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  AHSTA  Investigating L...  LDN Users and W...  jannz 303 days on LDN Update
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New Post 12/26/2008 2:32 PM
User is offline jannz
144 posts
10th Level Poster




jannz 303 days on LDN Update  
Modified By jannz  on 12/26/2008 12:32:53 PM)

Hi Everybody,

OK -- 303 days on LDN.   My last test cycle was 10/30/08.  The biggest change I made in this test cycle was that I switched my LDN daytime dosing to NIGHT-TIME dosing.  

I've been using my TPO and ANA antibody levels as the 'measurable indicator' of the effectiveness of LDN therapy.  Right or wrong --  it's the only trackable indicator that I know of to use.  Well, this testing round had both my ANA and TPO  HIGHER than the previous testing round!!   Ugh!   I wasn't expecting that. 

I realize that there are lots of variables involved in antibody production, so I feel pretty confident that the increase in antibodies was NOT the result of switching my LDN  dosing schedule...however, it is curious.  

Something else I need to consider is that this testing round I was NOT as consistent about taking extra niacin and extra selenium...which I had been taking more consistently in previous testing rounds....so that may be a factor.  However, before I took ANY extra niacin or selenium I was experiencing a drop in my antibodies... so geeeeez ~who knows ??  

Another test that I was curious to know the results was my '25, hydroxy vitamin D' -- I'm at 49...despite taking 5000iu D3 for almost the entire year.  My goal is to have my vitamin D much higher at around 80 so I will be upping my dose of D3 to 10,000iu -- perhaps just on M-W-F.

ANYWAYS...that's my update.  Click the link below for my lab results.

Best wishes,

Jann

BTW:  I think I will stay with night-time dosing for awhile longer even though my antibodies are higher this test round.   I like waking up to that well-being feeling  / more energy  -- it just feels more pronounced in the morning  rather than having it later in the afternoon which is when I would experience it when I was using day-time dosing.  

I had decided to try the night-time dosing again -- just to see if after being on day-time dosing for so long if I would experience the same sleep disturbance that I had before.   I had a few nights of waking up at 2am or so -- despite taking almost 10mg of melatonin and some Benedryl -- but that was about it.    I did NOT take that much melatonin when I first tried LDN so maybe it would have helped back then...???.... or maybe being on LDN for so long made the switch much easier...????   ~who knows. 

 

 

 


Autoimmune disease presenting as:

Vitiligo: 1987 ~ Hashi's: 1996 ? ~ Sjogrens: 2003 ?

View my lab results

View my supplements list
 
New Post 12/27/2008 12:18 PM
User is offline Valerie
472 posts
7th Level Poster




Re: jannz 303 days on LDN Update  

Hi Jann,

I'm sorry to hear that your TPOAb and ANA levels didn't decrease further. The jury is out on LDN in thyroid disease and without a study, we are merely anecdotal. There could've been any number of other reasons for inflammation (increase in TPOAb), from diet to seasonal triggers (example, at the end of Fall and start of Winter I tend to "flare" from Ragweed and Cedar) or even adding or eliminating certain supplements, as you've suggested. Nevertheless, it's somewhat a disappointing result, though compensated by an overall improvement in your energy levels. I'm doubtful it is the time of day you are taking it. Your description of when you feel energetic seems tied to the 4-6 hour release of endorphins post-medication.

Regarding Vitamin D, I have heard that it's not a bad idea to take up to 10,000 IU until your levels normalize, then drop down to 2000 IU to 5000 IU as a maintenance dose of Vitamin D. Maybe that will work for you. I know that I'm much more vulnerable not taking daily Vitamin D, case in point yesterday foregoing it and then not feeling all that great in the morning. I'm now a firm believer in the value of Vitamin D when below or low in range. BTW, correct me if I'm wrong, but that seems like a hefty dose of melatonin. The dosing is somewhat controversial, with some adamant about not taking more than 3 mg. 

The real question is, would you prefer life with or without LDN?

V.


