This is a fixed post where I comment on things I read or observe. Where I share some thoughts and maybe recommend some things I like.
Getting and giving advice in Facebook groups
8th of January 2020
Being a member of thyroid Fb groups can be a great help. One can learn a great deal, as well as ask for and give advice on one’s health and well being. One can get help, but one can also be misled. There is a lot of bad advice out there. Many don’t feel they have to know a lot on thyroid issues to advice others. So always keep that in mind. But it’s not always easy to give advice either. As people often don’t understand what info to provide in order to get good advice.
I think that when asking in a thyroid group, almost regardless of what one asks about, it is good to provide info on one’s thyroid status. So often things tie into that. The better your info, the better the answers will be.
These are the things I find very important:
Lab results, as recent as possible
When in the day test is taken
Whether or not you take thyroid meds. If you do, what meds and how much.
Now people have a chance of assessing your situation. Why is time of day important? It’s because TSH falls over the day, it’s much lower in the afternoon than in the morning before 9 AM. So if you test at 3 PM it might look like your TSH is ok, whereas it in fact was too high earlier. It’s the morning TSH that is the standard.
Whether or not you take thyroid meds is of great importance. And also what kind of meds you take. As optimal thyroid levels will vary depending on what meds you are taking. You can read my take on that here
When people giving advice don’t have this info, there will be a lot of confusion and back and forth. I just read yesterday, in a group. Someone asking advice for being cold. No additional info given. After being asked for labs, one year old labs were posted. But no info on medicine or doses. She got the advice, she needed T3. But how could the advicer know this? Ft4 was very low. Ft3 was also low. TSH was around 1. First of all, if test was taken in the afternoon, that could explain the TSH. But if taken in the morning, there would probably be some pituitary issues, as Ft4 and FT3 were low. Secondly, when one doesn’t know anything about meds, one cannot say anything about meds. The person might need to start taking T4 meds, she might need to increase T4 dose if on T4 already. Only if already on T4 meds and on a sufficient dose, and FT3 was still too low, would the advice on taking T3 be correct.
So you see, knowing these things is all important. Some accuse me of being dogmatic when it comes to thyroid levels. Yes, I am dogmatic in the sense that I believe no one can have a FT3 level under what a thyroid healthy person has, that is 4,7. Men need a little higher and so do young people. Many women also need a higher FT3 than this, this is only meant as the lower limit. I don’t think anyone can do well and be free of symptoms under this level. But over that level, there will be a lot of individual variation. Where each and every one must find what level they feel optimal on.
As I said, Facebook can be a great help. But there are also many negative aspects to Facebook. I won’t go into all the stuff about being used by Fb in order for FB to make money and power. But more all the unpleasantness on FB. There are a lot of admins and moderators on power trips. And Fb in itself appeal to the ego in us, draws out our worst sides often. It steals our time and energy, and we can often feel bad after a session on FB. At least, that is my experience. So I think it is important to keep it in moderation, and if you can, keep a distance. Friends on FB are not real friends, they won’t be there for you. It is a superficial world. If you are a sensitive soul, like me, it’s not the best place to be. I try to limit my stay as much as I can. And when I do get sucked in, I often feel drained by it. So be aware of what it does to you.
Be well, Liv
Thyroid antibodies are made in the thyroid
It’s important to know, that thyroid antibodies are produced by B lymphocytes inside the thyroid, Thyroid Autoimmunity: Role of Anti-thyroid Antibodies in Thyroid and Extra-Thyroidal Diseases
That means, that if you have little or no thyroid left, you cannot have an antibody flare. If you have a little remnant, like me, I have 10% left, you might produce a little antibodies. But not in any great amounts. After thyroidectomy, antibodies will come down within months. So i.e if supplementing with Iodine, you don’t need to worry about antibodies if you don’t have a thyroid.
I have been told in a pretty iodine phobic thyroid group, that even though I have such a little thyroid, I could have a TRAb flare that could impact my eyes and skin, TED and Graves dermopathy. When taking Iodine. NO, I CAN’T.
Be well, Liv
About giving specific ranges as optimal for thyroid health
13th of October 2020
I just read in a thyroidgroup, admin dissing people like me who give ranges for optimal thyroid levles on the various meds. She said, we are too individual for that and that we just blamed other issues, like low ferritin, iodine deficiency, sex hormones, low cortisol if people could not tolerate these levels. I don’t know that I list iodine deficiency as a contributor to not being able to tolerate a high enough FT3. I list it as a reason why people don’t feel good despite optimal thyroid levels.
Anyway, I don’t agree. I believe the big problem for many hypothyroid today is under dose. Many don’t realize it themselves, they just know they feel bad. I believe seeing numbers and where in range can be very helpful for these people. They can compare with their own numbers.
This admins says, we must respect each person’s unique biochemistry. I find that a little strange, as this same person refers to the fact that healthy people have remarkably similar thyroid levels, you can read more about normal levels here Optimal thyroid levels. Why should we thyroid sick be so much more individual?
