Relapse or just time of year - includes brain fog?

[mermaid]

I haven't been on the site for a long time, but I think I joined back around 2008 originally. I was diagnosed with ME/CFS about that time. Happily, I have never had it severely, but it has hugely impacted the quality of my life since that time.

I have spent time trying to improve symptoms (some success), and noted that I improve in the summer, to the extent that the last 2 years in mid summer, I have at times improved to the point that I feel I no longer have ME/CFS. However winter comes along, and I slowly deteriorate. Also I am ageing (now 72) so now there are some physical issues irrespective of the ME/CFS symptoms. I am out in the open air more in summer and I feel that is better for my symptoms, so this may be key.

I never used to have much of what people call 'brain fog' but this crops up more now. I think it's worse when I overdo things generally, but while the physical symptoms post exertion may not be too bad, at present the brain fog is bad to the point that I sometimes wonder if this is what dementia is like. I feel embarrassed by living in a fog so bad, that I cannot think clearly.

I am exploring methods of improving things, given that there appears to be no magic cure. I have long term hypothyroidism (before the ME/CFS diagnosis) and moved to using T3/Liothyronine monotherapy some 13 years ago. I felt that improved things generally, but not at the moment as it's still winter. I am in touch with a person who has written books on T3 use who developed a system to enhance the cortisol release via the circadian rhythm, by using the T3 dose. I only just started trying this, a few days ago. He reckons that my blood cortisol level is low in range in that it's not optimal, so I guess this system might improve things as it has helped some people.

The other thing I wondered is regarding my neck pain that has developed over the past 6 months. I suspect that it's age related with some arthritis, and am now using an orthopaedic pillow which has improved the pain, though the neck is still stiff (am trying some exercise to help too). Could this be impeding blood supply I am wondering? I am sure I have read that blood supply to the brain is lower anyway in ME/CFS? I just feel really tired at present despite decent amount of sleep, and the brain fog with it.

Any thoughts please?

 

[Wishful]

Lots of changes with the seasons: daylight hours, temperature, humidity, spores, etc. If it's a gradual shift in severity, it would be difficult to figure out which factor is responsible. My ME doesn't seem to change significantly with the seasons.

When someone says they had a benefit from T3 or T4, but not enough to be happy with, I suggest trying T2 (3-5 diiodothyronine). It worked really well for me, and oddly enough, I needed one dose every 21 days, and if I forgot that dose, my symptoms would flare up 21 days after the last dose. Daily dosing made it stop working. For me, supplemental iodine worked just as well, since some of that gets converted into T2. I no longer need that supplementation.

I think it's only a small chance that T2 would work for you the same way, but it's more of an example of how thyroid treatments aren't necessarily as simple as "take a tablet once a day".

 

[linusbert]

Could this be impeding blood supply I am wondering?

yes, that can lead also for "healthy" people to all kind of weird symptoms like migraines etc. , stuffed ears like feeling etc.

i wonder if some acetylcarnitine or allithiamine might help you, its for making better use of energy metabolism also in brain.

 

[mermaid]

Lots of changes with the seasons: daylight hours, temperature, humidity, spores, etc. If it's a gradual shift in severity, it would be difficult to figure out which factor is responsible. My ME doesn't seem to change significantly with the seasons.

When someone says they had a benefit from T3 or T4, but not enough to be happy with, I suggest trying T2 (3-5 diiodothyronine). It worked really well for me, and oddly enough, I needed one dose every 21 days, and if I forgot that dose, my symptoms would flare up 21 days after the last dose. Daily dosing made it stop working. For me, supplemental iodine worked just as well, since some of that gets converted into T2. I no longer need that supplementation.

I think it's only a small chance that T2 would work for you the same way, but it's more of an example of how thyroid treatments aren't necessarily as simple as "take a tablet once a day".

Thank you @Wishful for your reply.
I know there was someone on this site who definitely had a seasonal improvement in the summer, and then went downhill in the winter. It has become more clear cut for me since I moved to a different part of the country nearly 3 years ago. I am in the UK, and I lived in the far West by the sea where it was a damp climate, so although I fear with global warming the heat of living inland on the outskirts of London definitely has its downside at times, my body prefers the dry heat I think. I wonder too if it's a vicious circle as I am outside more in summer and my body likes the outdoors and movement which I have to restrict more in winter. This winter has been colder than most too, and I found it hard to go out at all at times.

