2023-02-24, Friday - Energy 16% or more due to <1µg of T4 (levothyroxinej, the ‘lesser’ thyroid hormone): a pixie dust amount - “LD-L” instead of “LDN”.
Sleep 90% / Feeling 80%-ish / nausea 0%, fog 10%.
Successes:
For the side effects my GP had told me to watch out for insomnia and pulse and report back quick if so.
The pharmacist told me to start with half a 25µg pill, so 12.5µg, my GP didn’t - praps trusting I know what I’m doing anyway…
The 4-page “pamphlet” and several webpages pointed me to a whole ton of side effects, but the most difficult ones for me being seizures, additional fatigue as well as insomnia (and pulse/blood pressure) I was swaying between the daring 12.5µg and careful pixie dust knowing my MCAS-overreactions.
Luckily I finally sided on pixie dust. The 4 pix below show 1) the original pill, which I 2) then broke in half, then took that first morsel, then 3) broke the half and took that 2nd morsel, plus the powder, if I 4) put the pill together again it looks as if I haven’t touched it. What’s your guess, not even 1µg, ey? What do we call that, “low dose levothyroxine”? LDN is 10%, only few do 1%, that’d be 0.5mg compared to the normal 50mg pills. This would be about that, 1%?
First I fairly quickly got a moderate energy surge for about 3h, and a few weird feelings, not completely new ones, reminded me of cortisol, altho I read up that cortisol decreases T4, so not sure about the pharmacology of that. But the energy could have been cos I slept shorter, bit of insomnia, that does increase my cortisol.
So that was that energy-wise for today, I thought, now let’s see which further effects come up. But then came my table tennis mate at 3, despite rain and me not having eaten, and I ended up trying to coax him “for science’s sake” to play a 5th game, as I still had no pain and no fatigue. Remember I’ve hardly been managing 2 games recently. It was pouring for the 3rd time by then, and he isn’t interested in medicine. So now I’m at home and amazed. Now getting a bit of histamine reactions (slightly burning tongue), so taking my “midday supps” 2 hours late, good to prevent seizures too, and eating at last. The excitement and surprising table tennis have got the better of me. Bit jittery at the moment… What’s next? Where’s the backlash?
Yours truly Dr.JayCll Mr Shylok-Hide… 
Here Paul Robinson reports that some people don’t tolerate even small amounts of T4, and he’s talking about 5µg or 12.5µg, maybe I’m one of them, just I’m finding out I (they?) have to keep far under that?
So how have I fared today? Didn’t self-care well, cos I didn’t watch out for the haircut and table tennis, so ate every meal late and ate badly in the evening. But I got a lot done, had good energy, no backlashes ever, just sometimes less. When I went to the organic store for 5’ shortly before closing time, I could speed cycle there and back, no limits. It was short, but it was rare that cryotherapy, acupressure or Chinese acupressure could keep energy up that long. Negative effects were at most a little histamine-y tongue burning, but that may have been because of delaying supps & meals, and was well tolerable. Slight heartburn could also be explained by that.
At the moment I can’t see a reason to increase or to stop T4.
My scaling of night time stiffness at 1 of 10, st1, and daytime actually too, has been a strong understatement, so I’ll change my reference point now. Of course my stiffness stops after a few minutes say compared to someone with arthritis, but it is still there the whole day and I need to register it more, even if I personally have got completely used to it. Otherwise I am not considering that I often walk very slowly, like can’t ever keep up with my wife, and often need quite a time to get up and down stairs. Not sure how to define it exactly tho. Sometimes I can go up and down stairs very quickly. I’ll start with putting it up to st3 at night, but I don’t think that’s enough actually. I’ll have to register it, focus on it, think about it.
Learnt: 
Lots about T4 and more.
New Habits: Click for details of the 4 I'm still working on. Last change Jan 14th.
Bed 23:30-8:30/9:00. 
