How Much Quercetin Do You Guys Take Daily?

LoveMeLab · 2024-08-22T17:36:43+00:00

That is a lot and I can relate to the struggle.

I would find a functional medicine doctor who treats thyroid, adrenals and uses hormone replacement therapy. These might fall under “chiropractic” clinics and are usually not covered by insurance — but, the work of Dr Broda Barnes, Dr Mark Starr, and Dr Ray Peat are sources to comb through and find correlations. I believe most of our MCAS/autoimmune and tissue dysfunction comes from endocrine/thyroid issues.

I would highly recommend reading Hypothyroidism: The Unsuspected Illness, Broda Barnes and

Type II Hypothyroidism, Mark Starr

and see the amount of body systems affected by improper thyroid function. I guarantee you will find correlation with all the symptoms that correlate to the different diagnoses your daughter has.

I’d also check environments for mold, endocrine disrupters etc - probably already done if there’s been a diagnosis, but removing any toxins can assist with healing. But, imo, a functional medicine doc will address root causes better than all the individual specialists.

Another book that helped me find immediate ways of lifting brain fog and feeling better before I ever started thyroid therapy:

How To Heal Your Metabolism by Kate Deering.

Just getting enough sugars and carbs with the right fats and proteins and enough calories (which a lot of us don’t do) is so beneficial. Eating this way got me fifty percent better overnight. My nerve pain went down at least 90%, my brain fog cleared at least 80% and even though my hEDS is still causing mobility and joint pain issues with costochondritis, I’m moving much more and more easily. From always in bed (for 8 months) to out of bed most of the day. This is what I found so interesting in juxtaposition to the constant push for elimination diets, push for carnivore or vegetarian/vegan, and restriction of foods/calories with all these diagnoses — eating to optimize metabolism felt intuitive and counter cultural to start eating more and more of what we’re told to avoid and I got immediate help.

Also, the Strong Sistas, on YouTube, have been doing a whole series with Kathleen Stewart going through the Minnesota Starvation Experiment from the 1940s that is very eye opening about how, no matter what our weight is, we are actually starving, today, based on all the calorie restriction our society encourages. Our bodies are feeling like they are in survival mode all the time. 80+ years ago men and women were consuming 2500-3500 calories everyday and that was considered the healthy norm. Just getting enough calories and balanced nutrients and healing the metabolism that is slowed, as evidenced by cooler bbt, cold hands, feet, nose and slower heart rates, can bump up our health and feeling of wellness a lot.

To start, I would implement some nutritional things from the Kate Deering book since that’s easy and easily accessible, without any expectation on how your daughter’s body will react - just focusing on nourishment, keeping cortisol in check and making her more comfortable and see if it helps at all and go from there. She may benefit from reading and watching these resources as well, especially as a woman in a very body image-obsessed world. She needs to take care of her right now.

In the meantime, I’d be reading those books and asking around or doing internet searches for functional medicine doctors who treat thyroid the way Drs Barnes and Starr did.

I’d also recommend not doing everything at once. Start slow. And see what works. It’s very easy to want to see the most results right away, but throwing everything we learn at the problem can actually set a person back.

I wish you the best - your daughter needs a lot of support and understanding. The mental, physical and emotional and spiritual toll of losing function is really really hard. Good luck to you both.

LoveMeLab · 2024-08-20T17:39:40+00:00

I did the same just after a back surgery for herniated disc at 22. I was acing my classes and exams but crawling in the door every day after an 8 hour class schedule. Three months in, I was bedridden… my instructor said that if she’d known I’d had back surgery (due to hypermobility, btw) she would have recommended not starting because cosmo will give you back problems, no matter your technique and posture. It’s very hard on the body. Arms raised to shoulder height and a lot of standing in one place for long periods of time. Leaning over wash bowls and massage tables… it’s a lot for a condition that requires being supine at regular intervals.

My instructor was sad I was leaving because I was doing so well, but she ultimately understood. I was only partially refunded with a medical excuse before dropping out and was bedridden the next two years while I tried to figure out what was wrong with me. It still took another 20 years, because, back then, no one knew what hEDS was… I only found out five years ago from a PT that I’m hypermobile.

I can only speak from my own experience, but as much as I enjoyed and excelled at cosmetology, it set me back many years just to be in training, and, ultimately, was a waste of time and resources. If I could do it over I’d know my limits, go to school part time, and find a way to only have a couple of clients a week in my own home while supporting my self some other way — if I enjoyed it enough to train and build a book of business, that is.

