It has been a while since I have written in this forum. I was providing quite a few updates in the course of getting Low Level Laser Treatment (LLLT) in Russia, which turned out to have really quite disastrous effects.
As a result I went to get a second opinion to another doctor who was familiar with the use of LLLT for the treatment of thyroid issues and in him I have found the guru and master of all things thyroid, which I have not found anywhere else.
I have documented my journey in a few videos, which I have posted on youtube, which can be found here: youtube.com/channel/UCvocCB...
The method is that of doctor Andrey Ushakov, a "normal" doctor, as in, not an alternative medicine person, who just has an immense amount of knowledge on physiology, endocrinology, neurology and immunology. He is the author of several books on the thyroid and is the designer of a protocol for diagnosing thyroid health using ultrasound, as well as his own methodology of categorising thyroid disease. He has a rather remarkable, yet elegant perspective on why we get thyroid problems and an incredibly proactive and helpful methodology for adressing thyroid disorders - both hypo and hyper. The root, it seems, is the same issue.
I would love to hear the community's feedback on the method, which I I outlined in the videos above.
This is my first attempt of posting videos on the internet, so please be kind!
All the best
Genia
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ThyroidLadyLondon
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For those of us who don't have time to watch your videos right now, can you at least give a hint here of what your current situation is? Is your thyroid problem completely cured by this treatment or are you still taking thyroid medication?
Hi Stitch Fairy. In summary, I understand my thyroid issue, whereas before I did not. From this understanding I have followed a path of taking pressure off my thyroid and have been able to reduce my medication quite substantially, and control how much I take depending on what I need =) Hope that helps!
I guess what I’m struggling to understand is the mechanism behind being able to reduce thyroid hormone replacement. Thyroid hormone replacement isn’t a supplement. You can’t use it to “top up” your thyroid hormone levels—the pituitary feedback loop doesn’t work like that.
Now if LLLT allowed you to cease taking thyroid hormone replacement altogether—then yes, I could see that being fantastic. But on what basis is thyroid hormone replacement being reduced? Changes in TSH levels? FT4/FT3 levels?
This reminds me of some doctors who claim they can "cure" thyroid disease by using iodine and other supplements...in my experience, atrophied thyroid glands don't just regenerate, and going off or reducing thyroid hormone should not be a priority for hypothyroid patients.
This is not a doctor who claims to cure anything with iodine supplements. But you do need iodine for thyroid hormone formation.
There is a difference between an atrophied thyroid and a thyroid that has gone through diffused structural destruction, as is the case with Hashimotos.
You say ‘in your experience thyroid glands don’t just regenerate’ what experience is this?
What say you to the significant percentage of women that recover from postpartum hypothyroidism? Is this irrelevant? Or different? How? My own thyroid has changed in size from about 7,8 cubic cm to over 11 in a year, based on ultrasounds. I am taking less levothyroxine and showing ‘in range’ lab tests for TSH, T3/t4. If that is not ‘recovery’, pray what is?
As for reducing or coming off levothyroxine, no that should not be the priority for hypothyroidism patients. Maximising conditions for optimal health outcomes should be, using whatever information and expertise is out there to allow them to do so.
I say that as a Hashimoto’s patient. As far as I know, post-partum hypoT may very well be transient but then there has not been destruction of hormone-producing tissue.
The statement that Hashi’s can be cured resurfaces here regularly but I rule it out. Hormone levels may fluctuate, yes, but I have yet to see convincing evidence that full blown Hashi’s can be cured in the sense that your thyroid gland becomes fully functional permanently again. If that was a fact, doctors would not put patients with Hashi’s on drugs but would wait for their glands to heal themselves first.
Mixing Hashi’s and postpartum hypoT is like mixing apples and pears IMHO.
Ok, so this is a question I posed to the doctors in the UK when contemplating starting to take Levithyroxine - have I stopped making thyroid hormone completely? Or do I still make thyroid hormone? Will taking levo jeopardise me making my own thyroid hormone? I was not getting any answers to these questions, so you have to go from first principles. At the point when your blood work shows that you are making a low amount of t4, your TSH tends to go up to stimulate your thyroid more, but without effect. But you are still making the t4, otherwise where would it come from in your bloodstream? So “topping up” is exactly what we do with levothyroxine. We are not fully replacing our thyroid function, we are partially replacing our thyroid function. And because the standard treatment method in the UK gives no room for the concept of thyroid regeneration and creating conditions for this, the doses are almost never reduced, apart from when patients experience extreme hyper symptoms, because their TSH has been ‘controlled’. There is no protocol that I know of for getting off levothyroxine. Those women who I have found that were able to get off levo have done so exclusively on their own accord and not with the assistance of their GPs. The only thing I have heard in respect of thyroid regeneration from the doctors at my GP practice has been the rather vague concept of ‘spontaneous regeneration’ and citation of statistical likelihood of recovery from post-partum thyroiditis after the first and consecutive pregnancies.
I test my TSH, T3/t4 free and total about once every couple of months now. I used to more frequently.
The laser did not improve my thyroid. The likelihood is, it stimulated my nervous system, which in turn stimulated my already over exerted thyroid. What did improve my thyroid is taking rest, hiring two nannies to take the children off my hands and night weaning my daughter so that I slept full nights for the first time in four years. Also generally taking it easy, taking sedatives to sedate my nervous system and TRYING to reduce the stress in my life.
At the point when your blood work shows that you are making a low amount of t4, your TSH tends to go up to stimulate your thyroid more, but without effect. But you are still making the t4, otherwise where would it come from in your bloodstream? So “topping up” is exactly what we do with levothyroxine. We are not fully replacing our thyroid function, we are partially replacing our thyroid function.