Note thoughts and emotions (ACT) (
)
More leg stretches. ()
Cold foods out of fridge 2h earlier than eating. ()
Today's FM symptoms unchanged from WPI 11 & SSS 9, except....: SSS +0 headache. Changed basic stiffness to 30% (click for details)
Today’s symptoms sorted by the ACR 2016 criteria
Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (10%, stiff 30%) + spine-pain 3 (10%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (84%), insomnia 3 (10%), fog 2 (10%) headache 0 (0%), GI 1 (10%), depression 0
Triggers & resulting Symptoms
JAB#3 (on Nov 7th) causing MCAS / histamine problems, esp. energy narrowed to (10-)15-20%, decreased to mostly 10-15% in January. From Feb 3rd on: 10% energy. Cold tolerance good, just not my fingertips.
JAB#3 (on Nov 7th) → MCAS / histamine since end of Dec: 15-20% energy for under 45’, then white lips & pale face. But if I keep strain down to ‘half speed’ (70%) I can push on thru for hours - with a few breaks and lots of task-switching. Not that much specifically histaminey problems since end of Dec, occasionally sinuses and nausea, no more ill ache. Usually white lips & face 30%, and some sliding instead of walking indoors 10%, bit more cold intolerance 30% (long johns 24/7, 2 thick duvets at night). From Jan on, bit warmer (5-12° C), I’ve swapped long johns for a 2nd pair of pyjama trousers at night and when I’m pretty active at daytime sometimes no long johns, but when out slow cycling/walking. And don’t need hot water bottles any more, whether I can manage a cold shower (usually) or not.
Development summarized: Down: Nov 17th - Dec 1st, worst 17th-18th, best 20th & 29th. Up: Dec 2nd-6th, Down 7th-8th, Up: 9th-14th, best 13th-14th: Winning easily 4:0, and slow energy for 4h! Down: 15th-21st 7 days, Up 22nd to 24th winning roughly 3:1, Unsure: 25th-31st: TT 2:2 or no play possible: 25th 2:2(?), (26th 0), 27th: 2:2, (28th 0 - ordered supps, not cellar), Down: 1st-2nd, 4th. Up: 3rd, 5th. Both: 6th-11th - sinuses, tongue, lips, runny, DAO helping. Cold: 12th. 13th: GI: HP supps? 14th: B3-Flushing up!? 15th: Runny nose, 16th-21st & 25th-26th…: Tongue off and on. 23rd-25th: Sore buttock (& leg) muscles like after the jabs since 23rd. 26th: Cold, pain & fatigue, energy from 18% to 10% since 19th. Triggers tooth cleaning and moving out. 27th: Bad. 28th: Bad to better. 29th: OK, considering. 30th: No burning after 200g baked beans, but a bit, later, after then another 50g, short colon sting praps from the tomatoes, no stronger urge from them tho. 31st: Still haven’t regained appetite. From Feb 3rd on: 10% energy. Cold tolerance good, just not my fingertips. 8th: Bit of tongue after red beans, but OK. Feb 12th 6:00: Stronger histamine-y symptoms and stomach pang. Feb 15th: strong headache evening and night probably from red beans without DAO, praps also the sinus burning. Feb 18th: More energy for the first time. Very red lips, looking inflamed, go white when I press them together. From Feb 19th on: back down to 10% energy, everything else fairly OK, incl. at night, incl. cold tolerance, incl. fingertips, but lips’d be white if they weren’t chapped and inflamed.
Treatments: Antihistamine, and extra GABA from Nov 29th. Stopping the antihistamine at the turn of the year quickly caused sleep problems.
SLEEP (click for details): 7h03, up 5x (65') ✅ ➔ Feeling 80% well, Ache 2 of 7 ✅, getting up: 80%/2 ✅. Nostrils 80% stuffy 20% of the night.