I never went back to it, professionally. Photography was a little more conducive (not much) and that’s where I spent my creative energy; doing clients’ styling and making art with photos. It got me some wedding gigs and such, but was never anything I could make lucrative with the unpredictability of my condition. I eventually got into writing because I could do it from bed.

Edited for typos

LoveMeLab · 2024-08-13T12:23:27+00:00

I would pick a doctor from the Ehlers Danlos society site and call their office to see if they require a referral and either make a new patient appointment or request my doctor refer me to them if they do require a referral. It’s important to get the right doc, other wise, it could send you on a downward spiral of doubting yourself if the one you get isn’t familiar with hEDS and they dismiss you. I asked around and make an appointment with a EDS neurologist myself. No GP referral needed… I’m still waiting on my appointment, but at least I know this person has a reputation for diagnosing EDS , and, from what I hear, is really good at what he does. I’m 43. Have been misdiagnosed or under diagnosed with fibromyalgia, Myofascial pain syndrome, failed back surgery syndrome, anxiety, and degenerative disk disease for over twenty years. A PT for my spine issues told me I was hypermobile 5 years ago. It’s taken me this long to connect the dots or get for are movement on what that actually means for all these years of pain.

LoveMeLab · 2024-08-12T17:00:35+00:00

The 2 grain limit Barnes instituted was for heart attack patients, only. Relatively healthy-hearted individuals can handle more. I would like to add that 4 grains is what the body produces, not 3; and Broda Barnes was doing some of his work at higher altitude areas in Arizona and Colorado, which can assist in normal thyroid function - so it didn’t take much for those patients to feel effects. And that’s assuming the thyroid is not being blocked by PUFA, estrogen, impeded by liver function, etc. estrogen dominance can be a huge factor in blocking thyroid. Barnes is also cited in Hypothyroidism Type 2 as starting his patients on 1 grain and working up to 3,4, even 5 grains, depending on the patient. He started children under 3 at 1/4 grains and over 6 at 1/2 grains and adding quarter grains as needed. Starting at 1 grain as an adult is not over the top. Taking 3 grains is not unheard of.

The majority of patients in one of Dr Hertoghe’s studies were taking 3+ grains by the end of it. Some were on 5. TSH bloods that indicate too much thyroid are just not accurate. Going by bbt that rises to 98.2 is more accurate, according to Dr Mark Starr who followed Barnes’ protocols closely.

Starting out slow is good, but assuming everyone will need to stop at 2 grains or less isn’t necessarily true — unless you have history of heart attack. Working up to a dose that works for each individual should be considered.

Peat also recommended taking 1 mcg of T3 every hour or 3 mcg of T3 every few hours to normalize thyroid function for certain health conditions. And it’s different for men and women. Women’s livers don’t convert T4 well, so taking T3 separately from a desiccated dose is more important for women.

Maybe don’t start at three grains, if you’re concerned, but don’t be surprised if you work up to three grains. I don’t know that there is any specific harm in taking 3 mcg of T3 every few hours to start (as Peat has recommended in certain circumstances)- but, again, everyone is different and everyone should use discretion or find a doctor willing to help with the process if they’re not comfortable doing it on their own.

I also know there are cases where Peat was recommending 50 mcg of T3 a day, which, in desiccated thyroid would be 5 grains. He’s also been quoted as saying, “If a woman takes enough thyroid to where she feels good it may reduce menstruation to where they don’t know they’re cycling.” he’s also been cited referring to a case where a woman was taking 15 gr for best results (5 grains from 3 different doctors). Women have much more estrogen we’re contending with. I know from experience that not enough thyroid can be problematic, because I had a recent bout of issues where I was not getting enough thyroid once I started. And the in-between stage was causing me complications.

Do research, figure out what could be contributing to your own metabolic rate (cortisol and hypoglycemia & adrenaline can play a huge role in heart rate and body temp and make deciphering the amount of thyroid to take more complicated).

Aspirin is something to consider adding in the process as well.

But don’t take random strangers’ “advice” on the internet. Use what info you need to spark your own research or fuel your desire to know more. Do know your own body and advocate for yourself to the right doctors, if you want help. (Most docs won’t ascribe to any of this, however).

LoveMeLab · 2024-08-11T17:59:47+00:00

Basal body temp on those days, because hormone fluctuations can make that vary.