I think I’m still going to disagree with that, sorry. What you’ve said there isn’t my understanding of how the pituitary feedback loop works. There’s a very fine balance. If the pituitary senses what it considers “sufficient” thyroid hormones in your blood stream then TSH is not produced. And for some people, taking even 25mcg of levothyroxine is enough for their pituitary gland to conclude it doesn’t need to produce TSH. No topping up takes place—you just feel ill instead until you’re put on a decent level of thyroid hormone replacement. We see that here all the time—people being left on a stupidly low dosage of levothyroxine, sometimes for years, by doctors who don’t understand that levothyroxine doesn’t work like a vitamin supplement.
I’m not saying that it isn’t possible to change a few things and improve the health of your remaining thyroid and its sensitivity to TSH in the early days of Hashimoto’s—sometimes it is—but it’s a question of going into remission rather than cure and unfortunately most people with long standing thyroid issues won’t benefit.
‘If the pituitary senses what it considers “sufficient” thyroid hormones in your blood stream then TSH is not produced. And for some people, taking even 25mcg of levothyroxine is enough for their pituitary gland to conclude it doesn’t need to produce TSH. No topping up takes place—you just feel ill instead until you’re put on a decent level of thyroid hormone replacement. ‘
Ok. So take a patient who feels unwell and their TSH is going up. They take 25mcg if levo, their TSH goes down, because it senses that there is ‘enough’ thyroid hormone in the bloodstream. Do you mean to say that there was NO thyroid hormone before the levo is taken? Or an insufficient amount of it? If the latter, then levo is ADDING to the T4 produces by the body, not fully replacing it.
On the latter part, I’m not sure that you mean by ‘improve the health of your thyroid and it’s sensitivity to TSH’. The thyroid will be sensitive to TSH, unless you have TSH receptor antibodies. This business about remission and ‘cure’ to me is irrelevant. The question is - can you take steps to improve the state of your thyroid, regardless of how long you have had problems. It would be wonderful to have a ‘cure’ but that’s an awfully high bar to jump. Whatever mechanisms there are to ‘improve’ the condition of the thyroid presumably follow the same medical principles for those with a little bit of damage and a lot of damage to the thyroid.
Unfortunately, the reduction in TSH due to 25 micrograms of levothyroxine can be such as to mean there is little or no increase in T4 in the bloodstream. (It is even suggested that it can end up actually reducing T4. If the reduction in T4 production is greater than the amount absorbed from a 25 microgram tablet, that could be true.)
If you look at it like that, a low T4 dose seems not to be a simple addition to our remaining ability to produce T4.
That’s interesting. Is there reliable data on this helvella? We know that there are factors that impact the absorption of levothyroxine, like caffeine for example. Could it plausibly be the case that with the lower doses the margin for error with measuring the impact of smaller doses administered could be subject to greater distortion?
I might be able to find something. But we have seen many people post here having been started on 25 micrograms. Their Free T4 having not risen, or fallen.
‘The laser did not improve my thyroid. The likelihood is, it stimulated my nervous system, which in turn stimulated my already over exerted thyroid. What did improve my thyroid is taking rest, hiring two nannies to take the children off my hands and night weaning my daughter so that I slept full nights for the first time in four years. Also generally taking it easy, taking sedatives to sedate my nervous system and TRYING to reduce the stress in my life.’
You’ve lost me here. So the doctor didn’t do anything at all to improve things then. Was it the doctor that recommended getting a nanny and being sedated? Was that the proactive elegant perspective and methodology?
Yes, I watched a couple of your videos. To be honest, I found them quite difficult to follow and rambling. You seem very nice, but there’s nothing there you couldn’t have found out by googling for information about how the thyroid works.
As someone with Hashimoto’s, my thyroid has just about given up and shrivelled away so I can’t reduce my Levo and neither can most other people without making themselves ill. What they can do is try to work towards taking an optimum dose so they feel well. Especially if they can’t afford a nanny ‘to get children off their hands.’
I also disagree with what you say about exercise. Now I’m close to my optimum dose and feeling well, I’m doing a lot of exercise again. My endo is right - I probably will always feel more tired than someone who has a functioning thyroid after more strenuous exercise, because my energy is not a limitless supply, but I can handle that and I’m learning my limits. And being back out there doing stuff again makes me feel good! 🤸🏿♀️🥛
Reapectfully, I never claimed to be a TV presenter and I didn’t write a script. I just spoke what was on my mind. If it comes across as rambling then that’s just me. I built my confidence as I went along - this was my first ever video recorded for the internet, and I am not a hugely public person. Maybe I should have spent that monster nanny budget on a TV crew, and a script writer, but too late, eh.
There is no information anywhere that I found that speaks about the role of the peripheral nervous system on stimulating the thyroid, without involvement of the hypothalamus. The perspective that Ushakov puts forward about ‘autoimmunity’ is completely novel, and data and information on thyroid regeneration is incredibly hard to come by. So again, if it isn’t for you, then it’s very easy to pass by things online that don’t make sense to you.
Like you, I am also trying to find an optimal path to health, and like you I am trying to make sense of information that is out there and fill the gaps in my understanding where gaps exist.
At the point where I hired two nannies I was barely able to get up during the day, my husband travelled three weeks out of four and I did not have family around. They were with me for a month in Russia and I am incredibly grateful to have been in a country where we could afford them for that limited time. They were without a doubt a part of my recovery story.
Well, I watched about five minutes of one of your videos, and the following statements strike me:
"This theory has not been substantiated anywhere else" (that is, the theory by your Russian doctor about thyroid regeneration).
About thyroid function, you say: "If you put high pressure on the thyroid for a long time, the follicles will become depleted and not able to keep up". You go on to say that "antibodies will then come and clean up the dead tissue".
Well, if it worked like that, anyone who has ever been stressed would end up with thyroid disease...! You make it sound like the thyroid gland is simply suffering from burnout and needs rest to recover.
You make it sound as if the antibodies are a good thing and help clean up our damaged thyroid. My understanding of Hashimoto's is that our immune system mistakes the thyroid gland for an intruder and creates antibodies that attack and eventually destroy its hormone-producing cells. This gradual destruction of the thyroid gland will eventually lead to hypothyroidism.
