And has been since I was diagnosed in 2004. Should I test now, even though I don’t feel good and have been on the dose for two weeks. Monday was the day I was going to increase my T3 by 6.25 mcg.
So I shouldn’t go down to 50 mcg (from 75 mcg)?
I don’t feel good but I don’t know what to do about it!
Thank you so much for the information. I find it all very interesting. It’s incredible how the body works, or it doesn’t in many cases because of thyroid disease. I do wish I was a bit more knowledgeable about all this so that when I don’t feel good, I know what to do.
I’m self medicating with T3 because I couldn’t carry on feeling so terrible. Plus an endo may not prescribe it. The doctor doesn’t know about it. My one is pretty good at me saying what I need and her helping to make it happen. She’s a great GP. She figures I know more about it than she does. Although I really don’t know much - hence not knowing what to fo.
I just wanted to add that at times I've had to reduce or stop my levothyroxine too quickly because of serious issues with supply or because of a sensitivity. Not recommended! I have found it takes a couple of months without the normal dose to really show up properly as full-on exhaustion. Initially I'd feel great but then the hypo symptoms would increase. I note that you shouldn't suddenly stop or massively reduce levothyroxine. This was self-torture that was unavoidable in my case. It sounds like you accidentally did something similar. Hope this helps in some way
I started taking T3 but I have done it low and slow. I know it’s the only way. I should have perhaps taken more time to lower my dose of T4 but it wasn’t immediate. It was over about two weeks. But I should have done it more slowly. Thank you for sharing your experience. Whatever I do going forward, I’ll do it slowly. And one thing at a time.
Thank you very much for the link. I’ll read the articles. I’m glad your GP leaves you to it. I’m guessing you told her you take T3 and that you source it yourself? I’m in two minds whether to tell mine. I would like to, but I don’t want to be de registered!
I had never even thought of that scenario! Or even if you have to go into hospital for an operation - what then!? Perhaps I will see if I can find an endo without would prescribe T3. It really isn't easy. And we don't have money to waste on an appointment with someone who is only interested in following the numbers and the guidelines. It is such a hard one - and as you say, it is madness! It really is.
Hey I changed to Eltroxin as the meds I was on contained gluten. Since changing to Eltroxin I’m struggling to get up in the mornings and falling asleep early evening My doctor has increased my dose as he says different brands absorb different. I still don’t think this brand is working for me
Wow! That doesn’t sound good at all. I hadn’t thought it could be that. I have been on Eltroxin for many years. It’s the one I have always had, except when we lived in France. I don’t think changing brand would work very easily. I’ll look into it though. Thank you for your reply.
You don't need to change T4 brands. You need to increase your T3 by 1/4 tablet tomorrow as planned. You are taking very little.
I too have reduced my T4 a bit too quickly I think, starting in early November. I am shattered after the last reduction. But I'm on 50mcg T3 a day and think I'm going to have to try more shortly. We can't be afraid. You will know if it's too much. Keep a track of your temp through the day. If it goes over 37c your T3 is likely too much for you. If you get very loose bowels that can also indicate it. Plus you won't feel good. So give that extra dose a try with confidence.
Thank you for your lovely reply. I will take the T3 tomorrow and I stuck with 75 mcg Eltroxin so we will see what happens. What are the signs that I am taking too much T3? And what should my temp be? It would be good to keep track of it, plus my heart rate. But what should that be? I am not on much T3! Do you self medicate or is it through an endo?
It is terrible that we (I) am afraid of taking too much and also self medicating. We should not be put in that position.
I'm self medicating but I have a private endo who keeps his eye on things (however I am now way past him on knowledge of what might be going on) and I get my T3 private prescriptions from him.
I use this forum, the thyroidpatientscanada blog and Paul Robinson's books to help me.
Your temp should be somewhere between 36.7 and 37c. It will be lower in the morning when you wake, so test it then before you take your meds and then test again 2 and 4 and 6 hours after your T3 dose to see what effect it has. You don't want to go over 37c really. Do that over a weekend and keep a diary. Include your dose, your timing of the dose and your signs. HR is a good one to track too. I live with permanent atrial fibrillation so my HR is bonkers but yours should be more even and therefore easier to spot it it rises and stays higher for a week or two.
Classic over medicated signs are a slight tremor of the hands and feeling agitated. Feeling too hot. Too much energy. But we don't all have those. Some of us just feel like we feel if we are on not enough. This is why we need to make a change and observe for a while. If you make a change and you think your HR has gone up or you feel agitated etc, don't reverse immediately. Give things time to settle. A week or two. Then if you still feel wrong you can look to reverse.
That is interesting you are self medicating, even with an endo. Do you mind me asking how much you have to pay for your prescriptions? I don't really understand why you can't get them on the NHS the way you would with T4. Thank you for the advice re the temp. I will make a chart and record these next weekend. My hands constantly have a tremor anyway because of my asthma medication.