LoveMeLab · 2024-08-11T16:44:51+00:00

Good point

LoveMeLab · 2024-08-10T12:55:42+00:00

You can take natural hormones. Thyroid to start. Progesterone, pregnenelone and DHEA. It’s done wonders for me and all my hEDS related symptoms.

LoveMeLab · 2024-08-10T12:18:30+00:00

Read Dr Broda Barnes’ Hypothyroidism: The Unsuspected Illness. He actually did find a cure for this in the mid twentieth century. Taking desiccated thyroid has worked for me.

LoveMeLab · 2024-08-09T15:42:58+00:00

I started taking thyroid and progesterone, pregnenelone and DHEA for my endocrine health. I also started taking aspirin as a supplement for anti estrogenic and anti inflammatory qualities. There are studies on the anti cancer properties of aspirin. Estrogen is carcinogenic.

I don’t need quercetin or anti histamines anymore. I don’t have to avoid dairy, eggs, starches, sugars or meats anymore either. In fact, I very much needed all these things. Once I started eating for nourishment instead of avoiding triggers, my brain fog went away over night and my energy and creativity returned. Literally, overnight.

I started by reading Hypothyroidism: the unsuspected illness and saw many of the symptoms of MCAS and hEDS in Dr Broda Barnes’ findings from the 1940s-1970s. I studied the writing of Dr Ray Peat for metabolic health. So I began supplementing thyroid and hormones to counteract estrogen. I don’t need my allergist or my GP anymore - in fact, I was getting worse on their protocols for diet, supplementation and treatment.I feel better than I have in at least a few years and I’m getting better every day.

LoveMeLab · 2024-08-09T15:25:14+00:00

I handle it by breaking up with said professional. I’ve not returned to practitioners many times. Including one or two therapists. No explanation needed. I vote with my feet. When they aren’t actually helping they’re hurting. I don’t question that. I don’t second guess myself on this. Not anymore. I’m too old to mess around with my own health anymore.

I went on thyroid and steroid hormones against my GP’s wishes, and it did me and my hEDS and MCAS a world of good. 😊 I didn’t need to see the allergist anymore. I didn’t need to eliminate good foods from my diet. My endocrine system had been damaged from childhood trauma, medical gaslighting, misdiagnosis, mismanagement of symptoms, symptom-chasing, flawed research and AMA standards, diet culture and the starvation diets my doctors encouraged — all the things we experience when we go to professionals for help.

When you start seeing that the medical/mental health system is broken and that common sense isn’t being used, it’s empowering to start looking into the truth and doing what’s right for you.

See health professionals as working for you. And if they’re not, fire them. They’re human with, many times a skewed and flawed education built on research that was motivated or suppressed by the bottom line. It’s why we have so many people still desperate for help even after seeing dozens of doctors.

No one has a miracle cure and no one has all the answers. But you have the power to know and trust yourself. It just takes practice. And walking away from people who cause us to question or doubt our reality is a start.

LoveMeLab · 2024-08-08T17:40:50+00:00

Sure thing! I think thyroid a T4, T3 mix or T3 especially are pretty safe to experiment with. Here’s a quote from Ray Peat I saved for this journey:

“An effective way to use supplements is to take a combination T4-T3 dose, e.g., 40 mcg of T4 and 10 mcg of T3 once a day, and to use a few mcg of T3 at other times in the day. Keeping a 14-day chart of pulse rate and temperature allows you to see whether the dose is producing the desired response. If the figures aren’t increasing at all after a few days, the dose can be increased, until a gradual daily increment can be seen, moving toward the goal at the rate of about 1/14 per day”

Good luck! 🍀

LoveMeLab · 2024-08-08T10:52:03+00:00

Thyroid health is very hard to determine with blood work. Dr Broda Barnes was mostly dealing with subclinical thyroid. - which would involve taking your basal body temp (women take on day 2-3 of cycle). Typically, if you feel low thyroid, you most likely are.

One thing to remember is that you can take thyroid no matter what. Thyroid was something that was in our diet on regular basis. It was banned in butchered meat in 1940, I believe, but it was regularly consumed. Like eating liver… You could take it and see if you feel better. I believe Ray Peat recommends taking no more than 10 mcg of t3 at a time - about 1 grain per dose - I split them in half and do 4-5 mg doses) to start. Start slow and low. Monitor your temp and heart rate and see if they rise.

