Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I had a hyper-thyroid after my first pregnancy = :)
I had a hypo-thyroid after 2nd pregnancy = :(
I've been thru nursing school and it didn't even connect, but it makes sense.
Thank you for sharing!
One that "normal range" is 95% of the population. I would not have a problem with that if 95% of the population was healthy. However, if you look at the national diabetic webpage their numbers say that roughly 1/3 (33%) of the US is diabetic or PREdiabetic and therefore not in a healthy state.
If you look at the American Heart Assoc webpage they give similar numbers of about 33% of the population having some kind of heart issue which is not healthy. Now some patients with diabetes do then go on to have heart/cardiovascular issues. So lets say 10% is an overlap this leaves 33+23=56% with (pre) diabetic or cardiovascular issue + 20% of the US population has some type of autoimmune issue. So roughly 3/4 of the population has some chronic unhealthy condition. But the medical establishment ONLY treats the bottom and top 2.5% of the population. Which by the way is not a nation wide standard but varies not only from state to state but one institution to another. So if you are in FL where Vitamin D3 is higher you might get treated for level of 33 where in MI that number is not in the bottom 2.5% and therefore NOT treated.
Sometimes doctors will refer to this as subclinical hypoX when you are in the lower part of the "normal range" but not actually deficient ie bottom 2.5% of the population.
Yeah I think we need to go by what RESEARCH is saying is associated with healthy and use those numbers for a "healthy range." So research says that D3 below 55 is associated with much more breast cancer, colon cancer, MS and RA so you should not be below 55.
1.) My point is that some doctors consider being in the bottom 10% of the population as healthy because it is in the 95% range even if research says this is more associated with disease. Other doctors have read the research and treat these lower portions of the 95% range.
2.) People know about insulin resistance. This is when you have insulin in the blood but your receptors don't work like they should to this hormone. So you have high levels of insulin in the blood but you are resistant to them. However, many doctors seem to be unfamiliar with THYROID resistance which works under the same premise. If you have PCOS or other issues they are known to carry some thyroid resistance.
3a.) If you have both low T4 (4 iodines ) and T3 (3 iodines) then there are options such as bio-identical Armour thyroid (has both T4 and T3) .
3b.) However, if you have plenty of T4 but not enough T3. Then you may have an issue with deiodinase enzyme that breaks 1 iodine off of T4. So T4 can convert to more active T3. If this is the case then you could look into Cytomel (pure T3 hormone).
If you are put on thyroid medication PLEASE do your research on Synthroid (synthetic- slightly altered version from what your body makes) and Armour Thyroid(bio-identical aka EXACTLY the molecules your body makes).
Best wishes to you in finding what works for you with your doctor.
EP
Yes there has been research on low phenylalanine --converted by liver to --> tyrosine --made into-> amine hormones [Dopamine, Norepinephrine (NE) and Epinephrine (Epi)].
There is low Tryptophan which I have brought up in previous posts. It is needed for -> 5 HTP--made into-> Serotonin (feel good neurotransmitter)--made into--> Melatonin (sleep hormone).
Plus 3 branched amino acids (valine, leucine and isoleucine) which in some MS participants have been low.
There are also low amounts of B12 but that is only in a small percentage of people with MS...why not all? There are also fat issues in some (per European counsel research) but only in some not all. There are GI issues in some (see how fecal transplant in Australia seemed to stop MS) but no large study, that I could find on this. There are low sex hormones in some people with MS, per research. Terry Wahls reversed many of her symptoms with 3 cups sulfur containing veggies/ 3 cups green veggies / 3 cups fruits and colored veggies each day + seeds, nuts, good oils and some fish. She didn't use amino acid supplements or enzymes.
Does taking phenylalanine explain all of these scenarios? Nope not to me anyway. I would think that there are several subsets of MS with different root causes. Now this might explain why small subsections of MS research participants have low levels of different chemicals while others have different problems.
I have questions.
WHY are some of these levels low?
* Too much / too little HCL to activate pepsin(together they break down protein as HCL activates pepsin) or
*too little secretin to reduce acidic chyme from stomach??
* Too little elastase?
* too little proteases
* GI inflamed due to too much bad microorganisms (fungi/bacteria) or too little good bacteria?