In my opinion, those five minutes I watched were full of factual mistakes and reveal a basic misunderstanding of how the thyroid works. I know anyone can post videos on Youtube and you don't need to be a doctor, but you should not make statements like that if you cannot corroborate them. If anything, you create more confusion than anything, and I honestly cannot see how these videos can help anyone looking for objective information on thyroid disease in general and Hashimoto's in particular.
a) yes, it is a theory, and I put it forward as one. The substantiation of its efficacy for me, is in the results of the patients of the clinic, of which I am one. These results are published in Russian, and indeed Ushakov himself publicises these with patient's permission.
b) I 'dont make it sound', but I state exactly that. That if the thyroid is stimulated to make high output of thyroid over a long period of time, it will become overexerted, eventually damaged and unable to make thyroid hormone at the same speed from further stimulation. It doesn't mean that you get thyroid disease from being a little bit stressed. It does mean that if this goes on for a prolonged period of time from different types of stressors, be that other disease, pregnancy, sleep or nutrient deprivation, personal or work stress you are at greater risk for developing thryoid disease.
c)again, I don't "make it sound" but I state that the further component of Ushakov's theory is that the antibodies are not mistakenly attacking the thryroid, they are performing a function of preventing further damage and where damage occurs, the dead cells are removed through a process of phagocytosis. Yes, I am aware that the standard view of the profession in the UK and elsewhere, Russia included, is that antobodies are "attacking" the thyroid for reasons unknown. It seems to me that this is just a different way of looking at the same incident. One side says there is an "attack", as in intended damage, the other is that, having removed emotive language, you are looking at an event of an antobody attaching itself to an antigen with a specific purpose, which may not be to mistakenly damage but rather to perform a different function which is aimed at protecting the organ from further damage.
And since we are trading "opinions" it is my opinion that if you had a treatment somewhere for a disease that is eating up your life, however obscure it sounds to others, where you deemed to have received excellent, albeit unorthodox care, you tell people about it. Which is what I have done, despite all the risks of sarcasm and ridicule that one risks when putting yourself on the internet. So, thanks for the 5 minutes you have dedicated to me, but maybe we leave further exchanges to those for whom my story was actually useful, and made some sense.
Ca 90% of everyone with hypothyroidism have Hashimoto's. Are you seriously suggesting they ended up with Hashimoto's because they have been stressed or sleep-deprived...as someone pointed out in a previous post, then all humanity would end up with thyroid disease?!
Then, by analogy, I'd assume that reasoning also applies to Grave's disease and thyroid cancer...?!
From reading your most recent posts, and not having seen your videos, I get the impression thyroid disease is something that can be prevented. I hope that won't give people false hopes.
Prevention of thyroid disease is a very complicated topic. How much control do we have over what happens in our lives? But you can take steps to help yourself once you have thyroid abnormalities, and the thyroid does heal, just like other parts of our bodies, under the right conditions. Everything I have written and spoke about is about trying to understand what those conditions might look like and why they may help.
Also, it seems out-of-range thyroid antibodies in Hashimoto's (anti-TPO) can precede abnormal labs (elevated TSH, low free Ts) by several years. That would contradict your theory that the antibodies are created once the thyroid is destroyed to clean up the damaged tissue.
I'd be interested in other members' views as well!
Of course they can. If you are showing TPO antobodies in the "normal' range, you still have them, but no one is diagnosing you with thyroid disease. Indeed in the UK, apart from the use of antibodies for categorising Hashimotos nothing is done about them at all.
It seems like an arbitrary definition to say that if you are just in-range, you are healthy, even though you HAVE TPO antobodies. And once you are out, irrespective of how much, you have Hashimotos. People with "in-range" antibodies are making T4, and people "out-of-range" are making T4. The difference is not in how many antibodies you are making but rather how much capacity your thyroid has to make thyroid hormone. If over time you have sustained a lot of damage to the thryoid tissue and your capacity to make it is compromised and you will begin to show high TSH and low t4. There is no inconsistency.
Hi there Genia, i've previously read about studies done using LLLT on chronic A/I thyroiditis with interest, as it seems to improve thyroid function to a degree. Could you please share your initial experiences, the ones you call 'disastrous', and how they differed from subsequent treatment at Andrey Ushakov's clinic?
Hi Kimmie4. Yes, I have also read the same studies from Brazil, and there is also similar work in the Russian medical literature, which is what made me give it a go. I was also impressed by the reported increase in thyroid hormone production and the apparent safety. I have also received low level laser treatment at the Hammersmith Hospital dermatology department before, which was extremely effective. So I thought it would be safe and effective. It turned out that I was wrong on both counts.
I received the treatment in Russia, in a city called Ryazan. I'd have to look up my records for the exact frequency and wattage output, but I was assured it was the "standard" treatment. I received ten 5 minute sessions over 10 days. I started feeling unwell after the second treatment and took break, but then resumed the treatment, To be honest I didn't initially equate the symptoms with the laser. It only became obvious when I finished the whole course of the treatment and became really really unwell.
After two days of the treatment, I had what I can only describe as an unprovoked panic attack. I had only ever had one panic attack before, several years before having any thyroid problem, so I put that incident down to tiredness, generally feeling unwell, childcare and life stress. I took a break of about a week from the treatment and then returned to complete the course. Within a few days I had another sort-of-panic-attack but this time with loss of control and convulsions. I was picking up one of my children from nursery and collapsed on the nursery floor, convulsing and shivering, with my whole body feeling tense and rigid. I felt as if lights, sounds, and generally stimulants, like children's cries were hugely amplified and as if my body just wanted to go into shutdown. I felt intense hunger and like i wanted to be somewhere dark, quiet and safe. These attacks with convulsions continued almost every day for about two weeks and then began to ease off. I kept a diary of these events as well as a diary of what I was feeling.
Eventually I went back to the clinic where the laser treatment was performed, but they could not make any sense of the symptoms. The specialist and academician who championed the treatment in Ryazan has unfortunately retired shortly prior, so I think the level of expertise of remaining doctors was poorer.