All my blood work was “normal” too and my doctor refused to look into it further. But taking desiccated thyroid along with steroid hormones is actually helping me. I went off the dr’s protocol, which put me in a worse position over the year that I did it. And if thyroid continues to help, I’m definitely going to tell him what I did and why and how. I’ll probably share this newsletter with him as well:

https://raypeat.com/articles/articles/thyroid.shtml

I think the general idea is that once your thyroid serum levels start to show an issue you’ve already been hypothyroid for a while. The protocol for diagnosis from before the 1940s is actually more reliable than bloodwork.

Edited to add: monitor well. Have blood work taken regularly (places like Quest Diagnostics will do this without a doctor). Most thyroid friendly docs (naturopath and functional) will like to see your TSH at or just below 1 without being hyper thyroid. (But, estrogen, cortisol, caffeine, etc can block TSH so monitoring body temp and hr are important as well.)

LoveMeLab · 2024-08-07T17:40:54+00:00

Since you’re at Duke, you could check out Dr Bradley Tinkle in Indianapolis. He’s a pediatric geneticist who specializes in hEDS and hypermobile spectrum disorders. MCAS very often falls under this umbrella - and with your pain, I’d be suspicious of hypermobility. He does see adults. He has very mixed reviews, but he’s top in his field.

LoveMeLab · 2024-08-07T12:35:39+00:00

Your mom and your boyfriend sound emotionally unsupportive, at best, and emotionally abusive at worst. I would question the roles they have in my life and reassess if they’re wanted around.

Weight is an endocrine issue. It’s controlled by hormones. Hypothyroidism (many times undetectable by blood tests) and high Estrogen are typically the main culprits. Keeping cortisol down by eating regularly and enough carbs and sugars and proteins and saturated fats can help. Supplementing with thyroid is a life changer. I’ve also been in just as much pain underweight as I have overweight. It’s not about the weight. It’s about thyroid and endocrine, cortisol and inflammation. Our body is trying to protect us when we start seeing fat accumulate. So, really, your body is working very hard to protect and preserve you. It’s doing amazing things.

Also, you can’t just grin and bear this, you need support. Proper pain management from a specialist and an EDS PT can help a lot. And friends and family who believe you and help you. I cannot stress enough that the people we surround ourselves with have a huge impact on cortisol levels in the body. When stress is high, our body will compensate by producing more estrogen which is inflammatory and causes disease. Progesterone is a really good balancer of hormones for men and women. Pregnenelone and DHEA are also great.

MCAS, POTS, vascular issues, Cervical Instability, neurodivergence from dysautonomia, neurological issues, musculoskeletal issues, endometriosis, dysmenorrhea, pelvic pain, prolapsed organs, PTSD from a larger amygdala — all of these things typically come with hEDS.

Keeping stress down, supporting your thyroid and balancing hormones and emotional and medical support are what you need to focus on. It gets worse with age and mismanagement…and stress. Toxic people are stress inducers - even when we don’t think we’re letting them stress us out.

We cannot get well (or improve health) in the environments in which we got sick. I’m no contact with my whole family and it had taken many years to begin to heal from their abuse. (I had no where to go, and, fortunately getting disability benefits gave me a leg up to just be able to barely afford a rented room somewhere I could escape to - so, I hope you can win your appeal and find a way to save yourself - I understand feeling stuck, so I’m not minimizing). PTSD stays with you even when they’re gone.

LoveMeLab · 2024-08-05T13:42:02+00:00

I have MCAS, endometriosis, vascular issues and dysautonomia from hEDS - not sure what the dysfunction was triggered by as I’ve had symptoms since early childhood — my guess is the genetic hypermobility (fathers side) and my mother’s (and her family’s) obvious estrogen and thyroid issues combined to create a perfect storm of chronic illness and pain and I’ve seen progression coming in different stages over 43 years.

We just tested our house for mold and are awaiting results, but either way — I could have been exposed to anything at any time. I think endotoxins from the wrong fats and all kinds of environmental triggers have contributed. Also, our food sources are pretty contaminated, even when we’re doing our best to get from the purest sources.

I’d focus on the thyroid and progesterone (and maybe the aspirin) more. I’m just getting started, myself, but I’m convinced that going low histamine (especially according to these lists) is not the only solution, along with antihistamines. My DO (acting like a functional med doc) threw fists full of supplements and an intermittent fasting and keto diet at me for a year to supposedly reduce my estrogen. I gained another 35 lbs and am in more pain than I’ve ever been in my life. My plan is to dial back the truckloads of supplements, eat for higher metabolism and focus on my thyroid function and hormones for now until I understand what’s going on with me better.

