My health issues began in June of 2017. Prior to 2017, I considered myself reasonably healthy and active, but now, I can barely function. My health issues include being continuously weak, shaky, dizzy and off balance. I have pain in my ankles and pelvis. My ankles have become extremely weak and painful. I cannot wear high heels or exercise except in the pool because my ankles are so weak they will not support my weight. I can’t go up on my tiptoes or ride a stationary bike or I get pin pricks up and down my body. If I contract my muscles, my left foot gets all weak and shaky and it takes forever to stop. I cannot sit on a low toilet seat or wear tight pants because my hip and pelvic bones hurt. It is too painful to get a massage. When I tell this to people or doctors, they look at me like I am nuts. In addition to all of this, I have developed severely low aldosterone but since my cortisol levels are almost normal, I do not fit the profile for Addison ’s disease. Whether this began before or after the other symptoms is not clear. My thyroid is also not functioning well and I have been diagnosed with Hashimoto’s disease as well. I have been to over 50 doctors, had every test imaginable and still have no answers. I am writing this so that perhaps someone can offer some help.
Frozen Shoulder and Prednisone Unleashed My Cascade Into Illness
This all began in June of 2017 when I developed a frozen shoulder and was given prednisone. The doctor told me he could not do the surgery unless I took prednisone. I believe this is what caused my problems but all the doctors said no. They have people on prednisone for years. A little before June of 2017, I was also having sciatica issues and the docs gave me a Medrol pack to relieve the pain and inflammation. I probably took 4 or 5 Medrol packs over a 2 year period. I went to a chiropractor who then stretched my right leg so far to the left, I think he gave me a swollen tendon. When all these things started happening, all of a sudden I could not stretch or get massages or do physical therapy, as I would just get worse and I would get pin pricks up and down my spine and in my glutes, but I was still strong at that point.
A few weeks later, I was walking with my husband and I stepped on a nut and twisted my ankle. Then, in the doctor’s office, I fell again and hurt the other foot. My ankles proceeded to get weaker and weaker and I could not figure out why they would not heal. I did some physical therapy but they never got better. I was still going on bike rides with my husband and it was hard to land or stop because of my foot which was very weak and shaky like the nerves are weak. I fell off my bike a few times and then hit my right hip which has never healed and I have lost range of motion in my right hip as I cannot raise my leg very high to put on my shoe.
After I injured my ankle, I woke up one morning weak, shaky, dizzy and off balance. I could not eat as I had a motility issue, where I was full as soon as I took a bite. I lost a ton of weight which was great but I was very sickly and could not function. I managed to fix my stomach as I increased my thyroid meds and took something called Iberogast which really saved me. It worked and I was able to eat normally again.
Adrenal Fatigue?
I did my research mostly on adrenal fatigue as I have Hashimoto’s. I was convinced I had an adrenal problem. I did saliva tests and my cortisol was low normal in the morning at 7.9 but high the rest of the day so most people did not think I had adrenal fatigue. I took adrenal supplements anyways. They helped a little bit not much. I asked my doc for hydrocortisone and of course he gave it to me. I started to take it and felt better, however, my cortisol was not low. I started to get very hyper even though it made me feel better but I could not relax. I could not wait to get off of it. I finally weaned off and felt weak again. So I started on my adrenal supplement with licorice and started feeling good but still was not totally well. I believe it was the hydrocortisone that worked as it gave my adrenals a break and then when I took the licorice this time, it worked and I started to get better. I could even go on vacation.
Low Vitamin C?
Then, because I was still so overly weak in the morning, I went back to the doctor to go over blood work. My vitamin C was low out of range and I was taking about 4000mg per day of liposomal C, so this did not make sense. We thought, aha! That is the culprit as Vitamin C is supposed to be the number 1 thing for adrenal fatigue. So we did an IV of Vitamin C of 25,000mg with some magnesium and low and behold I got so weak and sick that I got home and felt so lightheaded that I needed to go the hospital. I stayed home and went to bed and drank a ton of water, however, people on the Vitamin C Facebook page told me to keep taking more vitamin C to get rid of the toxins. So I took some more, but it did not help. I got so weak and lightheaded that it scared me. I tried to repeat what I had done in the past but I have never recovered and that was over one year ago so that would be September 2019.
Endless Tests To Find That I Have No Aldosterone
Since becoming ill and learning that I have low aldosterone, I have tried everything under the sun to get better. I have had all kinds of tests such as Lyme, mold, heavy metals, hair tests, saliva tests, macronutrient tests, OAT test, autoimmune testing, you name it I have done it. I have been to 50 doctors and the Mayo clinic and they put me in the fibromyalgia bucket, of course.
I take adrenal supplements to this day. All the docs want me to take Fludrocortisone (florinef) for my low aldosterone. I try not to take it. I went to an adrenal doctor that gave me licorice on top of florinef and it tanked my potassium. I got weaker, shaky, dizzy and off balance. So I got off florinef and licorice and started taking prescription potassium. I got more stable but I am still weak, shaky, dizzy, and off balance.
My left ankle is so weak and shaky, that I cannot walk in bare feet or ride my bike even with a sneaker on. I have taken alpha lipoic acid (ALA) in the past and it helped a little but not much. It is worse than ever now. In the midst of all this my doctor put me on an estrogen pill instead of cream. I am 5”10” and was always a fashionable at 135 pounds, but with the estrogen pill I gained weight and I am now 175. I eat healthy to lose weight but cannot. I have since come off the pill and am using the HRT creams including Estrogen, Progesterone and Testosterone, but cannot lose weight as my body is so weak. I also have not been able to wear high heels, ride my bike, or exercise since all this happened, which is devastating.
Trying Thyroid Protocols
In August of 2020, I decided to do Paul Robinson’s protocol of the CT3M method for thyroid and adrenal. I read his books and tried the protocol of T3 only, as opposed to natural desiccated thyroid since my reverse T3 was 19 and too high according to Stop The Thyroid Madness. I could not fall asleep at night so this seemed like the right thing to do. I got up to 25mcg of T3 for the CT3M dose and then 12.5 at 11:00am and 12.5 at 3:30pm over a couple of months’ time period. I was hoping this would help the low aldosterone but it did not. It did make me a little less weak and shaky in the morning and I also could fall asleep without a problem, so this was an improvement.