* Allergens /food sensitivities/ autoimmune Celiacs that trigger inflamed bowel and malabsorption
* toxins
* other issues
*Combo of the above which I think is more likely the case
Yeah it is complicated. If you don't TEST to find individual problems then you don't know what is causing the problem for YOU.
I'll be honest I gave my hubby, for about 3 months a piece,
1.) Dr. Michael Murray Proteolytic enzymes
2.) a combo of phenylalanine + L-theonine + tryptophan.
He took these two different combos at two different times.
He did not have any negative side effects but no improvement either.
I have been trying to find good testing but that is something I have REPEATEDLY found to be a problem with conventional docs. They are not testing for enteric organisms, chemicals that cause MANY kinds of immune response (but docs just test for one antibody type only) and do not test fecal matter (poop) for proper liver and pancreatic function.
This is why I mention the MRT and GI function protocol from MetaMetrix to try to help you. If I can find other good tests I will try to put them out. Triad if you have any good tests to determine if this is the issue PLEASE POST.
In the meantime, finding out if you have:
*low TSH,
*low iodine,
* low deiodinase (test will show higher T4 but low T3),
* low phenylalanine --converted by liver to --> tyrosine or
*GI issues which might reduce absorption of iodine/phenylalanine, etc are at your root cause might be helpful.
Good luck carolinagirl123
PS I had a research project on amino acids but it fell through. sigh
So you have research on MS patients taking Phylenanine making improvement to B12 levels at cell level?
I am going to assume ..No However, if you have research please share.
How did Dr Wahls REVERSE her symptoms without B12 injections or using amino acid supplements? How did fecal transplant stop MS progression in another patient? When MS patients that go through bone marrow surgery, then radiation to kill immune system and then bone marrow readded...why do the ones that survive this procedure have no further progression of disease? They were not on any amino acid or enzyme therapy.
I don't see how Phylenalanine was used in any of these cases, but I guess I should say you are right Triad.
Great ,according to you, all people with MS can take Phyleananine and MS is cured. AWESOME. I guess in a few months once everyone has taken this amino acid we can take down this board.
Sarcasm aside, I would LOVE if you were right Triad. Truly and with all my heart I would owe you a great big hug if you could find root cause. I WANT a cure for my husband.
I appreciate your research and debate but, like I said in previous reply, my hubby did use this amino acid for three months and seen no improvement. Maybe it will help some ...time will tell. I do think MS is a metabolism /absorption issue with different subset of root cause. I think this research is going in the right direction. However, we need more data and better tests for finding out exactly what metabolism issues are contributing to disease process.
Please post research and what a person could test for to see if may apply to them. It is just disheartening to come out here and have someone say X is going to solve your problem when there is no research to support it is a cure. Nor any personal experience of this X fixing MS for you.
I advocate talking to your doc getting an amino acid test done at the very least . If you can find it a good fecal/serum test for pancreatic function. Then treat what you find are issues to you.
Good luck to everyone in working with your doctor to find and treat your specific issues,
EP
Triad~ "I don't think any of this needs to be so complicated. MS patients lack the essential amino acid phenylalanine, which is why they don't have enough thyroid hormones. (Phenylalanine>tyrosine>thyroid hormones)
All this from ONE missing essential amino acid-and MS patients lack numerous essential amino acids."
later you talk about breakdown but do not suggest any testing for amino acids or enzymes.
-------------------------------
So what you are suggesting is testing for DNase 1 and what specific proteases(there are a number of them)? Are there any good lab and specific tests for this?
Other issues can effect protein and therefore amino acid (AA) abosorption such as:
1. low stomach HCL and or pepsin (work together to degrade protein in stomach)
2. Low of secretin [reduces acidity of chyme (food) released from stomach] could interfere with protein degrade and absorption
3. low trypsinogen
4. GI microflora (bacteria good-bad ratio includes fungus & parasites)
5. GI integrity (addressing celiacs autoimmune reaction to gluten, avoiding food allergens and sensitivities and eating green veggies that activate T-beta to reduce inflammation)
Do you have any research on the above (other than Celiacs which is a known malabsorption issue) effecting absorption/metabolism in MS research?
Like I said in the past we have tried both AA alone and then later digestive enzymes. After 3 months a piece he did not see any changes positive or negative. If we do anything further I want to get testing.