I will track my heart rate too. And I usually have a temp around 36.3 or 36.4. Perhaps it will have gone up with taking T3. Cold is something I really suffer from. I am always wearing a gilet and a scarf at home.
It is a good idea to give it a week or two to see if things settle down. I will do that.
What blog do you use?
I wish Paul Robinson's books were on Kindle. I always read at night with the light off! And unfortunately that is the only way I can do it. Maybe soon they will come to the Kindle.
I will keep reading all I can and hope I can learn as much as some others on here. At the moment though, I have too little time. If my daughter ever gets sorted, I will have so much more free time that I can use to do research.
Feeling colder than others around you is a classic hypothyroid symptom. And your temp is too low, that's another symptom.
Paul's books won't come out on Kindle I suspect. They are text books anyway and are not the sort of thing to read in bed. You need to study them. So it needs a pen and paper and sticky notes and concentration.
My endo is a private endo. NHS endo was clueless and about 28 years old. No experience of what I was going through and not interested either. A private endo can't prescribe medications through the NHS. The NHS is very reluctant to prescribe T3 anyway, especially in big enough doses. If I ever get myself sorted and well I will campaign to have my T3 from the NHS but there's no point at this time. I use my private prescription to buy T3 from a UK pharmacy. It's not too bad.
The cold is really horrible! My temp this afternoon was 36.2. I’ll do as you suggest - the only thing is that I take my thyroid meds at 4am. I could take my temp on waking and then 2, 4 and 6 hours after that.
NHS endos aren’t usually very good. They are so constrained by the guidelines, they really can’t do anything. It’s awful. They are numbers led and it doesn’t seem to matter about the patient at all.
Thank you very much for the blog. I will have a look at it.
HiAs you take your thyroid meds at 4am, I would suggest you try to get a temperature before you take it just the once and write it down. You can retest it weeks later if you want. It might be helpful to know what it is, but not essential to do that early one every day.
You are taking a small dose of T3 and possibly wasting it by being asleep. You might want to consider taking your Levo at that time so it's well away from food, but you don't need to be so concerned about T3 and food so you could take your first T3 when you get up, while you are washing and dressing etc and then you could consider splitting the dose and trying to take the second dose around 5-6 hours after the first. Test temp just before and 1.5 hrs after each dose of T3. If your temp rises at the 1.5hr point and has dropped again by the second dose then you could try bringing your second dose an hour earlier, let it settle and then see what's happening. If you get suddenly tired before the second dose every day then that's another signal that you need to bring your dose forward by an hour and see if it helps. But if your temp never gets over 36.8 then you need to consider a dose increase. As I think I'm starting to realise, timing is as important as dose level but both are important to tweak. If our temp goes over 37c, you need to reduce your dose or spread your timing out further.
I'm only just starting to realise timing is more important than I thought and I've been messing about at this for a long time.
Just to add - I’m taking 100mcg x 5 and 75mcg x 2 of T4 and 12.5mcg T3 (split as 5, 2.5 and 5 throughout the day with one of the 5mcg between 2-4am when I wake). My endo made me lower to 75mcg T4 every day when I added a little extra T3 and I hit a fatigue wall. So I cried, stamped my feet (only lightly as had no energy) and put it back up. Am now feeling much better.
When I was first on T3, I only took 10mcg and my T4 was lowered by 25mcg per day. I was ok on this for 3 years (although always felt I needed 12.5mcg as 15mcg gave me a fuzzy head). Then I started feeling under medicated again and added 25mcg T4 on some days and this helped a lot.
So you definitely need to experiment with your doses till you get it right for you. And maybe 100 each day will be too much, so you might need to try 100mcg T4 3 days plus 75mcg 4 days……….obviously plus whatever T3 suits you.
Hope that wasn’t too confusing - what is clear in my head is clear as mud in others ☺️🧁
Thank you very much. That is so helpful. This is such a great community and has helped me more than I could say. It does make sense. I will try adding the extra T3. My plan was to get up to 25 mcg and see how I feel. If I start to feel even worse, I will re test.
I am taking my T3 and T4 together at about 4 am when I wake in the night. I feel this gives it the best chance not to be interfered with anything. I used to take my T4 at night (10 pm) but after thought and advice from here, I changed it.
I will experiment with different times once I am further down the line with things.
It might not be how much you are taking, but when you are taking it.
When I first started combination therapy I did so on NDT, which was a huge success with vast improvements over T4 mono therapy. Since succeeding to get a T3 prescription on the NHS I have been on T4/T3 combination therapy and failing to do any where near as well as I did on NDT in spite of trying every possible permutation of dose.
On combination therapy and mono therapy I get two particularly worrying adverse symptoms: an elevated heart rate at rest (90-100bpm) and a crippling crash in energy levels between 2pm and 8pm. I get the crash on NDT but it is not as severe. I have gone back to NDT on several occasions just to get through school holidays, when I have 6 children to deal with and an immense amount of travel.