It was then that I started looking for other clinics that offered the laser treatment for thyroid disorders, so I could get a second opinion, and found Ushakov's clinic in Moscow. When I went to see him, he told me that he had had a patient years ago who had a similar reaction to the laser treatment, and that in any event he no longer used laser to treat his patients. At the moment, he works with using a specific wavelength of blue light on some of his patients, but only because he has actually made sense of why we react in the way we do to light and to the laser, which is all linked to our autonomic peripheral nervous system. When the laser is applied to the thyroid, it directly stimulates the nerve endings underneath the skin on the neck and next to the thyroid. The nerves, in turn, stimulate the thyroid to make more thyroid hormones. It is quite a strong shock to the nervous system, which some patients, who already have a highly sensitive and overtired nervous system, react to badly, like I did.
This aspect of safety is not covered in the medical papers, including the Brazilian one, below, because the only aspect of safety they examine, is the formation of nodules. The effects on the nervous system, which the laser will clearly reach, as the laser penetrates a few centimeters beneath the skin surface, are not considered at all.
Furthermore, the aspect of tissue regeneration is merely hypothesised, and in no way proven, because other studies of LLLT cell proliferation effect were focused on rheumatoid arthritis and joint pain, and not on the thyroid (4th para Introduction, below).
Ushakov recommended that I take sedative medication during my "panic attacks" which worked extremely well and helped me to come out of that extremely difficult side-effect phase. He conducted a very detailed ultrasound to assess how much healthy tissue I had in the thyroid along with the usual set of thyroid blood tests. His recommendation for treatment was one I describe in my videos, which was to rest, sedate and reduce energy expenditure.
In his clinic he uses a blue light physical therapy, which shines onto the spine in a particular sequence to mildly sedate the nervous system, which in turn reduces pressure on the thyroid, and allows it to regenerate more easily. This is apparently particularly effective on hyperthyroid patients, since the cause of the hyperthyroidism is the same - overstimulation of the thyroid by the APNS, just the adaptation mechanism is different.
In short, I would not recommend getting LLLT, this may shock the thyroid to make more hormone in the short term, but at the expense of longer term recovery. Indeed this is confirmed by the Brazilian study results from 2018, all the patients in the laser study eventually needed the same level of levo as at the start of the study. Longer term, to give your thyroid the best chance of recovery, reduce energy expenditure in every shape and form, and reduce pressure on the thyroid in that way. It will regenerate by itself, just like all other parts of our bodies do.
First, I'm so sorry to hear you experienced such a bad reaction to LLLT, which to me sounds like a very wrong protocol that they followed at a clinic.
And I also want to thank you for sharing your experience and responding to comments, it's useful to read different opinions to form a more complete picture.
Currently, I'm receiving LLLT at a clinic in Harley Street, London. Yes, there were Brazilian studies that were successful, followed by studies in Turkey on (I believe around) 300 women and they did they own studies with the lady who works at the clinic.
None of the studies showed that damage was done to the thyroid, most women reversed their anti-bodies
The treatments are done just 2 times a week for just 2 minutes on the thyroid itself and at your clinic they wanted to do it every day and for 10 minutes. That's not right and that's not what they did in the studies at all. 2 mins at a certain frequency 2 times a week, that's it.
We don't know the type of laser and frequency they used in Russia, but it all sounds wrong to me. Of course your experience is valid and worrisome, and you went there hoping it would do you good, but it sounds to me they didn't follow the right protocol.
I feel that if people were collapsing here in London after laser treatements, there's no way those clinics would still be open after 10 years. I'm sorry they made it worst for you in Russia.
So far, I had 4 out of 6 sessions, they only suggest 6 sessions in London. After my first session, my anxiety disappeared completely and has not returned. I've been feeling calm and happy. The calmest I felt and as soon as I did my first laser, I started to feel this way.
I can't provide the results yet as it's too early to test, but I will and post it on this forum when I have them. I measured my thyroid levels right before my 1st LLLT session, so I will have a benchmark.
The lady who is giving me treatments has shared many stories with me and she's been doing LLLT for 10 years. One of her clients was on thyroid medication for many years, and not only did she came off it completely after LLLT gradually, 5 years on without repeating laser again, she still has healthy thyroid and still doesn't need the meds.
I have read in the studies that a small % of people saw their anti-bodies increase with the treatment. So I do feel a little bit concerned with that. The lady in London said that just 1 of her patients saw an increase. But most of them saw a reduction or reversal. I hope I will be one of them.... Hashi and meds for 20 years ... so a long time here and I'm on a healthiest diet one can eat and leading a very healthy life and meditating and all that.
I only decided to do LLLT after one of the ladies had shared how her Hashi antibodies went down to zero after being raised for year and then her friend repeated it after her and saw the same effect. Studies are one thing, but those 2 ladies were real people in front of me, so I decided to give it a try as well and I found a place in London the specializes in it (and it's hours from where I live, so I have to travel...).
4 sessions in, I dropped my meds by a tiny amount, just because the previous dose was too high and I was having hyper symptoms. I can't test anything yet as it's too early, and it's only a small drop by 12,5 mcg, so I can always increase and go back to the old dose if I'm getting hypo symptoms, but taking the old dose got too much after 3 sessions. But I will keep this forum posted.
I agree re the nervous system. It has an effect on hormones, of course. It's central to everything and stress reduction is good for healing. Though I have to say my stress levels have been low in the last weeks, I've had lots of rest, and my thyroid levels still got worse ... Will see how LLLT might help.
I'm glad to hear what you did helped you. I've heard mixed opinions about Dr Ushakov and I've heard of him. But if he helped you, that's the main thing. I have not heard about blue laser or saw any studies about it on thyroid. LLLT has, on the other hand has been well studied.
You shared your post 5 years ago. How are you feeling today?
Thanks for your message, and yes it has been a while since I have written here. Time flies!