I also worked on my iron to get my ferritin up. I had joined the Iron Protocol Page and they say that your ferritin should be 100 to 125 for your thyroid to work properly and in order for that to happen your iron will go high. So I am currently taking 65mg of Novaferrum to get my ferritin up and keep it there. I also take Ancestral Supplements Beef Liver and Spleen to help increase it also. But the T3 only protocol makes my heart race too much and always gives me a high heart rate after breakfast like 96 to 106, which I don’t like and it seems to happen more in the morning after breakfast from the CT3m dose. It has something to do with glucose and the CT3m dose. T3 only does something with glucose but I don’t know what.
I am now transitioning back to NP Thyroid (Natural Desiccated Thyroid) now that my Reverse T3 has lowered and I gave T3 only treatment a good try. I am just too uncomfortable with it and Paul Robinson says we should only use this as a last resort. I have worked tirelessly to get my Hashimoto’s antibodies down with Duanwood Reishi Mushroom and it worked. My antibodies were in the thousands and now they are 10 and 60 out of range instead of 1200. However, I don’t feel any better at all. I have since discontinued Duanwood Reishi, as I believe I have low blood sugar issues (at least it feels like that but it could be the low aldosterone). I have had my insulin checked and glucose and it all came back normal. I did a glucose tolerance test, which was also normal, but it still feels like low blood sugar to me regardless of these results. Again though, these symptoms could be related to my low aldosterone. My renin is low also but I recently started a desiccated kidney supplement with the DAO enzyme for itching and then my renin came back in range-still low but at least in range.
Low Iodine, B2 and B12 Deficiencies and Another Protocol
After joining the T3 only Facebook page, I heard about the B12 Protocol with Dr. GRJ. I started the protocol but continue to get worse. I was able to take my B complex before the protocol but I just tried it recently and now I cannot tolerate my B complex and before I was able to. Before I started the protocol, I did the famous OATS test and Dr. GRJ confirmed that I had a B2 deficiency which begats the B12 deficiency. This made sense to me since I cannot stretch any part of my body without getting a setback of pin pricks up and down my spine, glutes hips and feet. All the lower extremities. I also had blood work done that showed I was iodine deficient. So my blood serum of iodine was 17 Low and the range started at 52 so very deficient. I am very confused with iodine as when I tried to take Lugol’s iodine about 12mg a few years back, I got much worse, more dizzy and off balance. Starting Dr. GRJ B12 protocol, I am currently on 150mcg of potassium iodide and I seem to tolerate that fine, however, my iodine is coming up slowly. The last blood test showed 11 Low instead of 17 Low. I did try to increase it to 225mcg but got more weak and blurred vision so I am staying at 150mcg for now. I proceeded to take selenite and got up to 200mcg but I was just getting so weak I had to stop it for now. I am trying to go back to ¼ capsule and stay there but we shall see.
Possible Thiamine Connection?
My friend invited me to join the Understanding Mitochondria Nutrients page so I did. That is where I learned about thiamine. I decided to try the allithiamine and I made it up to 150mg while still on T3 only. One morning I got up and took some licorice as I was so weak and it was like the allithiamine made the licorice work better. I almost felt normal. However, this did not last. I took my B complex which I guess was a mistake after starting Dr. GRJ B 12 protocol. It made me so overly weak and shaky that I regretted taking it and I am still in that state. This happened a few weeks ago, so I guess it gave me a major setback. I could not tolerate it and you are not supposed to do that anyway in the protocol. I did it because my homocysteine went high after stopping the B complex. This is the BIG ENIGMA that I don’t understand. If I am b12 deficient and am not absorbing B vitamins, can someone tell me why my B complex worked at keeping my homocysteine in range and as soon as I stopped it, my homocysteine went up?? This happened to me several years ago and when I took the B vitamins, it went back down as I have experience with this. Now, after starting the B12 protocol, I cannot take my B complex as I will get even worse. Dr GRJ looked at my hair test and told me I was mildly deficient in molybdenum even though it was in the middle of the range. Not sure I understand, that but I accept it. My hair levels of copper showed very low but my blood serum copper was in range so not sure what to do about that. I imagine it might be better now due to taking Desiccated Beef Liver.
I noticed since taking the allithiamine my blood pressure seems to get lower but I am pushing through still at 250mg. I don’t feel any better and I was on it for about one week then off for a few days and now back on it for the last few weeks. I don’t feel any improvement in my condition of weak, shaky, dizzy and off balance. My hemocrit runs high out of range which means I am dehydrated from the low aldosterone but drinking salt water does not even help. I did however get improvement in all the itching I have had to endure for the last 4 years, it has been a nightmare. Between the desiccated Beef Kidney and the allithiamine all my itch problems are gone. I can now take larger doses of progesterone without itching. I can eat apples and banana and watermelon without itching. You don’t know what a huge relief this is to be suffering with this on top of all my other conditions.
Still Not Improving
I am so weak from the B complex that I took, that now I don’t know how to proceed unless it is the allithiamine backfiring on me, not sure. I am exhausted from researching and going to doctors for no help and just watching my savings account just drain out from under me. I feel completely hopeless, especially since I was always so healthy and had a vibrant career and beautiful life with my husband. This happened to me at 59 years young and I am ow 63. I basically stay at home, never go out, can’t exercise and life is wasting away. My figure has deteriorated as I cannot lose weight and my depression would be overwhelming, but I am able to manage it with the Lion’s Mane Mushroom, which has saved me from severe depression and taking anti-depressants.