Regarding blaming other issues when people cannot tolerate the FT3 levels we advice, these other issues do matter. Issues like low ferritin, low cortisol and imbalance in sex hormones. I don’t know how many times I have read people, esc. women, complain of heart palpitations when FT3 reach a certain level. All the while being very hypothyroid, and FEELING hypo. In this group there is very little focus on all the other health parameters that need to be in place to feel good. There is mostly talk of thyroid levels and various thyroid conditions. But vitamins and minerals and sex hormones are of great importance for us hypothyroid. So ignoring these will lead to poorer quality of life, and lower ability to tolerate a FT3 level that will make one euthyroid.
If you suffer from heart palpitations one reason can be too low FT3. If you get heart palpitations as FT3 creeps up ( I am not talking of over dose here, if pulse and temperature become high, you are overdosed), then looking at ferritin, cortisol level and sex hormones is the next step. I assume you don’t want to live with low FT3 and hypo symptoms for the rest of your life. If you don’t, you need to figure out where the problem lies. Of course, if you feel great with a low FT3 (under midrange), you don’t need to change anything. I have yet to see anyone doing great with a low FT3 though.
I personally feel the great difference when supplementing sex hormones, both estradiol and progesterone, you can read more here Female hormones, and vitamin K2 and magnesium . Especially natural progesterone and Vit K2 work wonders for my heart.
Low cortisol is a major cause of heart palpitations in us hypo thyroid. If we have had low FT3 for a long time, our cortisol has most likely gotten low. Be sure to take some T3 before going to bed, or follow the CTM method of setting the alarm to 2 hours before you are to get up, and take some T3 there, going back to sleep after. As T3 is needed to make cortisol .
Low ferritin is another common cause. Many can have difficulty raising their ferritin, myself included. Remember that B12 is very important for iron uptake.
So all in all, a FT3 much under midrange is not a normal, healthy FT3. The T3 the body produces is better tolerated than when ingested, esp. synthetic T3. Also, if you don’t convert, you need a higher level than what is normal in healthy people, which is between 4,7 and 5,2 app. You will need a buffer.
I personally find NDT to be much easier to tolerate. I can’t take synthetic T3 at all. So the first thing to do is maybe switch to NDT and see if that takes care of the problem, if possible.
Be well, Liv
Going crazy with Iodine
I am very troubled by what I observe in Iodine groups. The other day, I read a comment by a woman in “Iodine protocol group”. She had been taking 6 to 8000 mg Iodine at times. Yes, you read that right, and it’s mg not mcg.
Some people are going crazy with Iodine. They seem to believe, if some is good, a lot is even better. NO! These people are very poorly informed, they make a lot of claims, and cannot document what they are postulating. Like this particular woman, she claimed, people used to get between 300 and 1000 mg Iodine a day earlier. Which is absolute BS, of course. When I asked her when this was, and please document it, there was radio silence. Very surprising.
What is so disturbing, is that they dose their children and animals with mega doses as well. This woman, her daughter dosed her two babies with 50 mg. Had done since they were born. This is the worst I have ever seen. 50 mg for a newborn! OMG! When I wrote in my comment, I find this scary, the woman replied, yes, she had found it scary as well. In the beginning. I am speech less. Who gives a baby something they are scared to give them? I call this child abuse. You are taking a huge risk with a child’s health, may give it a life long thyroid disease. And why? How can a baby need 50 mg of Iodine?
I think comments like this ought to be deleted by admin. It’s dangerous and totally irresponsible. Dr. Brownstein recommends dosing children with 250 mcg pr kg body weight in his book ” Iodine, why you need it…”. But he also writes, one should not dose a child with high dose Iodine on one’s own, but leave that to an Iodine literate doctor who can properly test and follow up on a child’s laboratory results. Very important this. Not giving a child high doses without checking the thyroid and thyroid anti bodies.
I hope you reading this, agree with me. And that you realize how crazy this overdosing is. The same goes for animals. I see people giving their pets large doses. Never even thinking, that they might damage the animal’s thyroid. Iodine and ignorance can be a dangerous combination. Harm yourself, not others. if you have to harm anyone.
Be well, Liv
Good news on new T3 medication
23th of June, 2021
In some countries, one can get sustained release T3 today. In others, not. Here in Scandinavia one cannot get it. I really don’t know if the sustained release T3 we already have, is better than ordinary Lio or Cytomel. I have not tried it myself. I believe it can be quite expensive. Paul Robinson writes about it here
So many struggle with side effects from T3 medication, especially women. I have these issues myself, so I know from personal experience. I don’t like synthetic T3 at all. I get heart palpitations and just a general feeling of nervousness.
It’s the FT3 peak that causes the most issues for people. So getting a smaller FT3 peak is very important. You can read more on this in my post here
Now there is actual trials with a new T3, poly-zinc-liothyronine(PZL). The regular liothyronine is bound to natrium. PZL is bound to zinc.