I thought your use of T2 is interesting, as to only need one dose every 21 days seems unusual. I had read about it being used on here before I think, but knew nothing about it, and it isn't really talked about in the UK. In fact, having googled it now, I know that it's not easily available here, just over the counter (ie it's banned effectively). I gather that bodybuilders use it to burn fat, as they also do T3.

I found this interesting bit of research done on T2 https://pmc.ncbi.nlm.nih.gov/articles/PMC4272398/
It mentions near the beginning of the research article (I didn't manage to read all of it, but I read the beginning and the end), that research has confirmed its effect on confirmed T2's effects 'on mitochondrial function, fat mass, lipid metabolism, and its positive influence on insulin resistance (6), further supporting the case for T2 use to enhance metabolism.' Certainly I have seen other research done on T3, and that also highlighted the positive issues re lipid metabolism, and and on insulin resistance, and it also stimulates mitochondrial function too.

I can even attest to the fact regarding some of this, as though I haven't lost weight, but gained it in recent years while on T3 monotherapy (I did lose weight initially), I have remarkably good blood scores on cholesterol, and show no signs of pre diabetes, unlike my brother who is able to be more active than I am, has tried to adjust his diet, but who is now diabetic. I probably eat too many carbs to lose weight, as last summer, despite doing up to 10 hrs a week on my allotment, I didn't lose any weight at all. It is unusual in the UK to be on T3 monotherapy, unless you fund it privately, but I managed to get on to it about 13 yrs ago via a friendly Endo, and they have allowed me to stay on it, so I get it for free on the NHS.

As I have said, it's difficult to get hold of it in the UK anyway, but I would be very nervous to introduce anything else like that into my regime, given that I have to be very careful with my thyroid intake, as I am not under the care of an Endo, and the GP locally has allowed me to continue with the T3 since I moved. I used the books written by Paul Robinson in the UK when I moved onto T3, as there is almost nothing in the mainstream to support me knowing what to do.

I did not know that supplemental Iodine could convert into T2. I have always been nervous of using that too, as there seem to be opposing views on it, though I know some people swear by it.

 

[mermaid]

yes, that can lead also for "healthy" people to all kind of weird symptoms like migraines etc. , stuffed ears like feeling etc.

i wonder if some acetylcarnitine or allithiamine might help you, its for making better use of energy metabolism also in brain.

Thank you for replying @linusbert
Interestingly I do take Acetylcarnitine. About 15 years ago I had some tests done by Dr Sarah Myhill (I am in UK and she practises here), and one of the tests was on Carnitine, and it seems that I had the lowest score she ever recorded for it! I wasn't severely ill luckily, and was able to get myself on to a package of basic supplements, some of which I still take. One of the ones I tried was this one for Carnitine, but my gut was not in a good way then, and I couldn't tolerate it. About 5 years later I got retested, and despite not having taken it, my score had still improved quite a bit, but was still below range.

I cannot get that tested here now on Carnitine, as that lab closed down, so about 5 years ago I saw that I could buy Acetylcarnitine in capsule form and decided to try it again, and I can now take it easily. I am taking 2 a day, which is 1600 mg.

I just checked out Allthiamine, which I see contains thiamine. I do take a good quality B complex which I see does contain quite a whack of thiamine.

Today I went to see an osteopath for advice about my neck pain. It seems that most of my neck is pretty good, It's only the top 2 that have an issue, and it doesn't sound too bad - no bony spurs for example which would be more worrying. He did some very gentle cranial osteopathy on me, which was very relaxing, so will see how that goes. I forgot to ask him about blood supply to the brain etc, but am seeing him again next week, so will see what he thinks on it, if anything.

My brain fog has thank goodness gone for the last 2 days. I think I need some better pacing of energy right now, as I think that will reduce the symptoms. It's easy to say, but hard to do in my case!