I'm really interested how you get on with the laser treatment and it would be great to do a comparison on the wavelength being used and frequency etc with what I received. The idea is the same I think - to impact the nervous system and I'm thrilled to hear that you felt well afterwards (calm etc), this speaks to the work of the parasympathetic nervous system response, which will be great to ease up the pressure on the thyroid.
Can I ask how much mediacation you are on? have you been taking the same dose for 20 years?
I am off levothyroxine, which I am incredibly grateful for, as the side effects were horrible for me. The anxiety, the blood pressure highs and lows, the hunger, the exhaustion, the brain fog.. I still have regular (ish) blood tests to check that everything is ok, and sometimes there's a slightly raised TSH here and there but the t3 and t4 is thankfully all normal and generally I feel well. Im continuing with supplements, including iron and iodine in a good multivitamin. My lifestyle is still hectic and a bit chaotic with a stressful job and two primary school kids, but overall I feel able to deal. I take being tired more seriously now and I try to rest if I am tired rather than ploughing on as I would have done before.
With regards to the antibodies, I wouldn't stress about them being high, this is just your immune system at work. In fact, if they are high, this is indicative of repair processes at the site of the thyroid.
If you are open to it, would love to get the name of the clinic you are using via DM!
Best best wishes for your treatment. Even if it makes you feel calmer, it is already worth it. Please let me know your progress and how you have found it!
Thank you so much for your reply! I'm so glad to read that you're doing well and are off your meds. Despite taking my meds for such a long time, I still have faith in coming off them one day and that there will be a technology that will help with that, or something that will help.
I've been on 75 mcg for a long time, like 15 years. Or more? Without changing, thanks to my diet and lifestyle.
But ... Last year, after returning back to UK from a warm and sunny climate, I decided to do some cold showers to help me mentally in through these cold and dark winters and I took some iodine ... and my thyroid went out of balance completely (cold weather does that to me, cold showers were worst and iodine threw it out of balance even more). I tried to increase levo, and I needed to increase, but my body reacted so badly with heart palps and HBP, which I never ever experienced before, I went to A&E like 9 times over a space of 4 months ...
Eventually, we had to go back to the warm climate again as I was totally stuck here being very hypo on lower dose and not being able to increase at all due to my reaction. In the warm climate, where my TSH is ALWAYS balanced and under 1 (on levo 75), I managed to increase the meds (I still needed to increase them) and was starting to feel better. If I take the right dose, overall I'm ok on levo. Before pregnancy and birth I was an endurance athlete and my thyroid levels were at their best when I was very active. I would just take my 75 mcg, and go on about life, living better than most people (my T3 on levo back then was 50-65% off the range!). I never even went on any thyroid forums, I felt good, though I always wanted to get off the meds.
So we came back to UK again a few months ago, and my levels went off again, my thyroid needs a lot of sun, so I increased to 88-100, then a few weeks ago to 112-100 as my TSH went out of balance. I started to feel better with the increase and then found LLLT as I really-really want to keep on going down and down vs up and up. I live pretty well on levo, I tried NDT too, but returned to levo, but I do still have some side effects. My dream is to come off them. I'll do whatever I need to do and go to the Moon if I had to to get there.
Do you mind sharing how much thyroixine were you taking and how you managed to come off meds? Was it all to do with stress reduction, GF and healthy diet, supplements and lifestyle (etc. etc. most of us know what to do), or did you do anything else out of the box that made the difference in the end?
Btw, I can't take any amount of iodine at all, even super small. It ALWAYS throws my thyroid out of balance and it takes me month to balance it again. I'm not the only one, some people can't do iodine either. So something to watch out for.
I will make a separate post on LLLT here when I get my results and will share it either way. Another therapy that has been BEYOND amazing for me is Ozone therapy and vitamin C IV. And acupuncture too. I'm a fan of all those three, on top of the diet, supplements and lifestyle of course.
But that sense of calmness has been real and it's been there since session 1 of LLLT. I feel calmer every time I do it. Before LLLT I was so anxious, constantly - that's not my real me, I'm a calm person by nature, just the thyroid doing it's thing.... After LLLT I've been feeling like a Buddhist monk, not kidding!
Oh Juliet, what a story. I'm totally with you on the struggles of managing "the dose"..
If you think about what we use thyroid hormones for, it has to do with anything we spend calorific energy on. Maintaining core body temperature in homeostasis is one of the things we spend energy on every single minute. Taking a cold shower lowers your body temperature and you quickly need to release more energy to get back to homeostasis. With someone with a healthy thyroid, the nerve endings in your skin would sense the cold, your sympathetic nervous system gets stimulated, energy is released, thyroid is stimulated to make more thyroid hormones. Where you are managing your thyroid hormones manually, imagine this as being a sudden depletion of the t4/t3 storage, which you are not compensating endogenously. In diabetes a sudden depletion of blood glucose leads to hypoglycemias. I don't know what the thyroid equivalent of this would be, but it is why you feel terrible afterwards. And because half-life of thyroxine is longer than with insulin, the internal management of adequate levels is more complicated than with, say insulin. Even if you take a higher dose on the day you feel undermedicated, you can end up being overmedicated the next day or the day after, as the internal concentration will always be a little bit out of synch with what you are actually doing. Hence the eternal see-saw of "anxious with heart palpitations" to "drowsy, cold and sleepy" and then back again.
The other issue is that when initially diagnosed, "the dose" gets increased by typical doctors very quickly to full or almost full thyroid replacement. 100mg is what a typical person with a fully removed thyroid is usually prescribed. Those of us who just yesterday were "a bit off" but clearly still producing thyroid hormones are very quickly put on 50/75/100mg a day, because TSH readings are given more attention than t4 and t3. So if, for instance, when you are newly diagnosed your TSH is 15 but you have adequate t4 and t3 (the latter rarely even tested), the focus will be on for some reason reducing your TSH. So you are left with already producing t4 and t3 and then ALSO being given synthetic t4 equivalent to 50/75/100 percent of what your body is already making.