A3 A4 teeth0 cold shower0 p0 Sleep 1:20- Why not 21:00? Bloods & moving. 3rd # is LBU
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
3:00 5’ 80%/2/15% p0 st3 sip fw1’ cough0 deep/ air0 A5 plugs0 cream/ gel/ HWB#0
(nostril/s0% nauseous0% stomach0% sinuses0% headache0% sore throat15% stools0 loose%)
4:10 5’ 80%/2/15% p2 st3 sip fw1’ cough0 deep/ air/ plugs0 cream/ gel/ HWB#0
(nostril/s0/20% nauseous5% stomach5% sinuses5% headache0% sore throat20% stools0 loose%)
5:30 10’ 80%/2/15% p0 st3 sip fw1’ cough0 deep/ air/ plugs/ cream/ gel/ HWB#0 back!
(nostril/s0/80% nauseous10% stomach20% sinuses10% headache5% sore throat20% stools0 loose%)
6:30 15’ 80%/2/15% p0 st3 sip fw10’ cough/ deep/ air/ plugs/ cream/ gel/ HWB#0
(nostril/s10/0% nauseous10% stomach20% sinuses10% headache5% sore throat15% stools loose0%)
7:00 30’ 80%/2/15% p0 st3 sip fw20’ cough/ deep/ air/ plugs/ cream/ gel/ HWB#0 FCS#1
(nostril/s10/0% nauseous10% stomach30% sinuses10% headache5% sore throat15% stools loose0%) Cos of idea, see below “Does PEA work”?
-9:28 B1-4 ‘ in sun, stools loose%
Sum: 9h28-1h20-(5+5+10+15+30=)65 = 8h08-65 = 7h03, up 5x (65’)
ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/2 , stools ➔ 80%/2 , ➔ TT 4:0 (picking up 0 balls) ➔ 80%/1 , moving ➔ 80%/1
ACTIONS ➔ PAINS : except GI: stools loose0% , appetite better from going back to pure veggies (), esophagus: carrots extra works , pee pain: 2xp1-2 , lower back unrest , finger tips: bit worse again, probably washing hands too much/long and not creaming enough in the daytime. (). Lips still red inflamed, pressed to white ().
Click for details on Touch, Covid, Weather, last seizures Jan 14th & 15th, last esophagus block Feb 20th + 5th, last jaw pain praps Jan 30th.
Touch: Covid: Weather: Indoors Outdoors . Daylight lamp regularly on.
Last focal seizures: Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…
Jaw: Hardly & seldom pain since Nov. A bit more in Jan. Jan 6th: Slightly psychosomatic from memory of a painful time. Jan 10th: A bit after tooth cleaning. After: regularly a little bit, 1-2x/d. Better since improving tooth care again and giving that side of the jaw a rest from chewing for a few days from Feb on.
Treatments
Click for details on T4 for thyroid, starting Feb 24th. Results from bloods on Feb 9th: biotin and manganese too high, so I'll reduce, LDH & homocysteine slightly too high, so I'll check, Ω3 much too low, so I'll order it again soon. Not re-starting Chinese acupuncture or cryotherapy and/or acupressure after unsuccessful/harmful last sessions.
Asked GP about thyroid Feb 23rd, he prescribed T4 to try.
Bloods at cardio Dec 9th: Homocysteine a bit high, continue B3 and B2, phosphate not that bad. Leukocytes low! CK, muscular, too high, praps fibro?
SELF-PHYSIO (click for details): 64'
white_check_mark: airing 5x2’, cold shower 1x(10’), cream/oil fc/ey/hd/ft 10x1’, teeth 1x2’, HWB 0x3’, breath exercises 5x1’, Y. Nidra 0’, massage gun 0x3’, daylight lamp/sun 2x5’, plantar/calf stretch 2x1’, acupressure 0x1’, palpate 0’, belly 3’, back 10’, !!aloe vera 0x1’, twist-stretch x1’, yoga/stretching x1’, hang 2x1’. wart x1.
Combine: next?
hunchback-pillow 0’. neck 1+ x1’, RR: 0, neck 2 0x1’, workout 7’, horse stance 1’, balance roll standing 5’, breath-hold 12’, jolt-jump 1’, marionette-hang 1’, shaking dance 1’, bent leg fall 1’.