I was hopeful that allithiamine would be my answer but I don’t feel any less weak. Maybe it will take longer but I am concerned about my low blood pressure with it. When I google it, it said people take it to lower blood pressure. I should mention though, the allithiamine has helped with my itching. Some supplements would cause itching, like magnesium and alpha lipoic acid. but the allithiamine has helped that. I would also get itchy from certain fruits like bananas, watermelon, and the red skin from the apples. Anything red makes me itchy. When I was on the allithiamine for a few days I could eat the banana without getting itchy. My blood pressure has always been on the low side for me like 95/65. I am using sea salt now and yesterday my blood pressure went up to 120/72 so that was better.
So, finally here I am today. My symptoms are: weak, shaky, dizzy and off balance. I cannot bend over to pick up my cat or pick up things off the floor when I drop things, I cannot wear high heels, I cannot exercise except in the pool, I cannot sit on a low toilet seat, I cannot wear tight pants or hip and pelvic bones hurt, I cannot wear a one piece bathing suit as the tightness hurts my hips and pelvic bones, I can’t get a massage to feel better, I can’t be intimate with my husband in a normal way but we manage somehow, I can’t go up on my tiptoes or my left foot gets much worse, I can’t ride a stationary bike or my left foot gets worse. If I do these things I get pin pricks up and down my body or I get contracting muscles or my left foot gets all weak and shaky and it takes forever to stop. When I tell this to people or doctors, they look at me like I am nuts. They think I am making it up and I am not. When I think about what I say to people, I would not believe me. Doctors tell me I need physical therapy and they don’t believe me when I tell them I cannot do it. They cannot fathom it as my story seems so unreal. It seems unreal to me and my husband. We cannot believe it happened.
Additional Notes
I guess I should mention that I was a “blue baby” or and “RH” baby and almost died at birth. I had a blood transfusion, which saved me, so I survived and lived a pretty normal life. I could never drink alcohol when all my friends could, as the sulfites would make me sick. When I went to Italy, however, I could drink the wine, as there were no sulfites, which was very surprising to me.
Diet and Supplements
I eat healthy to lose weight but nothing works.
- Breakfast: antibiotic free egg on gluten free toast and Irish steel cut oatmeal with almond and honey or stevia. No coffee.
- Lunch and Dinner: Basically grass fed chicken or beef with salad, sprouts, carrots, broccoli and sweet potato or baked potato or a combo thereof and different veggies and salads. How many ounces of chicken or beef, we need to determine protein consumption per day. Your tests show that you are low in protein, and you are likely low in fatty acids. The
- Snacks: combo of fruit like honeydew melon or pears and a piece of animal protein or lentil beans.
Supplements and Medications
My supplements vary but here is what I am taking right now:
- Lion’s Mane Mushroom-5 caps per day
- Adrenal Cortex by Thorne- 2 to 3 caps in the morning depending upon how I feel
- L Tyrosine -2 caps per day –
- Potassium Iodide- 150mcg once per day – why?
- Rehmannia Six Combination from Dragon Herbs- 3 caps x 3-have to take this due to severe weakness
- Echinaccea-2 caps per day-seems to help with weakness for some reason-I read they give it to people with chronic fatigue
- Ubiquinol – 100mg x 2
- Digestive Enzymes- 2 at each meal
- ADK -1 capsule per day-someone told me once that too much vitamin D can lower aldosterone but I cannot find that anywhere.
- Allithiamine 150mg in 3 divided doses
- Pantethine-tried it recently and I used to be fine but ever since Greg’s protocol I think it is making me weaker so I stopped it.
- Salmon collagen-2 caps per day
- Dhea-5mg -still on the fence-thought it made me weaker but will try again as my dhea is super low
- Probiota HistamineX Probiotics by Seeking Health-2 caps x 2
- Licorice Root – as needed depending on how weak I am
- Ancestral Supplements-Desiccated Beef Liver-6 caps per day
- Ancestral Supplements-Bone Marrow-6 caps per day
- Ancestral Supplements-Beef Kidney-6 caps per day
- Ancestral Supplements Spleen- on occasion or as needed
- Ancestral Supplement Adrenal-just bought waiting to try it to see if it helps
- Novaferrum Liquid Iron-1/2 teaspoon or 65mg once in the morning
- Nordic Naturals fish oil-as needed for pain
- Plant based Vitamin C-3000 mg per day in divided doses
- Magnesium Bysglycinate-1 capsule of 250mg at night
- Selenite-200mg-was taking but have stopped right now-might start up with ¼ cap soon
- Molybdate-cannot take yet
- Low Dose Naltrexone – 1mg during day and 4.5 at night for 2.5 years
- NP thyroid -1 grain x2
- T3 -25mcg at 3:00am-weaning off of this to go to all NP Thyroid and small doses of T3
- T3- 5mcg with morning dose of NP thyroid
- Fludrocortisone-take as needed
- Bioidentical hormones for ~10 years
- Estrogen-2mg x 2
- Progesterone cream-200mg per ML- ½ ml x 2
- Testosterone-2/5 mg x 2
- Xanax prescribed in 2019, took it for one year. Weaned off in December 2020.
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I had to stop supplements when I found out what is in them. Most are synthetic, not natural. The natural ones are processed and filled with inactive ingredients ( like cellulose, silicon dioxide ). I now make an effort to get most of my vitamins, minerals from food. Vit c – the whole citrus fruit including peel in the blender with water, Selenium – brazil nuts. B’s – brewers yeast, eggs. Sea weed snacks – vits and minerals. Leafy greens. Carrots and peppers. The supplements i do still take minimally is iron, magnesium, cod liver oil (from natural source) .
Lots of articles on taking too much supplements causing fatigue. I just imagine our bodies working overtime with too much incoming substances taxing liver and other organs.
Hi Melanie Are you still having problems or weakness?