 

[Azayliah]

I go downhill every winter. Potential factors for me:

• air pollution gets worse here during winter; I have chemical sensitivities and likely an allergy to nickel
• asthma is worse in winter/worsened by cold air
• flu season, added mold (allergic)
• less likely to open windows (increases/concentrates indoor air pollution)
• the cold makes my limbs feel heavy and my muscles weak and less responsive, causing moving around to be more exhausting
• dietary changes
• more atmospheric pressure shifts--this causes changes to certain things in the body, such as blood sugar... don't recall what else, but it's enough of a problem that stormy weather triggers migraines

I'm pretty sure blood flow is also affected, and I suspect it to be a contributor for many of my symptoms. Getting sick and breathing more rapidly or holding one's breath are known to affect it. I can't quite recall, but I think getting cold in itself also affects blood flow, which may tie into my muscle issues and migraines.

 

[Wishful]

A quick check shows quite a few hits for T2. It had been hard to find at one time, but maybe someone figured out there was enough of a market for it and built a production line. There's certainly no guarantee that it will help, but I think there's at least a small chance it will help some PWME, or other people with medical problems that aren't treated successfully by T4 or T3. I initially had temporary remission from iodine, and when trying to figure out why iodine helped but T4 and T3 didn't, I discovered that there was T2 as well. It wasn't expensive, so I thought it was worth the gamble, and it proved helpful. The T2 gave temporary remission the first couple of doses too, but after that it only reduced my general ME symptoms. I still think the effect lasting a very consistent 21 days then abruptly ending is an important clue to how it worked, but that's probably PhD level understanding of biology.

I never had any bad reaction to supplemental iodine. Most people get daily iodine supplementation through iodized salt. I think it took ~100 mcg of iodine to trigger full (temporary) remission, which is less than the RDA, so I'm not suggesting megadosing. I should have tried to figure out how much nori or shrimp I would have needed as an effective dose.

 

[mermaid]

I go downhill every winter. Potential factors for me:

• air pollution gets worse here during winter; I have chemical sensitivities and likely an allergy to nickel
• asthma is worse in winter/worsened by cold air
• flu season, added mold (allergic)
• less likely to open windows (increases/concentrates indoor air pollution)
• the cold makes my limbs feel heavy and my muscles weak and less responsive, causing moving around to be more exhausting
• dietary changes
• more atmospheric pressure shifts--this causes changes to certain things in the body, such as blood sugar... don't recall what else, but it's enough of a problem that stormy weather triggers migraines

I'm pretty sure blood flow is also affected, and I suspect it to be a contributor for many of my symptoms. Getting sick and breathing more rapidly or holding one's breath are known to affect it. I can't quite recall, but I think getting cold in itself also affects blood flow, which may tie into my muscle issues and migraines.

@Azayliah thank you - some good points there on your list.
I am not sure if air pollution is worse in winter here than summer. I hadn't ever thought about it, but according to Google, it is considered worse in winter. I only have electric in my flat, but everyone is affected by the air outside. I don't have the windows open so much, but do use a trickle vent. I also have an air purifier here, which I hope helps a bit.

I have managed to avoid flu thankfully, though had a virus mid Dec which went on a bit, but wasn't serious. Nothing else. I worry as I use buses, but this year I have liberally used surgical masks on the bus, and an antiviral spray before I set out. My immune system has been the best for years, but I still got low physically. I don't have asthma luckily.

I agree with what you say about the cold affecting how you move around. It's been colder than usual here this winter, and all I want to do is stay under the covers. At last we have sunshine here though, but with colder nights.

Interesting re the atmospheric pressure changes too. I know what you mean about migraines and storms, though for me that would tend to be in the summer more here.

Dietary changes - yes! I definitely eat more carbs and tempted by sugar more in the colder months.

Happily, I just spent a couple of hours in full sunshine at my allotment. I woke feeling tired and hung over as usual and by the time I got home from being out in the sun, and pottering, I felt brilliant. The best for a while, though I restricted myself to 2 hours as I overdid it last time and suffered after. It remains to be seen how much PEM I have tomorrow or day after. As summer progresses, I usually have less PEM. I don't want to be suggesting that exercise is for everyone with our issues, as I know it's not so, but I guess for me with gardening is that it works if the right weather comes with it.