Meow!—Valerie
DX Grave's disease and Grave's ophthalmology 2003
Positive for TSH-Receptor and TPO antibody
Thyroid Drugs: Methimazole (MMI) 3.75 mg
My Labs (click here)
My Supplements (click here)
 
New Post 12/28/2008 9:56 AM
User is offline jannz
144 posts
10th Level Poster




Re: jannz 303 days on LDN Update  

Hi Val,

 RE: BTW, correct me if I'm wrong, but that seems like a hefty dose of melatonin. The dosing is somewhat controversial, with some adamant about not taking more than 3 mg.

Yes...that's a high dose.  I wouldn't take that much on an ongoing basis and the only reason why I took that much at all was because my DIL doctor said it was OK for her to take that much for a few days.

RE: The real question is, would you prefer life with or without LDN?

Right now I feel pretty good -- so I wouldn't want to change too much of what I'm doing at this time.   Do I feel good because of LDN..??...Is it because I'm sleeping better..??... Is it because I've got my nutrition / supplements figured out ..???....  Is it because "D:  All of the above...??...

However, I do feel like there will come a point where I need to evaluate whether taking  [what is probably considered ]  a 'non-essential' drug to feel good aligns with my principals / value system.   This thought does occur to me at times.

Best wishes,

Jann


Autoimmune disease presenting as:

Vitiligo: 1987 ~ Hashi's: 1996 ? ~ Sjogrens: 2003 ?

View my lab results

View my supplements list
 
New Post 12/28/2008 11:38 AM
User is offline Valerie
472 posts
7th Level Poster




Re: jannz 303 days on LDN Update  

Hi Jann,

Yes...that's a high dose.  I wouldn't take that much on an ongoing basis and the only reason why I took that much at all was because my DIL doctor said it was OK for her to take that much for a few days.

I'm sure a few days won't kill you. I don't take melatonin, but have thought about adding 1 mg at night. 

Right now I feel pretty good -- so I wouldn't want to change too much of what I'm doing at this time.   Do I feel good because of LDN..??...Is it because I'm sleeping better..??... Is it because I've got my nutrition / supplements figured out ..???....  Is it because "D:  All of the above...??...However, I do feel like there will come a point where I need to evaluate whether taking  [what is probably considered ]  a 'non-essential' drug to feel good aligns with my principals / value system.   This thought does occur to me at times.

True, given all the sundry supplements, replacement hormone and drugs, it's difficult to know which of those is working or which are just along for the ride. You'd need to isolate each variable or combination of variables. I can relate to what you are saying because if you're anything like me (I'm guessing we are like-minded here), you don't want to dampen down discomfort without addressing the cause or knowing which treatment is truly working. You want bigger solutions, not patchwork.

Nevertheless, if LDN makes you feel better, I think that has merit. Isn't the goal to suffer less or not at all? After looking at my tests for thyroid hormone, TSH, Vitamin D, Serotonin (and those are the ones I know about, not the ones I don't know about), I would not be surprised if even my endorphins are off-kilter, too. At some point, one has to cease being stoic and and attempt to live a life with as little suffering as possible.


Meow!—Valerie
DX Grave's disease and Grave's ophthalmology 2003
Positive for TSH-Receptor and TPO antibody
Thyroid Drugs: Methimazole (MMI) 3.75 mg
My Labs (click here)
My Supplements (click here)
 
New Post 12/28/2008 12:54 PM
User is offline jannz
144 posts
10th Level Poster




Re: jannz 303 days on LDN Update  

RE: Nevertheless, if LDN makes you feel better, I think that has merit. Isn't the goal to suffer less or not at all?  ....At some point, one has to cease being stoic and and attempt to live a life with as little suffering as possible.

Yes...this is true....who wants to suffer.    That's what a lot of folks that get addicted to drugs are after -- an escape of some sort.  However LDN is NOT an illegal drug and causes no harm that I'm aware of.   I do wish there was a better method of determining it's effectiveness.  ie; a blood test that determines homeostasis or ~whatever.  

I'll be seeing my doctor this week so I'll be asking her opinion based on my experience thus far.

Jann

 


Autoimmune disease presenting as:

Vitiligo: 1987 ~ Hashi's: 1996 ? ~ Sjogrens: 2003 ?

View my lab results

View my supplements list
 
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