I have a very similar story.. after being told by a massage therapist I mightve been on my way to frozen shoulder (though it was not) on my right side, I visited an orthopaedic specialist who administered intramuscular steroid injections. In the following weeks I got progressively weaker suddenly having difficulties walking and climbing stairs. I ended up in the ER due to increasing pain and was given pain meds and Toradol (strong NSAID anti-inflammatory). Within a couple days it felt like my neck collapsed while sleeping. I awoke to racing heart, high blood pressure, and shoulder convulsions. Returned to ER and wasn’t given any advice even though they administered the Toradol (hard on kidneys). After 2 more ER visits, I was diagnosed with acute dehydration and they again administered Toradol. Also had high urine ketones, and low BUN and ALT (both indicative of malnourishment). I drank pedialyte for 48 hrs to rehydrate and felt somewhat better. However, after just 1 day of going back to water, I ended up back in same situation w elevated blood pressure etc and increasing weakness including my ankles.
A follow up w my GP returned Rheumatology and Fibronyalgia tests as negative. I asked about a possible hormone and/or hormone imbalance but given no answers. I continued to rapidly lose weigh with extreme cognitive and muscle fatigue over following months. I finally tested Aldosterone on my own months later and it came back as Hyperaldosterone. A few months after that, it normalized but I was still weak, fatigued, and underweight. After finally beginning to gain weight and regain some hair, I then finally learned of a test (through continued personal research) to confirm restricted circulation (since that was the mechanism of the drugs I was given) and confirmed it was abnormally low. I learned of it almost 2 years after this all began. Reduced blood flow to all parts of my body including my GI tract causing malnourishment, is apparently what the root cause was.
Hi Melanie, Are you still having issues/weakness? I have a very similar story. I typed it all out but it didn’t post for some reason 🙁 I can tell you how things finally started improving for me.
Hi Melanie,
Your story is heart-rending, thank you for sharing.
I’m wondering if perhaps you have trouble with certain fatty acids, such as phytanic acid – and I notice just how many of them you are ingesting. Phytanic acids are found in the fats of ruminant animals, so that would include any ruminant meat, organs, milk fats and also fatty fish/fish oils. Then there are sphingolipids, which are high in meat, eggs and dairy. See this article:
https://www.hormonesmatter.com/thiamine-deficiency-aberrant-fat/
And this one by Lonsdale and Marrs:
https://mdpi-res.com/d_attachment/cells/cells-10-02595/article_deploy/cells-10-02595-v2.pdf#page17
Maybe this information will be of help.
Thanks Jenny, i will check them out. I tested my VLCFA and they are high out of range. I am getting ready to start thiamine HCL as benfo made me feel better at first, but then it tanked my blood sugar and i got more weakness. I am hoping regular thiamine won’t do this.
Hi Melanie, I hope that helps. Have you looked into the work of Dr David Brownstein and higher doses of iodine? 150mcg of Iodine per day isn’t much.
Hi Jenny, i have but i tried the iodine protocol and i got much worse. I have tried to take the idorol several times with the cofactors and i got much worse. You also need vitamin c and magnesium for the protocol which i cannot tolerate at all.
i would suggest also red light therapy and a microbioma check.. how about the cold therapy to reset mithocondrial methabolism?
What is cold therapy? I have the pemft mat.
Apologies I just posted and my email was incorrect. Ive added the correct email.
I’ve experienced a lot of the same ailments. Please look up Dr Carolyn Dean and her Magnesium miracle book and her RNA Reset products. It changed my life and my family’s. If you Google any ailment with her name her blog will come up explaining how to use the products. For example, you can Google Adrenal Fatigue and Dr Carolyn Dean and her blog should come up. Her specific Magnesium(other Magnesium products did not work for us the same) saved my family’s life – no joke. But it was looong process for each of us. Hope it’s a fit for you.
Hello Tee, I keep trying to Take magnesium but it makes me weaker than I already am and I know I need it . What should I do?? Melanie
I would look up the Root Cause Protocol by Morley Robbins. Many in the Magnesium Advocacy Group on FB share their hyper sensitivity to magnesium and how to introduce it gradually. It’s worth a try.
Thanks Traysi, i think i have been there but did not get help from it.
Hi Melanie
I am so sorry to hear about what you’re going through. It is so tiring and it definitely slowly wears you down – that’s for sure! I think peri & menopause just wreaks havoc with some of us 🙁
Also, as you & many have eluded to here, once you have 1 autoimmune disease, you tend to get more. I think the ladies here have been spot on too.
I’ve been so unwell myself for so long now with not many answers (apart from low dhea & cortisol levels that are all over the place – btw, have you done the DUTCH test = Google it!), that in the end I spoke to and saw 3 clairvoyants. 1 of them I wrote to in the UK said an undiagnosed thyroid disorder & possibly Lyme disease, and the other 2 (in Australia – I live in Australia) said to DEFINITELY see a neurologist and to not take no for an answer. That to tell them to keep looking & eventually they’ll find what’s wrong & it will be fixed. This has lead me to thinking that I have pernicious anemia (PA) of which I have ALL the symtoms and I’ve read that so many people that have issues with the thyroid, also have issues with B12 too. I’ve also had Crohn’s Disease for over 20 years now too, so I would hazard a (pretty educated) guess that my body has malabsorption problems.
Anyway, what I also wanted to add was that a friend of my sister heard about my symtoms (ie her symptoms were similar to mine), so she told my sister to tell me to get checked for the MTHFR gene mutations/variations – which I did, and they came back ‘positive’. So since about 2 weeks ago, I introduced & have been taking a tri-blend of liquid B12 (which I hold in my mouth for at least 30 seconds before swallowing it (I got a HUGE buzz the first couple of times I took it, then my body got used to it) and a 5-MTHF supplement. I have since gotten a little bit of my energy, strength & balance back (and less pins & needles too) – thank God, and the shakes/tremors have improved as well. Previously to that, I was bedridden with tremors and burning arms/hands/legs/feet most days and it got so bad that I could barely walk. So please get tested for those.
*please note that your circulating B12 levels can come back as ‘normal’ on your blood tests, but you can still have all the symptoms of PA.