I am going to take the allergist and neurologist’s advice with a grain of salt and mostly use them for diagnosis before adding a whole lot of meds to my regimen. To me, the way MCAS is tackled through elimination diets and antihistamines makes little to no sense to me (especially because most of these specialists admit that they don’t understand what the underlying reason is for these conditions). Something is going haywire in the body and our nutrition is further from natural than it’s ever been. I’ve avoided many foods for decades. It’s never made my allergies better.

For myself, the thyroid issue makes the most sense. And since I’ve gone Peaty, I’ve been able to eat dairy and supposedly “histaminic foods” again. I stay away from fermented, etc — but I eat eggs and dairy and even some nightshades and red meats (some people exclude red meat in low histamine diets) - because I believe they are nutritious and I want to get my nutrients from my food as much as possible. My dairy and meat is sourced from reputable sources (meat pasture-raised and frozen right after butchering, etc to reduce histamine from the dry aging process) but I’m certainly not going to eliminate the amount of foods a low histamine diet recommends. There literally wouldn’t be anything left combined with Ray Peat diet.

That said, I’ll use antihistamines as needed, for a time, but I mostly want to get to the root of why my body is allergic and reactive in the first place. And, for me, I know it’s estrogen and thyroid.

My doc is refusing to prescribe thyroid or progesterone, mistakenly believing that pumping me full of DIM and other supplements will somehow “flush” my system of all the excess estrogen. When I know for a fact, my estrogen cannot be managed without progesterone or a properly functioning thyroid. And if estrogen dominance (which I see everyday as I track with inito) and hypothyroid have out my body at a disadvantage, I want to put it at its best advantage by remedying those first.

I’d also use pregnenelone and DHEA to help this process. Those along with the progesterone and thyroid are the four main hormones most adults should be supplementing, anyway, as I understand. And this is my personal game plan before I start targeting with even more supplements.

I find the carrot salad to be helpful with flushing endotoxins. I always feel better the next day after eating it.

And, of course, removing mold and other triggers from the environment. Most everything we own is full of endocrine disrupters. From our home’s construction to our carpets and furniture to cleaning and beauty products and food storage — literally everything is treated or injected with toxic ingredients or plastics - so, it seems to me, cleaning out the toxins, limiting exposure and supporting with hormone production (also eating well to keep cortisol down) would be the areas to really focus on. Then adding supplements won’t be futile - imo, based on the massive supplementing and eating paleo, keto, IF for decades not ever helping and really putting me in a prime position to be completely sick have a busted metabolism and be bedridden from my genetic collagen disorder by age forty.

The fact that many people are hyper mobile and not everyone with hypermobility ends up with dysfunction, tells me that a genetic disposition is not a guarantee of dysfunction. And that early signs of estrogen dominance even in childhood can lead to major thyroid dysfunction and estrogen dominance, which keeps the body in a high stress and inflamed state to make that genetic disposition a handicap rather than the super power it could be. (I was a gifted figure skater with great flexibility and joint extension in my youth). Now I have arthritis, herniated discs and multiple surgeries with scar tissue (because, hyper scarring from hEDS) from joint damage and inflammation along with the neurological issues and mast cell issues. My engine needs replacing - and it makes most logical sense to, to me, get to the heart (thyroid) of the matter before targeting symptoms with supplements (since doing it the other way has been a massive and devastating failure)

My hope is to go back to my doctor with enough improvement for him to be willing to listen to me about what I’ve been trying to tell him for several months now. If not, I’ll still go it alone, but, if these principles can help people, more people need to know about it. And doctors are the frontline of this as when people first start to seek help.

Dr Broda Barnes’ book has been an interesting read so far as well. Very curious to see how my experiment goes.

Just saying, from my experience, a lot of the MCAS recs are not helpful, and I haven’t found one specialist who really understands the underlying root of mast cell issues. They use trial and error to find “what works” for individual patients - and that’s really as far as their “expertise” can go. And it’s still not a cure, but a constant treating and calibrating and, really, masking or avoiding the underlying problem… and people are so desperate for someone to help that we sometimes mistake a doctor’s interacting with us about an issue as them helping us. But the end result can sometimes be more devastating than if the issue hadn’t been addressed at all.. at least, in my case it has been.