This is why I was quite comfortable to start spacing out my levo doses, the 75 every day became 75 every other day, then it was a 50 every other day, then every two days, three days. This was a process of many many months, certainly not overnight. At the same time, I followed a protocol, if I could call it that, of "drastic rest" along with iodine and iron and multivitamin supplementation. My diet is pretty decent, I eat everything and I try to eat well, whole foods, meat, fish, dairy, good grains, absolutely not excluding gluten, but not fanatical about it either. Try to be good about sugar, but again, not fanatical about excluding it. Reducing caffeine was a big thing for me, as I relied on it during the "tired" phases. I am an active person in my daily life, but I don't run or go to the gym.. Two kids and a job in the city were enough activity for me! and following the mantra of reducing calorific expenditure equalled to a) staying warm (no cold plunges!), b) sleeping well and as often as I needed, c) resting in the day when I was tired, d) sedation of the nervous system with "over the counter" meds for when I was anxious or over-wired - valerian root and passionflower tinctures I picked up in Spain were great, tried CBD but played up with my blood pressure, and the oldest sedative in the world - a tipple of port or whisky is a known and tested remedy, e) reducing stress - therapy for whatever was going on, hypnotherapy was what worked best for me, d)iron, iodine and multivitamins are always around. I try to eat meat and I have grown to love Korean and Japanese nori snacks for iodine. Whilst the thyroid recovers, it will need iodine to make thyroid hormones. Oxygen, iron, iodine, selenium are the basic building blocks of the hormone. I get that it may interfere with the internal biology when you are on almost full hormone replacement, but for endogenous production, this is a requisite. And you can always test your levels before taking any additional iodine or iron.
I kept a spreadsheet of the medication I was taking so that I would remember what does I took when, and also to track my overall progress, how I was feeling, any significant illnesses or events, how they seemed to impact my wellbeing. Like with what you said about cold weather/hot weather climates. You'd body just knows and it FEELS better - you have to listen to that and do more of that. Interestingly for me the climate didn't seem to make much difference. Lining in Spain for some time, then in the UK and a much colder Russian climate, there was no noticeable difference for me. My biggest depleter was when I was left alone with both kids. So I tried to find ways of reducing that and getting as much help as I could.
Sorry that was a really long read, but maybe some of this helps! I think the longer you are on the meds the longer the adaptation of your body might be to getting off them, but I can tell you from personal experience that it is possible. Even reducing the dose is already a win, as the side effects from levo are reduced. So keep doing what you are doing and listening to what feels right! You've got this!
Such an amazing journey you have been through, so dedicated and you got your results. Well done! You explain it all very well.
I know everyone talks about iodine and thyroid, but I personally still can't take any. Every time I do, my thyroid goes out of balance a lot and it takes me ages to balance it. So I stay away. A bit of nori occasionally is ok. Author of the Thyroid Reset diet book actually takes his patients off iodine and many of them have been able to come off meds after a long time on them when they restricted iodine intake. There is also good evidence how iodine can also harm the thyroid. But if it worked for you, that's great!
My T4 and T3 is usually pretty ok. T4 is always mid range, T3 around 30-35% of the range, e en if my TSH is off. But the moment my TSH goes above 2,5, I get hypo symptoms. Last time I had to increase the meds, my Ts were fine, but TSH of 4,9 and I struggled to function. I always measure it all, but it seems that TSH is just as important in my case. The moment it rises, I feel unwell. If it falls below range, even with perfect Ts, I get hyper symptoms. My TSH tends to react to the weather a lot. I go to a warm climate and it's below 1. I come to a cold climate, and it rises. Definitely no cold plunges here ever again!
Thyroid is just so complex, what works for one person might not work for the other and vice versa. Iodine, for example, is helping you and it harms me every time. I tried ALL different ways of taking it, no matter what it is and how many other supplements I take with it, the type of iodine, or dose - nothing works.
I also know people who are single, financially free, hardly work, do yoga and meditate, eat well, take supplements, sleep as much as they want, etc, etc, but their thyroids are so out of whack.
But I totally agree that stress management is super important and really is key to healing anything.
It's great that you kept a record of everything. I should do that too, though on my 20 year thyroid journey I already know what works and what doesn't for my thyroid. But it's still good to take notes and see trends.
Interestingly, I and my thyroid felt the best when I was doing a lot of exercise, the most exercise I have ever done, training for marathons, doing triathlons, training twice a day on most days, and being at my peak performance. And no kids back then, so all the rest and recovery I needed! So I am not sure I agree re exercise, I think it's great for thyroid, was in my case, but I agree re exercise when you have kids because that changes everything. And it changed everything for me, so no endurance sport here after I had kids. Yet even if reducing it, including a bit of strength training is needed, even with resistance bands at home, just for the sake of bone health.
Can I ask what over the counter meds do you take for sedation?
And how long did it take you to come off your meds completely? How long were you taking them for before that?
I find that Vit C IV works wonders for that. I do 15gr once a month atm, or so. Calms everything down and lasts me weeks. Lifts the mood, you are happy, calm and got wings to fly with great energy. Super great for nourishing adrenals too. And Ozone sauna is amazing too. They use LLLT for anxiety too and in my case it worked wonders. One of those or a combo and might not even need over the counter sedatives! I feel wonderful with all those therapies, the mood especially! Happy and cozy in yourself, great focus and productivity.
I'm so excited to hear the things that worked well. I am familiar with oxygen saunas, I feel like I need to try this!
I think this forum doesn't allow people to advertise and promote specific products, which is fair. So I will say that a passionflower (passiflora) and valerian root tincture worked best for me. The valerian root and sleeping aids also do the job, but there was something about the tincture that worked quite fast - you could feel the release in minutes.
Also, and I mean this in the most medicinal of ways - a shot of reasonably strong alcohol (without excessive consumption!) is an amazing sedative if you are feeling really on edge. It's one of the oldest medicines used by man!