And if you wouldn’t mind me saying, I would recommend stripping everything right back and just start with one thing at a time. That would also give your bank balance a bit of a break too 😉 I think you do have a problem with histamine (and maybe the mthfr gene mutations too) and so I think you should test for that asap and definitely eat right (for your symptoms) & focus on the right thyroid supplements + take the B1, B12 & potassium (eat a banana!). Try some of the Mag spray or cream or add some epsom salts to your bath. Just keep it really simple for a while and don’t bombard your body with too many things – especially if they’re not helping, you’re just wasting your money right now.
There’s also really good tests for B12 (PA) anemia too (as that’s a really, really sneaky one that one) – so PLEASE checkout this guy’s site. He’s awesome and he explains everything! He’s amazing. (I’ll post the link below).
Start with those things (and maybe add pregnenolone trochets later on?). Chelation might be too much for you right now, so just keep it fairly simple. Definitely check your kidneys though – like that lady said to do 😉
Anyway, let us know how you go and I am sending you so much love, healing light & prayers!
Louise
❤??
PS I had frozen shoulders as well & I definitely think that that was/is mthfr/b12 related & all the anesthetics/nitrous oxide really messed with me too! You can Google & read about how nitrous oxide etc destroys B12 levels. I felt worse & worse after every operation that I had, and I’ve had 7 ops in 14 years.
Here’s that guy’s site, it is SO good. Make sure you read/scroll all the way to the bottom! Also, another couple of women’s stories that you (or other people that come here) might find helpful.
God bless and here’s to better health! ? x
https://perniciousanemia.org/
https://www.google.com/amp/s/www.chicagotribune.com/lifestyles/health/ct-a-mother-s-struggle-with-vitamin-b12-deficiency-20170327-story.html%3foutputType=amp
https://www.ailsafrank.com/could-you-be-suffering-b12-deficiency
Hi Melanie
I am so sorry to hear what about you’re going through. It is so tiring and it definitely slowly wears you down – that’s for sure! I think peri & menopause just wreaks havoc with some of us 🙁
Also, as you & many have eluded to here, once you have 1 autoimmune disease, you tend to get more. I think the ladies here have been spot on too.
I’ve been so unwell myself for so long now with not many answers (apart from low dhea & cortisol levels that are all over the place – btw, have you done the DUTCH test = Google it!), that in the end I spoke to and saw 3 clairvoyants. 1 of them I wrote to in the UK said an undiagnosed thyroid disorder & possibly Lyme disease, and the other 2 (in Australia – I live in Australia) said to DEFINITELY see a neurologist and to not take no for an answer. That to tell them to keep looking & eventually they’ll find what’s wrong & it will be fixed. This has lead me to thinking that I have pernicious anemia (PA) of which I have ALL the symtoms and I’ve read that so many people that have issues with the thyroid, also have issues with B12 too. I’ve also had Crohn’s Disease for over 20 years now too, so I would hazard a (pretty educated) guess that my body has malabsorption problems.
Anyway, what I also wanted to add was that a friend of my sister heard about my symtoms (ie her symptoms were similar to mine), so she told my sister to tell me to get checked for the MTHFR gene mutations/variations – which I did, and they came back ‘positive’. So since about 2 weeks ago, I introduced & have been taking a tri-blend of liquid B12 (which I hold in my mouth for at least 30 seconds before swallowing it (I got a HUGE buzz the first couple of times I took it, then my body got used to it) and a 5-MTHF supplement. I have since gotten a little bit of my energy, strength & balance back (and less pins & needles too) – thank God, and the shakes/tremors have improved as well. Previously to that, I was bedridden with tremors and burning arms/hands/legs/feet most days and it got so bad that I could barely walk. So please get tested for those.
*please note that your circulating B12 levels can come back as ‘normal’ on your blood tests, but you can still have all the symptoms of PA.
And if you wouldn’t mind me saying, I would recommend stripping everything right back and just start with one thing at a time. That would also give your bank balance a bit of a break too 😉 I think you do have a problem with histamine (and maybe the mthfr gene mutations too) and so I think you should test for that asap and definitely eat right (for your symptoms) & focus on the right thyroid supplements + take the B1, B12 & potassium (eat a banana!). Try some of the Mag spray or cream or add some epsom salts to your bath. Just keep it really simple for a while and don’t bombard your body with too many things – especially if they’re not helping, you’re just wasting your money right now.
There’s also really good tests for B12 (PA) anemia too (as that’s a really, really sneaky one that one) – so PLEASE checkout this guy’s site. He’s awesome and he explains everything! He’s amazing. (I’ll post the link below).
Start with those things (and maybe add pregnenolone trochets later on?). Chelation might be too much for you right now, so just keep it fairly simple. Definitely check your kidneys though – like that lady said to do 😉
Anyway, let us know how you go and I am sending you so much love, healing light & prayers!
Louise
❤??
PS I had frozen shoulders as well & I definitely think that that was/is mthfr/b12 related & all the anesthetics/nitrous oxide really messed with me too! You can Google & read about how nitrous oxide etc destroys B12 levels. I felt worse & worse after every operation that I had, and I’ve had 7 ops in 14 years.
Here’s that guy’s site, it is SO good. Make sure you scroll/read all the way to the bottom! Also, another couple of women’s stories that you (or other people that come here) might find helpful.
God bless and here’s to better health! ? x
https://perniciousanemia.org/
https://www.google.com/amp/s/www.chicagotribune.com/lifestyles/health/ct-a-mother-s-struggle-with-vitamin-b12-deficiency-20170327-story.html%3foutputType=amp
https://www.ailsafrank.com/could-you-be-suffering-b12-deficiency
Hi Louise, thanks for all your lovely thoughts. At one point I did think I had pernicious anemia and I joined the group from the UK. I did methylcobalamain shots about 27 injections all in a row but I never got any better and I take methylcobalamain now. I was also tested for PA including the intrinsic factor but it all showed negative. I get very weak after eating so I think it is my pancreas. I do have the mthfr mutation 1 copy which is why I take methyl guard by Thorne but I need to increase to stop the itching. Magnesium makes me worse not sure why but I think it lowers blood sugar and I bet my pancreas is weak and liver is not storing enough glycogen or something like that.