Supps Jan 8th (48 supps): Supp costs: 466€/m (8th) + 16€/m for empty capsules = 482€/m: Jan 11th: Still to get MSM, manganese, E as tocotrienol and my silymarin again. Yet to try: Creatine? ATP again, encapsulated, for phosphate?? Click for details on the lists, with dosing batches by times and tubs.
ZERO now: Arg, alpha-GPC 1x150mg, fisetin: 0x196mg, huperzia A, mumijo, NAC 1*.5g, NADH, psyllium (Ps), Ribose, Serrapeptase, Zinc, P5P (= vit. B6) 0x27mg (high).
REGULAR as of Jan 8th (48 supps): (R-)ALA .2g, aloe vera juice 50+ml/d, apigenin 1x50mg, vit. B2 6x600mg, vit. B3/Nia 6x0.6=3.6g, vit. B5/Panto: 3x.5g vit. B12 (methyl-C) 1x5mg/4m s.c., AND B12 1x0.2mg (all 3 good types) WITH vit. B9/5-MTHF 1x0.4mg, vit. C 2x3x.5g, L-carnitine (Cr) 8x0.6g, copper (Cu) 1x2mg, vit. D3 20.000 IE = 500mcg, WITH vit. K2 (MK7) 200mcg, DAO before meals, EGCg 1x(50%, incl. L-theanine?).5g, ellagic Acid (Ell) 2x.2g (+43mg vit. C), eleuthero (eleu) 2x4,5mg, feverfew (fev) 3x.4g WITH 3x.2g MSM, GABA (Ga): 4x0.3g+2x.6g=2.4g, ginkgo (Gi) 3x168mg, (L-)glutamin (gltm, glu): 2x0.6g, glutathione (gltt) 1x250mg, honokiol (Hon) (2%)x2x.4g=16mg, luteolin 1x.2g, magnesium glycinate (mag gly) 2x50mg, mag malate (mag mal) 0x45mg, mag threonate (mag threo) 2x50g, monkfruit 0.1g, myo-inositol 1x1g/1!d, olive leaf extract (oli) 2x.75, Ω3 1x5mg, passiflora (Pf) 3x.35g, Levagen±PEA 1x0.3g, pine bark (pin) 2x.5g, PQQ 1, CoQ10 (Q10)(ubn) 1x.1g, quercetin (Qc) 4x.5g, resveratrol (Rs) (50%) 2x.4g, rhodiola (Ro) 2x.35g, rutin (ru): 1x522. SAM-e (Sa) 2x.1g, Selenium 1x.2mg, Silymarin (Sil) (80%) 1x.5g (+83mg L-cholin), (L-)theanine (The) 1x.2g (+.15g polyphenols) (next 2x0.1mg), TMG: 6x0.6=3.6g (as much as B3). Plus rupatadine/Rupafin 1x/d since jab#3 Nov. Plus practitioners recommendations: #1) masterwort / Imperatoria ostruthium, #2) Hexacyl (Sulphur D4, Lycopodium Ø, Berberis Ø), #3) add Steirocall comp. (for “arthrosis” & bones) (& umckaloabo). Not at all sure about any of these, after 3 weeks of Hexacyl, #4 bitter herbs when Hexacyl bottle is finished, #5 more B5 now, #6 “glutathione activator” → upping MSM, selenium, and have asked if manganese and vit. E are important. #7 Pro Mucosa: added Hericium, can’t increase glutamine, asked back about ficin and biotin, #8 Chlorella, #9 B9 as 5-MTHF for homocysteine.
What-when-details: Updated Jan 8th.
MUCH TOO LATE! AT LEAST 2h LATER.
“16:00” preparing pills
“18:15” A1 PF#1, 2x threo., Lut, Qc#1.
5’ “empty time” = to see if I need worry time.
“18:30” myo-inositol + teeth
“19:30” A2=12+1 2xvB2#1 2xvB3 vB5#1 2Cr#1, PF#2, Cu, .3gGABA CoQ10 (oil) &! Se, 2xTMG#1. Meal: 1PQQ, 5ml Ω3 & Hon#1. monkfruit.