I’m interested to know more. Has Mr Ushakov published anything in English on his theories/ practice?
For what it’s worth I should say that my experience of getting (post-natal) hypothyroidism is exactly the same as the story of extreme stress and tiredness (and in my case, a very large post-natal haemorrhage of blood, that was not compensated for by an infusion). Throw in a traumatic post-natal medical problem akin to a brain injury, a very small baby with colic,
a stressful house purchase and a husband who like yours was always away with work.. I became hypo.
The only two women I know who like me had post natal hypothyroidism also had the same experience of exceptional stress. More so than the average. One of these two like me had a huge haemorrhage while giving birth. She is convinced the loss of iron led to her coming ill and her doctor tells her as much too. She remains hypo whereas the third is fine now.
I don’t know whether I could have arrested the situation at any point, however. I put the fact that my hypothyroidism bloomed into full blown Hashi’s down to the fact that my GP undertreated my hypothyroidism for the next year. Having a high TSH for a long period of time is - from what I’ve read - a risk factor for this.
I am saying all of this not because I agree / disagree with / abstain from anyone re: posts above but because I’ve often wondered how / whether post-natal Hashi’s differs from other types.. and wanted to start that conversation.
I lost blood after both of my births. The first birth was a car crash, like in your analogy - pre-eclampsia, long hospital stay, an induction, epidural, a foreceps delivery, with the mandatory episiotomy. I lost about half a litre of blood and had a blood transfusion. I think i had symptoms of hypothyroidism in the first year, the fatigue mostly, but it was not ever diagnosed. After a year and a half I got better and conceived "spontaneously" . My second birth was natural without interventions and much better psychologically. I did end up loosing about the same about of blood as the first time, following a heamorage and manual removal of the placenta (exactly as fun as it sounds), but this time wasn't offered and didn't feel like I needed a blood transfusion.
So yes, all of that, for background. It was a "more than normal" level of physical and phsychological stress both times. And as you say, add a newborn to the mix each time, the sleep deprivation and the general phsychologica stress that comes with that life change, and it adds up to a lot, Trend-wise though, we have a huge increase in interventions at birth - foreceps deliveries are now about 12% of births, a third are by caesarean, at least half of which are emergencies. Add to this the isolation in which women are now raising children, plus the pressure to return to work, as well as that burden of managing everything at home. The energy to survive and then deal with all of this doesn't come from a vacuum. It makes sense to me that our body's capacity to manage stress is not endless. Despite this trend, I have never seen any studies on birth stress/post partum difficulties and post-partum thyroiditis.
High TSH over a prolonged period of time is a sign that your hypothalamus is continuously putting pressure on your thyroid to make more hormones. That much I think is undisputed whichever way you look at it. What Ushakov argues is that this pressure over time depletes the thyroid tissue, and you begin to see physiological changes in its structure, which are diagnosable. He also discusses how recovery of thyroid tissue can also be seen through ultrasounds. He discusses a case of one of his patients where this can be seen on the scans. You can read the (imperfect) english auto-translation of the post here: facebook.com/doctorushakov/...
One of his areas of expertise is ultrasound diagnostics of thyroid disease. He has authored a book on this, not in English (rus.logobook.ru/prod_show.p....
I have found an article by him in English, but I think it is also auto-translated. It is a meta analysis of studies on thyroid volume. He critiques the current "normal" values, which are used in diagnosing goiters and argues that the average thyroid size is about half that which is used in diagnostics currently.
As regards blood-loss, he has recently written about this on his Russian blog. He writes about a patient from the Russian far north, who became hypothyroid after becoming a regular blood donor. Translating roughly as "the loss of 8-10 % of blood volume impacts the quality of oxygen delivery, which together with thyroid hormone is responsible for release of energy (calories). In addition, this level of blood loss from the body leads to further pressure on the thyroid, as surplus calories are required to be expended to regenerate the required amount of blood cells"
He further writes that in the conditions of the far north, the patient was further dealing with very low temperatures in having to maintain body temperature. So the regular blood donations would have exacerbated the already difficult conditions for her. Change the far north for post-birth trauma, lack of rest and sleep and additional round the clock baby care resonsibilities, and the argument is similar - physiological plus phsychological stresses require greater energy expenditure, which uses up more thyroid hormones, which in severe circumstances leads to changes in thyroid structure, making it less able to produce same quantity of thyroid hormones = hypothyroidism.
Sometimes I think we all go about Hashimotos wrongly. We are all caught up with symptoms and Thyroid hormones. At the end of the day it is an autoimmune disease. There are certainly cases of autoimmune diseases going into remission. There are also claims of complete recovery. However, once you have an autoimmune disease, they are tricky buggers to control! There is talk of resetting your immune system, removing triggers, diet, reducing stress etc.
For me, alas, I think I am too far gone done the autoimmune disease rabbit hole. I had relatives on both sides with serious autoimmune diseases. (One did go into remission and as far as I know never had a problem again). The others just lived with them. I have had Hashi’s for 12 years now. I believe I am on the cusp of developing vitiligo (like my mother).
I also developed hashimotos autoimmune disease after a very, very stressful birth...
....28hr Labour, failed ventouse, emergency c/s, baby not breathing, in SCUBU for a week, brain damaged, cerebral palsy being bounded around, (she was neither thank god) dreadful post partum care, discharged too early without baby, received absolutely no midwife care so left for 3 weeks unable to go to the toilet, my staples in my CS were left, so my scar tried to heal over them. I got an infection, felt fluey, and the worst thing was my insides ‘ fell out’ when I stood up! Yes you read that right. I had a massive ventral hernia from pubic bone to sternum, and all the time I was unable to rest, as I had a 3 year old to look after, a sick baby in hospital to visit, whilst trying to find out what had happened to my after care, getting anyone to look at me!)...
wow I can feel all the emotion building up writing that. No one was listening I was so ill, my baby was ill and I felt like the NHS had abused me and abandoned me. The low point came when I found my self rocking on my bed cuddling my newborn and 3 old after having ‘bound’ myself with bandages, contemplating how to smother the children and take my own life!!