Mag can lower ACTH which in turn lowers cortisol, in big enough doses
Hoping you ACE can help with this
Some folks, me included, have had to use up to 10 or 15 a day
Cortol ace, an alternative to Thorne ace, is cheaper and seems to have good reviews. I am going to try this soon
Andy cutlets chelation protocol is perhaps worth looking at
And, if you have the money, IV NAD can produce a mitochondrial reset that is potentially curative for some – albeit it’s expensive
Hi Melanie, You shared you had an Oral Glucose Tolerance Test which was normal correct? Sharing my path in hopes it can help you and why: When I entered post-peri-menopause and early menopause I was shaky all the time. An Endo shared this was due to hyperinsulinemia confirmed by a 3-hour OGTT. 3-hour is critical in order to get a baseline and see how your body handles the glucose load afterwards. Mine went as follows: Baseline 105. 1-hour 76. 2-hour 84. 3-hour 89. The rapid drop caused a massive shock to the system despite being “within range” to the eye of most primary care doctors. Took an Endo to catch this. This was at the root cause for my 1. anxiety, 2. blood pressure issues, 3. low morning energy/low morning cortisol/depression/brain fog, 4. quick weight gain, and, 5. frozen shoulder. Large blood sugar swings can and do trigger frozen shoulder. You might want to consider a more in-depth analysis by a GREAT Endo (ask around, who do PCP’s refer to for tricky cases) – the great ones will do telehealth now. Hyperinsulinemia is triggered directly by declining in estrogen. Estrogen in the right amount = insulin sensitivity. Too much progesterone, too much estrogen both cause insulin resistance. Testosterone in menopause can exacerbate hyperinsulinemia. This is not my opinion, this is fact if you research on the respected web sites, as I did, to get to why I was losing my mind in menopause after many GREAT years. I am insulin resistant due to menopause and genetics despite a pretty decent diet and exercise. I don’t look diabetic. I carry most of my weight in my tummy. So, I am on 500mg of Metformin once a day, and a statin. Also on low dose estrogen bi-est topical 1.25 twice per day and 100mg prometrium. That said, after 6 months of taking metformin daily it caused a B12 deficiency – it blocks absorption. I get weekly B12 shots now. Feeling better and closer to normal, but, like you, it has been a long journey. Too long due to undereducated doctors in the arena of women in menopause. Shocking since we’ve been around as long as men!!! Wacky blood sugar levels stress the body intensely. For what it’s worth my A1C when all of this started was 5.5% or non-diabetic so my primary care doc gave me Xanax believing anxiety was simply the aging process (!!!WTF???). My jitters/anxiety/shakiness had NOTHING to do with anxiety (should have known as I was always calm and cool). They were due to fluctuating blood sugars resulting from losing my estrogen. Get an in-depth work up on your blood sugar, insulin function and c-peptide (to rule out LADA), and ask for test strips so you can monitor your blood sugar at home. This could be the root cause of your challenges. I lost 3 years of living life and a job from all of this. Trust me when I say, I cried when I read your story and get what you are going through.
Hello Elizabeth, i do check my blood sugar regularly and it always comes out normal. what is c peptide test and LADA? I tried the Wiley protocol for awhile but stopped it as i did not want to have a period at 63 and i also am having trouble losing weight now and i did not have an issue before. I am on biest and progesterone also. I am in year 4 of being weak, shaky, dizzy and off balance. I was about to go on Florinef but the allithiamine tanked my potassium. No one ever told me it would tank my potassium so now i am much worse because of it. I am trying to get my potassium up now with prescription potassium and then go on the Florinef for low aldosterone. I believe the shakes and weakness is from no aldosterone in my body, probably not blood sugar. Anyhow, can i call you to chat about this? What is your cell number? Melanie
dear elisabeth, mAY I know the name of your endocrinologist? may I know also who prescribed you with bioidentical hormones? i am 31, and I have no period due tO stress. so I developped a series of metabolic issues ( low estrOgen and loW progesterone do so).. and.. my life is a big mess.. i gave up all my dreams .. I was studing to be a medical doctor. i have been prescribed with 25 microg per day of estradiol but i felt sick with a lot of weight gain. thank you for helping. however… i felt a lot better with 25-50 mg of pregnenolone daily, acetyl-l-carnitin, NAC.. a LOT OF im GLUTHATION AND… TRY PEPTIDES LIKE IPAMORELIN-CJC AND SO ON
Hello Luisa, it is Dr. Herbert Slavin in west Fort Lauderdale, But Dr. Harlan Bieley in West Palm Beach is good also. There is also an online woman doctor that does the Wiley Protocol and she is amazing. Her name is Gretchen Jones and her facebook page is fixaflash.
Hi Melanie,
I’m sorry to be so late; did not know you had replied. Don’t have a lot of time but will throw out a few ideas.
As I said before, testing for heavy metals usually is negative and so unreliable. DMSA by IV is too strong a chelator if any mercury (Hg) is present. It will stir it all up, wreak havoc and re-settle into the tissues again. The Andrew Cutler Protocol for chelation describes all this in detail, should you want to try this route.
While many people say you should strengthen the body before you deal with heavy metals, I found that I just got more and more miserable no matter what I did b/c of the Hg. Dealing with that (not finished yet) has made a huge difference and enabled me to do other things that I could not before.
The G6Pd test is a simple blood test. Both Quest and Lab Corp run it.
I began methyl B12 long before I added B1 (other than a simple B-complex). The B12 was a 2 edged sword, for many reasons I believe. One, I think my high use (and need) of B12 used up by B1 which was already deficient. And 2, I think the 2 together greatly increase the clearing of toxins. Your extreme weakness and just feeling “awful” make me think of low B1.(though could be iron, too) Are you taking any benfotiamine? I recently read (here, I think) that allithiamine requires glutathione to process, so if your GSH (glutathione) is low, you would also feel awful. B12 and sulfur are needed to produce GSH in the body.