Meal 20: ’ +xylitol. Back exercises. Soak seeds. aloe.
“20:30” pre-A3 agigenin 1h before bedtime + teeth
“20:30” chamomile
“21:00” A3 PF#3 0.3gGABA & .6glu & Qc#2 Hon#2 + 1 Rupafin or A2
“2:00” A4 300mg GABA + teeth
“4:00” +0.25 GABA
B=11/ ’ in sun/lamp “07:00” ALA, Ro#1, Qc#3 Rs#1 2xSAM-e EGCg + Fev/MSM#1 + Sily +2The.
Back exercises.
Soak Soak pumpkin seeds & almonds.
Teeth.
Meal ’ in sun/lamp. aloe.
’ in sun/lamp C=23/ with meal: 2xB2#2 2xvB3#2 vB5#2 3xvC#1 3xCr#2 .6GABA#4, gink#1, Oli#1 pine bark#1 2xTMG#2 2xEleu 2gly PEA Rutin = 23. (vit.D3 1/wk)
xylitol
teeth
“11:00” D1(0) + Teeth (+2h/) Ellag#1, Fev/MSM#2, gi#2.
“14:00” 0 Meal ’ in sun +aloe
“14:15” D=15/ ’ in sun vB2#3 "2"vB3#3 vB5#3 3xvC#2 3Cr#3, .6GABA#5, gink#3 Oli#2, pine#2, TMG#3
xylitol
teeth
“16:00” preparing pills: 5x to encapsulate.
E “17:00” (“meal/acids+2h”) Ellag#2, Fev/MSM#3 Qc#4, Ro#2, Rs#2.
A1 “18:00”
myo-inositol
Eat + aloe + PQQ+Ω3 if not earlier.
A2 + apigenin & heating down
(B12 s.c.: 2022-11-04, 2022-04-10, 2022-01-10: B12 5mg methylcobalamin s.c.)
eve:
The day's supp-compartments (8', plus 10' making capsules), Jan 8th
Pf: A1+A2+A3, vB2: 2A,2C,2D. vB3: 2A,2C,2D. vB5: A,C,D. vC:0A+3C+3D 8Cr: 2A+3C+3D, Ell: D0+E. Fev/MSM: B,D0. Ga 4-5x: a2,a3,a4,C,D, Gi: C,D0,D Glutathione: B. Hon:A2.A3. Oliv: C,D. pine: C,D. Qc: A1.A3.B.E Ro:B,D Rs:B,D SINGLE: A1: 0xMgMal, luteolin. 2MgThreo. myo-inositol (15’ before meal 1x/(2)d) A2: Cu (separate from P5P etc.!)+0P5+1xQ10 (->ubiquinone <150mg/d! atm ubiquinol), 1xSe. (A2:Ω/Pq:meal, A3: apigenin) A3: Glutamin (0c1), B (or C): ALA, EGCg, 2xeleu, , Ru, 2 Sa, Sily, 2Th, C: 2 Gly, PEA, DAO before risky meals? monkfruit usually evenings, aloe vera. D3 saturdays. (A2:0Se, up soon)
TALLIES Jan 9th: correct?
A1=6+1 Pf#1 Qc1#1, Lut, 2 MgThreo, + myo-inositol + (DAO?)
A2=16 2vB2#1 "2"xvB3, vB5#1, 2xCr#1, Cu, Pf#2, Ga#1, Hon#1, Q10, Se, 2TMG#1 + Rup. = 16
+Ω3/PQQ/aloe +monkfruit +apigenin 16(+5) -1 vB5 = 15.
A3=5 Pf#3, Ga#1, Gltm, Hon#2, Qc#3
A4=1 Ga, A5=1 Ga#2
B=11 ALA, EGCg, Fev/MSM#1, Glutt, Qc#3, Ro#1, Rs#2, 2xSa, 2Th, Sily (DAO?) = 11/
C=22 2vB2#2 "2"xvB3#2 vB5#2 3xvC#1 3xCr#2 Ga#4 Gi#2 Ol#1 Pin#1 TMG#2 2xEleu 2xMgGly PEA Rut = 22 - vB5 = 21.