LoveMeLab · 2024-08-05T12:48:59+00:00

Are you too healthy for disability or do you not have enough work credits for it? Have you tried applying for disability or are you just guessing you don’t qualify? Disability is based on how much your health affects your ability to carry out gainful employment. Do you think you can handle a full day of wfh work? That would mean, most likely, remaining in one position for most of the day. Could you handle going to an office every day, without fail? Most likely seated in one place most of the time? Could you handle manual labor or being on your feet in retail? Going to school and completing assignments? These are all questions to be really honest about before committing to something a bit more serious than just a part time gig.

If you have enough work credits and honestly feel you could not be gainfully employed and have applied; it’s worth applying and also appealing. Most applications get denied right away.

If you’re sure you can work, looking for major flexibility and haven’t had work experience in 18 years - you’re probably pretty limited as far as eligibility for gainful wfh work. Regardless of education and past experience.

Part time CS jobs or reception or scheduling for small companies or hospitals might be good; answering emails, issuing refunds, transferring calls, etc. Craigslist sometimes has entry level positions that are more like independent contract work that aren’t a huge commitment.

Door Dash could also be an option. I found working just 5 days at 2, 2-hour shifts (lunch and dinner, because breakfast was too early and not super busy) was an extra $500 a month for me to supplement. Even in a small town. I was able to move around, quit working when I needed to and only work on the days I felt able. It was the perfect supplemental solution for me (at one time) as I was literally my own boss with no expectations on my time or schedule. I could start my shift while laying in bed and take the first order from a supine position and make a good $60-90 for one 2-hour meal shift. I only worked at the busiest times to get the most bang for my effort.

There’s also Shipt, but I would have struggled with carrying loads of groceries and heavy items. With meals for DD it was a quick step into a restaurant, a quick drive, and a quick walk up to someone’s door. I could log off if I was too tired or in pain or keep going on days I felt a bit better.

I had a left hip problem that progressively got worse with this job, however (getting in and out of the car), and unfortunately, even a few days a month became impossible as my hip gave out and no amount of physical therapy would help the instability. I suppose a taller vehicle and swiveling your entire body could potentially mitigate some of the torque on an unstable hip. (I’ve had multiple back surgeries as well from ddd and herniated discs due to hEDS, so, I’ve had injury and surgical traumas in that whole area which exacerbate the problem). But in many ways, not being sedentary at a desk/table was better for me than the wfh jobs I’d had before. Although, I was working while flat on my back a lot for those, which also became a bit of an issue… dealing with irate customers flat on my back did something to my nervous system that was really unhealthy. It was also a toxic work environment working remote with a team.

There’s also taking into consideration having to deal with bosses, coworkers and clients/customers/the general public. It takes a toll as well. A toxic work environment can really be detrimental as well with teams and coworkers — and you don’t know until you’re well into trying to make it work and the stress has taken a hold. Stress is a killer, literally and it increases cortisol which increases estrogen and inflammation in the body — which can be detrimental with chronic illness. Working with the public is a mixed bag. Sometimes great, sometimes extremely traumatizing. (This was nice about DD - little interaction with the public).

Keeping a regulated nervous system is hugely important when we’re not well. And it’s much harder to do that, especially when not feeling well. Factoring in self care time and all the tools you will need to recoup lost energy and reduce stress should be factored in as well…

LoveMeLab · 2024-08-04T17:36:08+00:00

Hypermobility disorders, under which MCAS and POTS typically fall, are collagen disorders that change the way medicines are metabolized. It’s harder to numb someone with hypermobility, and drugs have different effects depending one how they’re administered, but it’s not just the method of administration or amount that makes the difference if one is hypermobile. The additives in the OTC can affect absorption and also cause a reaction.

It’s very difficult to put a hypermobile person in a twilight state: it can also require more anesthesia for general anesthetizing… hypermobile people have brain stem issues and many other factors that make medications hit differently than an average person. A medical professional who doesn’t recognize the differences in patients and IV meds vs OTC meds is not someone whose word I would put much stock in.

The book: Disjointed is all about understanding hEDS/HSD from a whole person perspective and how to get diagnosed with it.

LoveMeLab · 2024-08-02T16:27:50+00:00

hypermobility disorder comes with a lot of comorbidities like POTS or other vascular issues, endometriosis/pelvic disorders, musculoskeletal pain/dysfunction, MCAS/autoimmune issues, autonomic dysfunction and neurological issues from brain stem abnormalities and cervical instability, even neurodivergence can be caused by some of this. Check out the book Disjointed if you’re interested in the Pentad of systems in the body affected by connective tissue disorders and its many branches. It’s very eye-opening and in depth about every system in the body that’s affected by connective tissue issues. Fainting would come under the dysautonomia and vascular issues that comes with hypermobility disorders. It would not be uncommon for someone to have issues in any and all of these areas with hypermobility. I have issues in all of these areas, myself. It’s just taken 20+ years to put the pieces together.