I take the minerals you mention, but not always in those forms. I never followed his protocol.
I would not take any vitamin D. Even small amounts would make me feel much worse. It is a hormone, not a vitamin. It will deplete vitamin A and magnesium and without enough magnesium and it. K, will deposit Ca in your soft tissue instead of your bones. Cod liver oil is a good source if you need it b/c it has A and D in the right proportions, Check out Weston A Price foundation for reputable brands. I do not recommend fermented CLO.
What is your EMF exposure? (cell phone, towers, computers) 5G has rolled out all over the country since late fall 2019. It is deadly. It increases the inflammatory response tremendously; raises your blood sugar, causes clots, causes iron to disassociate from hemoglobin (your iron problem?), floods the cells with excitatory Ca and robs the body of calming Mag, among other things. I am very sensitive to EMF’s. You cannot heal when bombarded with them. Have you recently gotten a smart meter on your home? Started wearing a FitBit? Got 5-G at work? Do you sleep with your phone? There are a lot of simple things to do to greatly minimize your EMF exposure but it is very important.
You also do not mention whether or not you vaccinate? Something to definitely avoid at all costs.
Lastly, you did not mention if you checked out the RCP Root Cause Protocol, by Dr. Morley or not. It is simple, goes against many commonly held beliefs we all “know” are right. I think he is right about many of his ideas (has research to back it up) for the most part. I encourage you to look into it.
HTH,
Susan
Hi Melanie !
I read very carefuly your history and stepping a little back and looking at the bigger picture here are my insights.
Hashimoto s is an autoimmune disease wich associates often with other autoimmune diseases,this is very important to have in mind. Because your cortisol is quite good we rule out Addison s wich is also an autoimmune disease but we can rule out also adrenal fatigue, bc adrenal fatigue is always in first place about low cortisol and very little about low aldosteron,anyway I think it can t reach such low values of aldosteron like in your case.
Also as I remember you have also low renin /plasma renin activity PRA wich is very important,leading us to the disease category of secondary hypoaldosteronism (aka Hyporeninemic Hypoaldosteronism) wich is a chronic KIDNEY disease and not of the adrenals opposite to primary hypoaldosteronism wich is an adrenal disease but were we have compensatory increased renin levels, wich is not your case.You told me once that someone explained to you that the low renin is from salt and water overload but in your case I don t think this is the cause simply because you compensate for something that you don t have and you are not overload nor with water bc you are rather deshydratated and have low blood pressure , neither with salt bc y ou didn t say to have increased sodium in blood. From this point of view I think you have to go back to a nephrologist to have a clear diagnosis for the kidney disease to find out if there is a kidney problem. Bearing in mind your autoimmune condition , it could be an autoimmune nephritis or a drug induced nephropathy but that is only a supposition,wich could be diagnosed by a nephrologist. Or some drugs could give this nephropathy like non-steroidalantiinflammatory drugs/NSAID ,(but not glucocorticoids like Medrol/Prednisone are related to hyporeninemic hypoaldosteronism like stated in medical studies); did you take in the beggining when you had the frozen shoulder and the sciatica some NSAID or only steroids like Prednison and Medrol? NSAID are like Ibuprofen, Diclofenac etc..Other drugs wich could impact kidney renin secretion are heparine, beta blockers, wich are not your case,but also estrogens have an impact on the renin angiotensin aldosteron system ,I found studies that show that HRT with estrogen, doesn t matter if oral or transdermal decrease renin activity and aldosteron. Also there is a lead nephropathy with low renin /aldosteron but you said your lead was mild elevated and that you treated it. So I think a nephrologist has to say if there is a nephropathy(kidney disease) , if the cause is of an autoimmune or drug induced. You need to try further to have a diagnosis and to establish the cause of hypoaldosteronism, and I think it is in the nephrologic area.and then you will now for sure if you have to take fluodrocortisone or not.
On the other side, your disease started with neurological/reumatological problems( frozen shoulder, sciatica,muscle and nerve pain , you can t stand on your tiptoes and you have weak ankles -you have to see a neurologist because it could be also a disease of the nerves maybe also inflammatory or autoimmune ; did you see recently a neurologist or make an EMG /ENG /electromiography/electroneurography to see muscle/nerves activity? I would do so.
So having in mind the three different conditions at the beginning of your ilness-the neurological impairment sciatica /frozen shoulder/maybe nerve impairment /need to check with neurologist and EMG ; the low aldosteron in association with low renin activity wich leads us to the hyporeninemic hypoaldosteronism wich is found in nephropathies-autoimmune or drug induced(and not in adrenal diseases) and the Hashimoto s wich is an autoimmune condition and it was very serious altered at the beginning with very high antibodies like 1200 you said, I think there has to be a connection between this conditions, and the most reasonable thing to think of is autoimmunity or some drug interrelationships . By the way, before june 2017 did you have a major stress in your life or a prolongued stress? This could have been triggerred the autoimmune response.
Also Melanie I think that all the nutritional defficiencies that you have like Vit B2, Vit B12 , iodine or Vit B1 may contribute of course to how unwell you feel but can t be the root cause for your such low low aldosteron,and low low renin, wich is your main problem and I think rather it s the domain of nephrology.
So I wish you further succes and to resolve your problem and to regain health this year!!!
Hello Nicoleta, thank you for responding. I have been to a nepherologist and a neurologist and they cannot find anything wrong.
You said you weaned off Xanax in December. What dose were you on and how long did you take to taper off? Also, did you ever take any Fluoroquinolone antibiotic like Cipro, Levaquin, etc.?