More T3 and less T4 does help a lot. It fixes the heart rate, but not the afternoon crash. However such knowledge is moot, as my NHS Endo won't support the dose combination that works for me (100mcg T4 + 15mcg T3). He will only support 10mcg T3, which means taking 125mcg T4 to get adequate TSH suppression... and that level of T4 causes the heart palpitations.
That was until I read the above article a few weeks ago and started taking all of the T3 (10mcg/day) and most of the T4 in the evening. The T3 is optimally split between 6-7pm and 11-12pm to try to ramp up serum levels gradually, though I frequently forget the earlier dose and just do the lot at 11-12pm.
The change has been dramatic. Since taking it all in the pm those symptoms have subsided. Sleep incidentally is amazing. My heart rate is not perfect, I still think I need more T3 and less T4, but it's gone from "I don't think I'm going to make my 50th birthday" to "This is tolerable".
I suspect that transformation is down to cortisol: Since about 6 months after my thyroidectomy, which was exactly 2 years ago, my cortisol has been very poor and has stayed that way during repeated testing in spite of being on combination therapy/NDT for the best part of a year. I anticipate that by matching the natural circadian rhythm for T3 I might have stumbled on the way to restore my cortisol cycle. I'll know when I retest in the coming months.
Note though that for the fist five days on the evening dose I felt quite flat during the whole day, but that has since picked up.
Thank you very much for the article, and your reply. It will help, I am sure. What you say really goes to show that it is also about when you take it. I will definitely try to figure out what works best for me. My issue is taking the medication when it won't be interfered with by food, or anything else that might make it work less well.
I have also been having a crash in the afternoon. The morning is usually okay, but come 3 pm I am done for the day. It is awful. I am not old at 50 but feel much older than my years.
I only have two children, but one has autism and can be a lot of work. And I have a lot of work to do on her behalf in relation to the LA. It is very hard work and almost a full time job. I take it in my stride and do try not to get stressed by it. Luckily I know what I am doing with it all and that really helps.
Once I have increased the next dose, and perhaps got up to 25 mcg assuming I feel okay, I will retest and if I don't feel okay, I will juggle things around - slowly!
And I will read all the articles that people have posted here. The more I can learn, the better. I have two goals in life right now - get my thyroid sorted and get my daughter's provision sorted and provided by the LA!
Shaws has some good advice. Finding a source of NDT is your best bet. Most of us- whether in the UK or the US, find ourselves remaining ill without self-medicating. Bovine NDT is a weaker version of dessicated thyroid hormone, but that is not necessarily a bad thing. Starting out on a low dose and increasing slowly until you find when you feel well is the advice of many who have found their way.One other thing as you go. Switch from iodized salt to kosher salt or sea salt (kosher is better in my experience), and try an iodine reducing diet for 30 days. (No dairy, no egg yolks, nothing from the sea, etc.). You may well find that your own thyroid functions better with less iodine. We must have iodine, so don’t hear “remove iodine! Reduce for 30 days in an experiment. It worked so well for me, I’m still doing it 18 months later.
But if you’re taking thyroid hormone replacement of any kind, you’ll be taking in iodine compounds anyway, so I’m not sure how reducing other sources of iodine would help?
It’s possible the improvements you’ve seen are due to intolerance to dairy products and/eggs rather than a reduction in the consumption of dairy. Lots of people are unknowingly intolerant to dairy.
The amount of “iodine compound” that I take is like 5 mg of bovine NDT every 10 days or so. It is so light and weak as to not be even considered. But again, it is to be emphasized that yes, we must have iodine - and for me it a reduction in iodine that has worked and not the elimination of iodine. I’m surprised to hear that iodized salt is not used in the UK. It’s extremely hard to avoid it here in the US (Resturants, processed food, etc)
I am Very confident that reducing iodine IS what made the difference after 30 years of trying everything under the sun including acupuncture, proteolytic enzymes, etc. And I have the healing thyroid gland to prove it. Reducing dairy (totally eliminated for 30 days) egg yolks (not egg whites) anything red (wine, beans, etc.) - a 30 day experiment, and I knew.
After 30 years I know what being overdosed on T3 / T4 feels like (I’ve survived more thyroid storms than any one wants to contemplate). And I know what being underdosed feels like. Now, I know what feeling well and almost totally free of medication feels like.
What I don’t quite understand is why folks have such a hard time accepting / believing that iodine toxicity just might be one of the causes of Hashimotos / hypothyroidism! Why is it continually dismissed out of hand? It’s not like anyone here or anywhere for that matter, has the cure / are the experts for hypothyroidism, right? There is research that bears out the iodine overload connection.
dtate2016, 'There is research that bears out the iodine overload connection.'
It would be very interesting to see this research. If you could post links to relevant papers etc., that would help those who 'continually dismissed out of hand' to get an understanding of what you're talking about.
As has already been said, we don't use iodised salt here in the UK. It may be an ingredient in some ready meals, but anyone who uses salt on their food and in their home cooking would have to make an extra special effort to purchase iodised salt.
I think it would be very wise for anyone thinking about trying out your iodine reduction dietary suggestion, to first get their iodine level tested.
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