D0=2 Ell, Fev/MSM#2, Gi, + (DAO?)
D=15 2vB2#3 "2"vB3#3 vB5#3 3xvC#2 3xCr#3 Ga#5 Gi#3 Ol#2 Pin#2 TMG#3 Fev/MSM#2
25th: -vB5#3: so only 14/
E=4 Ell, Qc#4, Ro#2, Rs#2. Fev/MSM#3
B12 4-monthly, D3 Saturdays.
Development
Someone asked me if taking PEA “works”…
Like almost all of my 50 supps symptoms increased when I have paused it . Generally I have all of these under control my MCAS, fibro pains (since the 3rd jab even the fibro insomnia), IBS, lipids and bp. All except the severe debilitating fatigue. But PEA isn’t said to be for energy/fatigue. So yes, from my trials/analyses it does work - for me. Otherwise I wouldn’t take it. I spend 15€/m on it, middle field of costs.
More important is the definition of “working”. Nothing I take or do except GABA has more than say 5%? of an effect on my symptoms. So PEA is one of 15+ MCAS supps, one of 20+ fibro supps (pain, alertness, energy, sleep…), one of 15+ lipid and one of 15+ bp supps, and my my IBS control comes mainly from perfected elimination diet. My most potent supp generally is GABA, which very clearly works on most of my fibro and most of my MCAS symptoms, making a difference of 80% to the MCAS histaminey burning, to cortisol effects, 100% to my seizures, and 20%+ on my sleep, pain, alertness, stiffness etc. Compared to that everything else I take is “close to nothing”. Not like: Take PEA and it’ll make a difference of 50%, no way. And yet as said if I stop any one of them, I notice a difference of a few %, and that’s because I monitor everything so closely (on my blog). Also for my fibro pain, energy, & sleep symptoms etc. I do a great deal of mental, physical and trigger prevention and alleviation work, so it’s not only supps. If I count each single supp that’s 50 interventions per day, each mental type about 10, each physical type about 30, each food that I have had to eliminate 200++ for IBS, hyperacidity and MCAS/histamine, so together that’s several 100 interventions every day that I have to “remember” and “do”, altho much of it, like saying “no” may be automatic. But when I’m together with normal people and they try to offer me things or help, it’s a whole row of "no"s until they get a hang of how complicated my life is compared to theirs. But that’s how I get a high quality of life (esp. the mental and physical aspects), despite only being able to move very slowly due to quick exhaustibility and loads of symptoms “under control”, compared to other people with praps similar severity of fibro and MCAS… That whole system completely breaks down if I don’t almost DAILY use each and every one of: a cold shower, my back exercises, my acupressure, my massager, my way of eating (esophagus blocks), radical acceptance, mindfulness, NSDR, etc., whilst it wouldn’t completely break down from leaving off 1 single supp(?) of the 50, except GABA.
‘Research’ today: Lots. Where do I begin?
Teitelbaum says FM/CFS people should try T4 or Armour for thyroid even with good blood levels Levothyroxine Sodium - an overview | ScienceDirect Topics ( Chronic Fatigue Syndrome
Jacob Teitelbaum MD, in Integrative Medicine (Second Edition), 2007)
Lessons in self-care #586 Terrible self-care today, so going to bed a bit hungry. Better tomorrow, please…
Reasons to be cheerful #627 Squirrel popped up on our balcony for the first time in yonks today!
Simplified #18 Box as reminder to get a new batch of apples out of the cellar.
Simplified #19 I read new post thru inside of minutes if nothing to keep or do.
Click for links to jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting
- 8 weeks after jab#3: stabilized
- 1st Jab-sfx-summary, last edit: Feb 7th.
- My food apparently minus broccoli…
- My blog references, e.g. abbreviations, supp chart/overview
- My “How to symptom track & trigger hunt”
- Next up…: Summaries
- Research ToDo: supps webinar on Dec 2nd, fibro webinar transcripts, the MCAS summit, read