Alexandra M. Dumitrescu et al gave 3 groups of healthy people either 50 mcg lio, 50 mcg of PZL or placebo. The same people were randomly assigned to these groups at several occasions. The results were quite distinct. On lio, the FT3 peak(MAX) came 2 hours after intake. On PZL it came 1 hour later. The MAX was 30% smaller on PZL. And the halftime was much longer. You can read the study here, EXTENDED ABSORPTION OF LIOTHYRONINE FROM POLY-ZINC-LIOTHYRONINE (PZL) IN HUMANS
Note that Antonio Bianco is a co-author. You might recognize his name. He is an important scientist in this field. Moreover, he is connected to Synthonics. Inc and Allergan. The first is a pharmaceutical company involved in adding metals to drugs for better absorption. And Allergan is of course the producer of Armour thyroid.
So lets hope this new T3 medication becomes available soon. And that it won’t be very expensive. NDT has become very expensive and hard to get, and many thyroid patients are left between a rock and a hard place. Not doing well on synthetic T3, but not able to afford the organic medicine. Keep in mind though, some people will only do well on the organic medicine. I believe I am one of them. I get massive side effects from T4 meds at least.
I think it is great that the pharmaceutical companies and scientists are trying to provide us with better thyroid meds.
Be well, Liv
Levothyroxine, an unstable drug
31th of August 2021
In the US, there is a lot of focus on the inconsistency of NDT. The truth is, Levothyroxine is very inconsistent. You can read more about concrete cases here
I am so happy for this new study from August 21, Levothyroxine sodium pentahydrate tablets – formulation considerations . The authors are trying to understand why Levothyroxine is so inconsistent. Levo is the active ingredient in all synthetic T4 meds, Synthoid, Levo, Eutyrox, Tirosint.
Why I am happy about it, is because many people have serious side effects on Levo. Myself included. I realized this only a couple of years ago. I have currently been on NDT only for some years. I took a NDT a while back that contained only 35 mcg T4 pr 60 mg, and my FT4 became very low. I got the bad idea that I should add a little Levaxin, 25 mcg., to my NDT. This was in 2018. That was a bad summer. I felt tired, my migraine came back, I had a rheumatic aching in the upper back. I didn’t connect the two. But after I added 25 mcg. more, I realized, it was the Levothyroxine! And a few days after discontinuing the Levo, I felt like myself again.
This made me realize, just how bad side effects the Levo can cause. I also realized, that the chronic migraine I got a few years after starting on Levo, 20 years ago, had to do with the Levo. The chronic migraine, the tiredness, the contraction and tension in my back, neck and shoulders that made it more and more difficult for me to work and function, this wasn’t just low FT3 levels. It was also side effects. I did not HAVE low FT3 levels in those first years on thyroid medicine.
What does the study say?
I have so far only read the abstract. The study is so new, I haven’t been able to get the full text yet. And I won’t pretend to understand the implications of these chemical reactions they describe. i don’t know much about chemistry. They are mainly looking at reasons for the inconsistency in hormone content in the Levo, how the pill deteriorates. But I think, maybe some of these adverse chemical reactions they describe, also can be the reason why so many have side effects. We are talking about, how the fillers in the T4 meds can cause issues. But NDT and T3 meds also have a lot of fillers. In Denmark and Norway at least, I have had a look at how many have reported side effects on the various medicines. There are heaps of complaints on T4 meds, and very few on NDT. Of course, much less people take NDT than synthetic T4.
Two adverse chemical reactions
The chemical formulation for Levothyroxine, is levothyroxine sodium pentahydrate The authors describe 2 chemical reactions causing changes in hormone content:
1 Hygroscopicity; the pill changes because of humidity.
2. Microenvironmental acidity
Because of these conditions
“the pentahydrate can dehydrate to highly reactive levothyroxine sodium monohydrate, or undergo salt disproportionation to the free acid form of the drug”
I don’t understand the implications of this. They write “highly reactive monohydrate form”. Reactive is never good. If these chemical changes in the drug only make them sub potent, or if these new, unwanted forms of the drug can also cause side effects, I don’t know. Reactive is a term used to describe inflammation.
I am also wondering about Tirosint. So many feel better on Tirosint. In Tirosint, the levothyroxine is suspended in water and glycerin, inside a gelatin capsule. Does this make for other chemical conditions compared to the pill form?
I will update this post when I have gotten the whole paper. Maybe there are some answers there.
Can the FDA detect these changes?
No, they can not. When the FDA test Levothyroxine containing meds, they can not detect these deteriorations in the drug with their current testing regimen.
I have hoped for some time, that Levothyroxine will be studied. I am even more concerned with side effects than consistency. Variations in hormone content we as patients can protect ourselves from, through testing and taking our vitals, read more on that here Please don’t misunderstand me, I am not saying, it’s not serious. It’s very serious. Because so many thyroid patients are unaware. They don’t know where their thyroid levels should lie, read more here , and they don’t know what their vitals should be or how to take them.
But we CAN protect ourselves against inconsistent hormone content. But we cannot protect ourselves against side effects.
I hope studies like this one, showing chemical changes in the drug, can lead to focus on side effects from the drug. Please, someone, study this. Millions are taking Levothyroxine. What if lots of these people are having serious side effects? Actually, many do. I see that in the thyroid groups every day.