So yes, that stress was the trigger for my Hashimotos disease, that I was probably disposed to anyway. So I will keep an open mind, and wish others well, esp those at the beginning of their Autoimmune thyroid journey. But to late for me!
All I can say Gilbo72 is after reading your story I could cry. My heart goes out to you and the stress you were put under was intolerable. Hugs to you ❤
Its therapeutic to tell my story. My present GP's and endos have no idea of my backstory and really aren't interested! It easier for them to dismiss me as a neurotic hypochondriac. I have no faith in the NHS system. My GP at the time told me not to complain as they would close ranks, it would take years and it would be too stressful as I needed to recover. He was appalled. I ended up having to go private to 2 NHS plastic surgeons who worked together on me. They were appalled too. Their speciality were bomb victim reconstruction! They had to do a complete abdominal reconstruction and said they had never seen anything like it!
Good God it gets worse - I'm so glad it helps you to share your story on this forum but my goodness the NHS has a lot to answer for. I, like you, have little faith in the NHS,
According to Ushakov's theory there's 2 important points for your illness. Firstly - that the severe stress, especially one that went on for a prolonged period of time, wasn't the trigger, but was THE cause of the damage to your thyroid. And secondly - that the autoimmunity component is a missinterpretation of what the immune system was doing. In short, the immune system plays a key role in tissue regeneration:
"The immune system plays an indispensable role in the process of tissue regeneration following damage as well as during homeostasis. Inflammation and immune cell recruitment are signs of early onset injury. At the wound site, immune cells not only help to clear debris but also secrete numerous signalling molecules that induce appropriate cell proliferation and differentiation programmes essential for successful regeneration."
His argument is that when Hakaru Hashimoto made a discovery of immune cell infiltration in thyroid tissue at the very start of the 20th century, he did not state that the damage was CAUSED by immune cell presence, merely that immune cells were there in large numbers, and that this correlated with the symptoms we associate with hypothyroidism. When we began to learn about antibodies, and particularly self-antigen antibodies in the 1950s, there was an explosion of theories about what these were and why we found them in different organs. One of these was the regenerative view - per the above article - that self-antigen antibodies help to clear debri of damaged tissue and begin the chemical reaction of regeneration. The other theory was the one we hear everywhere now - that somehow our immune system is attacking itself.
This reminds me of what is happening around research on the microbiome. We have developed technology, following mapping of the human genome, that now allows us to examine the genetic types of bacteria that live in and on us in large numbers. We are just at the start of really understanding exactly how we interact with our microbiome, and yet there are theories proliferating left right and centre about what impact the microbiome has. Some of these theories will be proven right, some wrong, and some may perpetuate in limbo, taken as fact, despite being just theories.
Self-antibodies may not be CAUSING disease, but are merely correlated with symptoms related to certain disease states. The real cause is just the bio-mechanics of our bodies responses to external stressors, environmental and physiological. To get at the root cause, it would help to look there.
That is a really interesting theory. But is a lot to get your head around. I do know, without doubt, that if I eat gluten, I feel fluey. When I get a head cold, it always works its way to my neck and my thyroid gland always swells, hurts and I have a crazy few weeks of thyroid crazy symptoms, following head colds. I am also getting the start of vitiligo. To me that is an immune system in overdrive. The confusion I get here, is how does the stress cause the physical damage to the thyroid in the first place?
I am a big believer in the body's amazing ability to regenerate, the magic of cells etc. But I also believe to survive it also resets itself so it works on some level.
The way I am understanding what you are saying is that the body needs the autoimmune chaos for a while to sort itself out. A bit like a fever, but a much longer period. And like a fever, you should rest and let it run its course, nurture yourself and slowly recover? Have I completely misunderstood. However, in modern day life, that is near impossible. But I do think it is possible if caught early enough.
I spent four years untreated, in that time my TSH only got as high as 7, normally around 5ish. But was practically bed bound and was diagnosed with ME. There are some people with TSH's in double digits who still function. I was resigned to the fact I had ME, and did a lot of stress relieving, mindfulness, loving myself, nurturing myself, special diets etc. But I saw no improvement in that time. I always felt that my body had somehow reset its normal self. Down regulated. Maybe it did to protect me, to slow me down, to force me to rest, but it didn't help.
My mother got the start of vitiligo at the age of 17. She always insisted it was because she sunburnt herself very badly. She may well be right as she was disposed to it. Doesn't mean everyone who gets burnt badly will develop vitiligo. Maybe the sunburn was the external stressor. She did everything to cover up, not expose her skin to the sun. It got progressively worse through her life. I can't see how that fits in with the theory.
Like I said an interesting theory and I remain open minded. There is a lot we don't know. There is a mainstream theory out there that TSH is king, and another less accepted theory that T3 is king! A theory that gluten is a exasperating culprit. All of these theories do have positive points, it all depends what angle you are looking at them. But, deep down, I still feel I have missed the boat on that one. Its been going on too long and my body has adapted.x
Very, very interesting and thank you again for keeping on and on and explaining things, I can see truth in that point of view as well. Medical Medium is another person who doesn't believe that our own body can attack ourselves, he wrote books about it too. It's an interesting concept. Thank you for your post!
I’m feeling good, thanks! Really pleased you managed to find him. Your name sounds russian I think? I’d describe the whole thyroid situation as an old injury. When I overdo it, I feel pretty lethargic, but those episodes are getting fewer and far between. I’m off the levo and my tests are normal. I haven’t been able to go to Russia this year because of the travel restrictions but maybe in the summer I will try to go back for a repeat ultrasound.
My very best regards to Andrey Valeryevich if you get to go!
Thank you and that's unfortunate, was looking forward to. I'm up to my neck re further 'medical neglect', once it starts, that snowball just seems to keep gathering! Back soon.ish. Best wishes.
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Thyroid secret
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