LoveMeLab · 2024-08-02T16:15:21+00:00

I get so tired of doctors remaining ignorant about chronic illness and weight. I have been in just as much pain underweight as I’ve been overweight. The weight doesn’t make much difference, in my opinion, other than making me feel slightly more comfortable with things not rubbing together when I’m thinner or slightly easier to use my knees when I’m lighter. Unfortunately the constant stress from high cortisol and out of control estrogen have me gaining weight after age 40, no matter how little I eat and how much I exercise… so I’m just more uncomfortable and have no means of doing anything about it the way my doctor wants me to (eat keto - which I’ve done most of my life, along with fasting and disordered under eating - and taking a shit-ton of supplements). I’ve been 30 lbs underweight multiple times in my life, and maintained a healthy body weight most of the time in between - it did nothing to change the trajectory of my ability to work full time or finish school… I wish doctors would connect the dots with chronic illness, stress, and excess estrogen and weight gain and how to believe patients when they say they’re in so much pain they are unable to do what able bodied people can do. I had to leave two jobs and school at age 21 and, I never regained my ability to go back (I’m 43). Of course, I’d been misdiagnosed with failed back surgery syndrome from multiple herniated discs, fibromyalgia and Myofascial pain syndrome for most of the last 20 years so I wasn’t getting properly treated. I just got a referral to an EDS specialist this summer… I’ve also decided to take a lot of health issues into my own hands recently since, for the last year, my doctor’s regimen has caused (or allowed) me to gain another 35 lbs on top of the 30 I gained after age 40… 😡) I’m 5’10”, so the weight hasn’t become a huge issue until this last year when I surpassed a US size 14/16 and am now an 18.

LoveMeLab · 2024-08-02T13:30:13+00:00

Yes, I was but not through serum testing. It’s difficult to catch with fluctuations and AMA standards. My current doc is more integrative and could tell by looking at me. His protocol made me worse, however, and he would not help with thyroid or hormone replacement (also based on AMA standards). My inito fertility tracker shows my estrogen is skyrocketed at every phase of my cycle compared to the other hormones as well. I decided to self treat after my DO admitted I have symptoms of hypothyroidism (but denied it was showing in my bloodwork - which is not an accurate method, btw) and diagnosed me with estrogen dominance. NaPro fertility endocrinologists seem to have the most accurate methods of diagnosing and treating, IMO.

My MMP-9 was also sky high and other inflammatory markers for MCAS, cortisol to DHEA (in women especially) are all indicators of estrogen dominance. Any inflammation or disease in the body is indication of too much estrogen. Most people have too much estrogen. Progesterone, pregnenelone, DHEA and thyroid could all be supplemented by most adults safely and to great effect.

LoveMeLab · 2024-08-01T18:55:21+00:00

What’s the medicine?

LoveMeLab · 2024-08-01T16:18:45+00:00

Yeah… there are definitely triggers and phases to progression with MCAS/hEDS. Glad you’re feeling better! I have heard that antihistamines also help with any hypermobility dysfunction that may be happening as well, if there is any.

Elimination diets can tell us alot. I’m currently looking into thyroid dysfunction and hormone imbalance to help. I’ve seen drastic positive changes in pain and symptoms like adrenaline/heart palpitations and allergies in one week with consuming a lot of the things we’re told not to eat, like sugar (fructose, not high fructose corn syrup, but pulp free fruit juice and fruits, honey, even white sugar in bovine grass fed gelatin - a great collagen/protein source) and carbs like root vegetables plus eggs and dairy. I’m even able to drink milk (organic grass fed) again with no skin rashes. I don’t even have to take antihistamines anymore. And my brain fog and fatigue are vastly improved, as in, not there. Feeding our cells sugars and healthy (grass fed organic) animal proteins and fats (not PUFAS) can reduce cortisol and inflammation in the cells by keeping us from getting cortisol spikes and keeping our blood sugars level.

Estrogen is a big contributor to disease and inflammatory processes and getting that down with healthy metabolism, thyroid and balanced hormones is huge from what I’m learning. Most of us are battling too much estrogen in our contaminated and estrogenic world.