 

[mermaid]

A quick check shows quite a few hits for T2. It had been hard to find at one time, but maybe someone figured out there was enough of a market for it and built a production line. There's certainly no guarantee that it will help, but I think there's at least a small chance it will help some PWME, or other people with medical problems that aren't treated successfully by T4 or T3. I initially had temporary remission from iodine, and when trying to figure out why iodine helped but T4 and T3 didn't, I discovered that there was T2 as well. It wasn't expensive, so I thought it was worth the gamble, and it proved helpful. The T2 gave temporary remission the first couple of doses too, but after that it only reduced my general ME symptoms. I still think the effect lasting a very consistent 21 days then abruptly ending is an important clue to how it worked, but that's probably PhD level understanding of biology.

I never had any bad reaction to supplemental iodine. Most people get daily iodine supplementation through iodized salt. I think it took ~100 mcg of iodine to trigger full (temporary) remission, which is less than the RDA, so I'm not suggesting megadosing. I should have tried to figure out how much nori or shrimp I would have needed as an effective dose.

Hi again @Wishful. Anything to do with the thyroid is prescription only in the UK, so I think that online pharmacies would be in trouble if they sold it without doing checks, as they have to do with T3 and T4. As it's less well known even than T3 or NDT, then it can't be picked up in the UK so easily.

Actually I can see if for sale on Amazon.com but they won't ship it to the UK.
Also I just found a mention of T2 on a well known UK thyroid forum and they point out that it can be bought over the counter in the US but not in the UK.
Someone on the forum has provided a link to a study done in 2015 on T2 but unfortunately they have put the link on incorrectly. They then provide a quote from the study's conclusion which I will put below...

in addition to increased metabolism and reduced fat mass, T2 administration also leads to suppression of the HPT axis, increased food intake, and cardiac hypertrophy. A particular point of concern is the observation that the lower dose of T2 used by the authors exerts negligible effects on adiposity and metabolic outcomes, yet results in a marked suppression of the HPT axis leading to reduced levels of circulating T4 and T3 (and presumably TSH), with unknown long-term consequences. The implication of this finding is that, for a given dose, the detrimental effects of T2 on the HPT axis may preferentially occur before the intended metabolic ones. Thus, for the time being, these new data should compel users of T2-containing supplements to assess their thyroid status, err on the side of caution, and limit their daily dose, as appropriate.

I will look into the idea of using iodine again. Many people warn against it if you have Hashimoto's (autoimmune) as it can cause a flare up of symptoms in the thyroid, although I read an article once that reckoned it would be safe as long as you were taking Selenium (which I do), although I can'r remember why! I do eat a fair amount of sea fish in a week - often twice a week. Iodine is in iodised salt as you have said (will need to check my salt on that!), and apparently it's also in bread, milk and eggs.

 

[Azayliah]

[...] I also have an air purifier here, which I hope helps a bit.
[...] all I want to do is stay under the covers. At last we have sunshine here though, but with colder nights.
[...] Happily, I just spent a couple of hours in full sunshine at my allotment. I woke feeling tired and hung over as usual and by the time I got home from being out in the sun, and pottering, I felt brilliant. The best for a while, though I restricted myself to 2 hours as I overdid it last time and suffered after. It remains to be seen how much PEM I have tomorrow or day after. As summer progresses, I usually have less PEM. I don't want to be suggesting that exercise is for everyone with our issues, as I know it's not so, but I guess for me with gardening is that it works if the right weather comes with it.

My purifier is necessary. The air quality index around here occasionally rises to 200+, and I notice breathing, coughing, and headache starting at half that much. It's worse when the purifier isn't functioning... so IMO purifiers offer some help with air pollution.

A heating blanket for me helps me with pain and morning stiffness. Also learned not to stretch on waking up, since that risks some pretty strong muscle cramps. Outside the blankets I've been wearing thermals under my normal clothes, which seems to be helping to keep the chill from affecting me quite so badly.

Despite the pollution, allergens, and viruses floating around outdoors, scientists think there is stuff to breathe in that works in symbiosis with our biology, so that could be helping. Just looking at nature is also good for the brain, and sunlight triggers the body to produce vitamin D. I generally felt better when I went out (and didn't do things that got my heart rate up), but I can't tell how much of that difference is related to being a shut-in versus aging/illness-progression.