But I can't follow EPagain's posts because I have MS and I am not a medical person. And I put Triad on "ignore" status because of of his/her studies were dubious to me. And again they were geared towards the non medical community and the non-MS community. Can't you understand that we can't (at least I can't) understand what you are talking about? Please form a sub group re research.
But re the diabetes: 1/3 of the American population is overweight or obese and that can be the reason for pre diabetes or diabetic. My nephew has diabetes type I and he is not overweight, in fact he is thin. It is not uncommon for relatives of people with MS having other relatives with auto immune diseases (which type I is).
But you refer to a MS "cure". There is no cure to MS. So I would not mislead anyone in saying that there is a cure. That is false. Please be careful when you say "cure" because that makes everything you say suspicious at least to me. I am ignoring Triad so I do not know what he/she is saying but I hope that he/she is not implying that. That is totally ridiculous.
But I would keep the posts relative to the topic and that is thyroids. I would talk to your neurologist and see what he/she says about the connection between MS and thyroids. They are the ones who know all their patient's medications and all their histories. So I would think that your neuro doc would know about a connection. Ask your neuro doc.
EPagain, I got Wahl's book and I don't believe some of it because of the part about the organ meat being a big part of the diet. Organ meat contains a lot of toxins in it. In fact 95% of meat is factory farmed and it contains a lot of hormones, anti biotics and so many unhealthy foods in it that I wouldn't trust any meat at this point, much less organ meat. Do you know that they are kept in a cage the size of a coffin their entire life and they are fed unbelievable diets. Their tails are cut off without painkillers, along with their gonads and their teeth. The whole thing is inhumane and unethical and I stopped eating meat. I believe in diet but not Wahl's diet. She could have relapsing and that has been selling "cures" for decades. I spent a ton of money in the 1990s going to an alternative place where they said that it could "cure" MS. But it was just a placebo. But I believe that a healthy diet is really important but not some of the false claims. You have to pick and choose. You are not going to cure MS with Phylenanine or whatever you and Triad are talking about these days.
Sorry for getting in conversation on a reply to Triad's topic. The last 2 replies I got off topic on my part. Please accept my apologies.
Ezone~
I can not speak for Triad or anyone else, just me. I brought up "normal ranges" on blood tests because they are based on 95% of the population. Most docs only treat the bottom and top 2.5% of the population, even though roughly 1/3 of population is diabetic/pre-diabetic and 1/3 have heart issue and 20% have autoimmune issue.
My point is that the majority of US population has health issues but we only treat 5%. I think we need to look at what research is telling us is healthy. So like in reply #8 when I brought up some docs may treat a low "normal range" with symptoms (docs refer to this as subclinical hypo..here thyroid) while other docs don't. This might be the reason Caroline is getting mixed signals on diagnosis.
In this context, it doesn't matter why they are in an unhealthy state of being diabetic or not. It is about the fact this is UNhealthy and I don't think they should be lumped into the "normal range" because we should want our "untreated norm range" to be one with healthy people. The unhealthy people should fall out of a number of these ranges and therefore treated.
As far as using the "cure" comment. The only time I used the word cure was in Reply #12. This was after I brought up multiple cases where phynelalanine was NOT used but people with MS reversed in symptoms or stopped progressing.
Then I said
"Great ,according to you, all people with MS can take Phyleananine and MS is cured. AWESOME. I guess in a few months once everyone has taken this amino acid we can take down this board.
SARCASM aside, I would LOVE if you were right Triad. Truly and with all my heart I would owe you a great big hug if you could find root cause. I WANT a cure for my husband.
I appreciate your research and debate BUT, like I said in previous reply, my hubby did use this amino acid for three months and seen no improvement. Maybe it will help some ...time will tell. I do think MS is a metabolism /absorption issue with different subset of root cause. I think this research is going in the right direction. HOWEVER, we NEED MORE DATA and better tests for finding out exactly what metabolism issues are contributing to disease process. "
So my point was this was NOT a cure ("C" word)...I am very careful about that too. It is too painful. Then Triad also stated (s)he did not think this was a cure either.
We do need more research because we have not found the "c" word yet.
Hope everyone has a wonderful day and like I said before. I wish Caroline luck in working with her doctors to find contributing causes and treating her symptoms.