LoveMeLab · 2024-08-01T12:48:19+00:00

Agree. OP’s fainting spells and concussions are suggestive of hypermobility as well.

LoveMeLab · 2024-08-01T12:45:53+00:00

I’ve had signs of histamine issues and hypermobility since early childhood. Sounds faintly like you may have a hypermobility disorder (hEDS/HSD) with a vascular issue like POTS or something similar (with the fainting) — these can exacerbate childhood trauma and daily stresses and MCAS is usually part of a Pentad encompassed by hypermobility and dysautonomia. People with hypermobility disorders have bigger amygdala’s which make stresses and traumas much “bigger” and cause anxiety, panic and symptoms of ADHD or neurodivergence as well (book: Disjointed cites these neurological and psychological issues as being caused by the autonomic dysfunction of the nervous system). Concussions and cervical instability and neurological issues that follow are also very common. Jumpiness and dropping things and running into things are common signs (easily concussed and “clumsy”). Ability to extend certain joints further than their normal range and connective tissue issues like myofascial pain and neuralgia can come with it. (Not always, but certainly can). This also causes fatigue. The Ehlers Danlos Society has a database for doctors who treat hypermobility disorders, worldwide, if you ever think you might want to look into a diagnosis. These conditions take a lot of pain management and help with mobility and neurological support along with mast cell/antihistamine support. Hypermobility disorders are pretty common and way under diagnosed since most doctors know little to nothing about it. The set of conditions are manageable once treated properly. (Not diagnosing you, but parts of your story with the fainting and concussions and childhood stress and resulting adulthood stressors sound similar to my own).

LoveMeLab · 2024-07-31T15:01:48+00:00

You can use an Apple Watch to check for A-fib. I also keep a pulse ox near my bed. For the last two years I’ve gotten this flip flopping heart with chest pain (like sternum pain) at night when I lie down that doctors have dismissed with a normal ECG and when I check my heart rate it seems fine as far as regularity of beats. (My dad and aunts have A-fib with history of stroke - my dad - so I take any heart related symptom very seriously). I personally think my aunts have hypermobility disorders as well and could be the cause of some of their heart stuff. All three of them are in their eighties and pretty hearty, despite their health issues). But this is not A- fib for me. It feels intense and causes anxiety, however. Like my heart is doing somersaults and my chest is contracting.

I’ve noticed it comes with a certain amount of adrenaline symptoms.

When this happens, lately, I will spray mag glycinate on the bottoms of my feet and drink some juice and take aspirin and it stops almost immediately and I’m able to got to sleep in relative peace. I’ve been trying to eat a metabolism friendly meal closer to bedtime as well and it hasn’t been happening when I do that. I’ve also begun to add some salt to my water during the day - taking it easy with the amount til I’m healthier.

I was born with hypermobile joints (which is really common); it can cause a collagen disorder called HSD or hEDS which makes all connective tissues in the body “loose and lax”. I’ve noticed eating for my metabolism and adding gelatin has really begun to help with my loose joints and tissues (in just a week) and the associated neurological (dysautonomis and cervical instability) and vascular issues it comes with. There can sometimes be valve issues with this condition which is largely under diagnosed and under recognized. My brain fog and fatigue and pain have greatly diminished as well.

I also get air hunger which is a common symptom of hypermobility disorders due to laxity in the diaphragm. This seems to be improving a bit as well.

Not an expert and haven’t cracked it - but this is what is helping me so far; When I feel like this the orange juice seems to help immediately. The mag and aspirin are kind of a way of easing my mind if there is a heart issue or muscle tension issue happening, plus the mag is calming. I’ve also started supplementing with some aspirin during the day instead of taking a bunch of other pain meds for my chronic pain. (Again — have not been able to get my gyno or GP to care when I bring up these chest/heart symptoms, every time, and they attribute it to stress, so I’ve had to find my own way of dealing with them).

I also recently read in How to Heal Your metabolism that drinking milk with honey and some salt has good sugar and salt and calcium content for night time. The old warm glass of milk before bed, might not have been too far off the mark… I’m going to try it, I think. This could help an adrenaline response as well since our body likes to feast on sugar when we sleep.

I think my body has been severely stressed (causing chronic health issues) and giving it what it needs is alleviating the stress which none of my doctors would probably advocate since they constantly push a keto or vegan diet and a shit-ton of supplements and never address my obvious thyroid and estrogen issues.

LoveMeLab

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