I’ve been a little 2 steps forward, 4 steps back. Some recent hormone tests showed cortisol through the roof, all other hormones tanked. I was told my stress was just too high, which seems ridiculous since I haven’t been able to work for Quite a while and my long suffering husband does his best to pick up all the loose ends. I’ve been resigned to this new normal for quite a while and feel no capacity to ‘stress’ about it. (Though family and friends say it must be stressing me. Believe me I know what stressed out feels like and my MO is more like watching the world go by but breathing in and out. Diaphragmatically whenever the notion pops to mind.) I can meditate really well due to brain fog creating a blank slate. So what gives.
After much research and little improvement, ordered second round of hormone tests but see that even if a referral to an Endicrinologist leads to an answer, it’s nearly guaranteed to not have a good result improving my state of well being.
In the past adding cbd oil could help daily functioning quite a bit but go-to brand had been out of stock for quite a while. Scored 2 bottles this weekend and started trying to recover. It took only a morning to feel 80 percent better. Going to spend the week looking to stock up on the cbd oil; also looking forward to receiving 2 new migraine protocols in the mail this month. One is a vagus nerve stimulator (price tbd but first month trial is free, yahoo) and the new migraine prevention monthly shot. Fingers Xd all around!
We’ve been gone on vacation to Whitefish MT the past week; it was a success in that I had more energy overall and could participate in meals and some walking outings. I’m hopeful that this week’s DUTCH-hormone testing at ND will improve things further.
In the meantime, I’m struggling a bit with finding a balance in pushing the envelope to ease out of the habits of just squeaking by. I could use some advice! Setting modest daily goals for now.
I made the decision to hire a life coach probably 3? months ago when I was feeling fabulous and thought I’d get back to work. In hindsight I think I felt so good because of finally getting first bit of thyroid T3 meds and doing lllt laser treatments at same time which combined for superstar energy. I absolutely will get back there! In the meantime, this coach of mine has really been a mixed bag. I’ve thought about just taking a loss and cancelling last sessions but figured I’m used to low value specialist appointments. The person was trained by Oprahs coach Martha Beck, and seems to want people to find their ‘real’ calling to replace typical career. After being sick so long I’m all about helping pay bills with a steady income. Now that I’m feeling pretty good again (thanks increased T3 & lllt!), the coach wants me to ponder how I’ve benefitted from being ill so long. Erm– I am the master of looking on the bright side, but this smacks of how could I have caused Cfs and ‘hung onto it’. Puhlease. It is not my fault doctors are ‘practicing’ medicine and can’t diagnose thyroid resistance to save their lives. My life.
Onward to goal setting. Any other ideas please share, have Google-fatigue on Cfs recovery steps which amounts to preachy ridiculous stuff like graded exercise. Without the T3, exercise would have dug me further in the hole Fer Sure. On bad days I just wave my arms in the air for a couple mins. Ha!
I’m excited and beyond PO’d all at once. Going with excitement for now. Within 24 hours of ordering T3 from another country out of complete desperation and lack of faith in healthcare providers, my naturopath finally agreed to increase T3. I’d been on a microscopic dose of 5mcg cytomel twice daily since I begged for it about 6 months ago. Last night & this morning has doses of 7.5mcg of compounded/sustained release T3 and had a full, functioning, brain-on day. Shopped at so many stores I lost track. (Nope not manic, we have a trip coming up and I’ve done zero to prepare; thought I’d just be tagging along like a potted plant.) Made dinner, cleaned, did mom stuff. Amazing!
I googled thyroid and Cfs and was stunned to find this article referencing ideal ranges for those with low thyroid symptoms but ‘in range’ results. I’m going to print off and bring to ND to facilitate future dosage conversations. Here’s the page; test ranges are about halfway thru article.
About 6 months ago my brilliant naturopath suggested I research low dose naltrexone or LDN as an optional tool in my healthcare. I gave it a try, and only in hindsight after letting prescription refill linger for 2 months did I realize what a huge positive impact it has had on my health. I restarted taking LDN daily about a month ago and had immediate improved energy, concentration and lessening of food sensitivities. I am attempting to get a prescription for my son (recently diagnosed with inattentive ADHD and MCAD) – it is an uphill battle. There is quite a bit of data online supporting LDN for pediatric chrons, PANDAS and autism behaviors. I am determined to find help for him. Thank goodness for the Internet.
/// Update regarding low dose naltrexone::: the medicine helped in so many ways, my favorite being ending shingles recurrences (10 plus outbreaks last year! Grr) However– since discovering iodine deficiency and supplementing that, I’ve dropped ldn and have even better results. Ldn did bridge the gap! ///
It’s been a couple years since the first post, and the entire time I’ve been looking for solutions to 2 critical heal issues: chronic daily migraine & fibro pain (mine) and allergy & speech impediment issues (son). Thankfully, there are recently GREAT things that have happened healthwise for both of us!
Focus for now is on recapping chronic daily migraine recovery. Key points, in reverse order of finding them but in correct order of importance!:
Mast Cell Activation syndrome / disease. Also known as MCAS or MCAD. Googling the heck out of this and scouring everything – found a regimen recommended by Dr. Afrin in his book “Never bet against Occam”. This is keeping 24×7 migraines away: Twice daily: 1 Zyrtec, 2 Pepcid. Low histamine diet. Digestion itself triggers a histamine mast attack in your body – so if consuming more than 100 calories take Ketotifen (prescription) just prior to meal.
Over time became allergic/sensitive to everything. First dairy. Then gluten. Over time ANY food other than zucchini would trigger a reaction resulting in migraine. This is a sign of mast Cell disease! Being on the correct meds for mast Cell has resulted in not only no migraines but very few food allergies. Gluten and beef are the only foods that will still trigger migraine even in small amounts.
Low iron/ anemia detected no matter how iron-rich my diet & supplements. This combined with migraine and other inflammatory responses should have been a much earlier pointer to Mast Cell disease and will test to confirm it is now resolving.