Hi Jane, II was on .05 mg x 2 and it took a few months to wean off. I have not taken antibiotic in over 15 years
Hello Susan, Thanks so much for responding. I had a heavy metals test, but only lead was a little high and everything else was good. They gave me dsma for the lead. You are right about adrenal fatigue, i have done everything and nothing raises my low aldosterone or helps me feel any better except licorice or florinef. My cortisol was not really low on the saliva test anyways. Only a little low normal in the morning so my adrenals are producing cortisol. I know that i need magnesium but i cannot seem to tolerate it as it makes low aldosterone much worse as magnesium is antagonistic to sodium. Whenever i take it my symptoms get much worse so i am not sure what i should do there. How can i take it then? No, i have not been tested for a G6PD deficiency. Is it a blood test? Chandler said the Vitamin C is dehydrating and reduces sodium in the body which is why i had such a terrible setback from it. I would like to find the research on that but i cannot find it. Susan, so you got better when you added in B12 after taking B1? Were you using selenite and molybdate or selenium and molybdenum. Dr. Greg says it has to be selenite and molybdate in order for our bodies to use it. I am glad you said that though as maybe the B1 will help me to tolerate the protocol easier, not sure. I am getting off of T3 only and going back on NDT but am starting to feel worse again. I am getting more dehydrated and more weak and shaky now. It is such an awful feeling and i have to work. I can barely stand, I don’t understand why the allithiamine is not working yet. I am up to 250mg so far. I know my issue is low aldosterone but my adrenal function seems ok. Not sure what to do but Dr. Greg says the functional b12 deficiency suppresses aldosterone too. I stopped taking the iron after seeing what Dr. Chandler wrote. I belonged to the Iron Protocol facebook group and they said our ferritin needs to be at 100 or 125 in order for our iron to work even if we are post menopausal, but i see no difference in the way i feel anyway so i stopped it. I take beef liver as it is which also has b vitamins in it but i don’t feel any better.
I repeat: please try pregnenolone!! it saved my life many years ago…
you can try treonate mag and also.. you can try to take all your vitamines in the sublingual form
Dear Melanie,
I am so very sorry for your troubles. I understand your sense of despair and hopelessness all too well, but don’t give up! I would encourage you to “listen to your gut” about your own health. I also use the B12 oils you reference and find them an excellent product. However, the researcher (he is not a Dr. that I am aware of) is convinced that his protocol is correct for everyone. I have read of others who had trouble with his recommendations as did I. He absolutely did not believe what I told him was happening in my body. I have learned the hard way that you have to use your best judgment sometimes, even if you are not the Dr. Sometimes, even when we need something, we simply cannot progress with it until we address other issues. God has always been faithful to show me the way when I was way beyond lost!
“Adrenal fatigue”, it turns out is a misnomer at best. I spent years trying to treat mine. I did absolutely everything in the protocols with almost no change. Don’t waste time on that. Anything to strengthen the mitochondria will be more helpful. Same with thyroid. There is almost always an underlying condition driving thyroid problems and just giving thyroid overrides the body’s natural protection mode. “Why” is our body doing or not doing something? When we know the answer to that question we can find answers.
You don’t say if you have a problem with heavy metals, especially mercury? Those of us who are full of mercury often look (on tests) as if we have none. And mercury wreaks havoc with every system and enzyme in the body. I recommend the Andy Cutler Chelation Protocol if you need it.
A few comments/questions:
have you ever tested to see if you have a G6PD deficiency? Your reaction to the vitamin C made me think of this. If G6PD is low, you can suffer a life-threatening reaction to vitamin C as it can cause something called hemolytic anemia.
You are on almost no magnesium. Magnesium is needed for so many functions in the body, including the use of vitamin D and B1. Both of these supplements will deplete your magnesium. I use Remag by Dr. Carolyn Dean. I had used magnesium for years but the difference with her liquid product was amazing. Also, topically, you can try Ancient Minerals magnesium lotion or spray.
People almost never need additional iron, especially a menopausal woman. The Root Cause Protocol, by Morley Robbins, has good information on correcting iron problems without supplementing iron. Our bodies will hide iron if we don’t have the proper enzymes and proteins to transport it safely in the body.
Though I am still working on the correct dosage of B1, I think that has been the overriding factor holding me back for decades. It turns out you cannot use B12 efficiently without it! My B12 levels (blood serum) were always over the top threshold while supplementing UNTIL I began with additional B1 supplementation. Now it appears I am utilizing my B12. (This did not change with the addition of B2, Se, I or molybdenum either)
I hope some of this will be helpful. Hang in there and don’t give up! Please give an update when you are feeling better.
It could be your B complex is too much for your B1 levels to handle yet and that is why you crash when you take it. You might need smaller amounts until your B1 is replenished or greater amounts of B1 as a general rule.
Hello Susan, so sorry for the tardy response. I had to stop the thiamine as i found out it lowered my potassium out of range. I agree with you that it is needed but i also cannot tolerate magnesium either as it is making me much worse with low aldosterone as it is antagonistic to sodium. I took some last night and this morning i am much more weak because of it. I had to go on Florinef due to low aldosterone. Florinef also lowers potassium but i have taken it many times before in the past and with potassium and i was fine. As i got up to 300 mg of allithiamine I got more weak and i now realize that it tanked my potassium but I could not find anything on this site that says you have to take potassium with thiamine. I wished i had seen something about that. Ever since i did the b12 protocol by Dr. G i cannot tolerate any of my B vitamins still and i could before. It could be that my potassium tanked. Thank you for all your help. I hope to be able to tolerate thiamine and magnesium soon, maybe getting on the Florinef will help.
Hi Melanie — in your eeply to Elizabeth — my fasting blood sugar was always normal. 85. And my A1C which is a better measure was borderline 5.6. BUT fasting insulin is what you want to look at. Just had mine done and it was 10 which is too high. You should consider very strongly what Elizabeth said. I’ve had hypoglycemia my entire life and it’s a huge problem. I had the same symptoms at 54 and I developed the frozen shoulder from FRUIT smoothies. Yes fruit. I was also eating high Oxalate nuts and spinach etc. all the time and this messed up my thyroid. but when I added on smoothies is when things got exponentially worse. I also had a severe gall bladder attack. Hope this helps. Hope to see you in the group. Xoxo. Taube Becker
hi taube.. could you explain me better the FRUIT and oxalate story?
did you try the amy myers protocol for thyroid?