Re: new to group - LDN & Hashi's

[Guest guest]

Hi, Amy,

I am new to the group too, though I've been reading the posts since about last July & started taking LDN Nov. 17, 2008 for Hashi's & chronic fatigue syndrome. I started at 1.5 mg for 7 wks., then 3 mg for 10 weeks, now on 4.5 about 2 wks.

Have you visited the thyroid group on about.com? they are very helpful in helping people find symptom relief. I've been on that list over 5 yrs. Do you get your "free T4" & "free T3" measured when you do labs? Have you had your ferritin checked? For hypothyroids and hashis ferritin should be above 50 to help with fatigue and hair loss. (Mine was only 30 when I first had it checked.) Free T4 and Free T3 should be in the upper half of the range. You can find out more about this on thyroid forum at about.com.

Best,

Connie

[Guest guest]

Hi Connie,

Lovely to meet you.

This group is wonderful for sharing information that could help others.

I have a couple of questions about the treatment schedule - hope you don't

mind.

The dose escalation schedule was 1.5mg x 7 weeks, 3mg x 10 weeks, 4.5mg x 2

weeks.

This equates to 19 weeks (which would take us up to the end of March 2009)?

As the period between Mon 17 Nov 2008 and this week, Mon 9 Feb 2009 was 12

weeks, maybe you started the LDN earlier and forgot or the periods between

each dose escalation were typos?

It would also be helpful for the group if you included the type and dose of

thyroid medication you were taking at time of commencing LDN, as well as

the details of a dose adjustment, if required (after starting LDN and up

until now).

Kind regards,

Cris

9. Re: new to group - LDN & Hashi's

Posted by: " Connie " chillyconconnie@... chillyconconnie

Date: Mon Feb 9, 2009 6:45 am ((PST))

Hi, Amy,

I am new to the group too, though I've been reading the posts since about

last July & started taking LDN Nov. 17, 2008 for Hashi's & chronic fatigue

syndrome. I started at 1.5 mg for 7 wks., then 3 mg for 10 weeks, now on

4.5 about 2 wks.

Have you visited the thyroid group on about.com? they are very helpful in

helping people find symptom relief. I've been on that list over 5 yrs. Do

you get your " free T4 " & " free T3 " measured when you do labs? Have you had

your ferritin checked? For hypothyroids and hashis ferritin should be

above 50 to help with fatigue and hair loss. (Mine was only 30 when I

first had it checked.) Free T4 and Free T3 should be in the upper half

of the range. You can find out more about this on thyroid forum at

about.com.

Best,

Connie

10a. Re: LDN & thyroid disease

Posted by: " Connie " chillyconconnie@... chillyconconnie

Date: Mon Feb 9, 2009 7:01 am ((PST))

Hi, Anne,

I am taking LDN for both Hashimoto's & chronic fatigue symdrome. I started

with 1.5 mg LDN Nov. 17, 2008. I noticed very little change in symptoms

and had no heart palps. When I told my LDN doctor (a neurologist) about

the risk of me going hyperthyroid on LDN, he was happy to put in standing

orders for me to have thyroid labs done every 2 wks. the first 2 months and

every month for the first year. That frequency was his idea. He had not

known the dangers of thyroid-disease people starting with 4.5 mg; he'd only

prescribed for MS in the past.

When I went to 3.0 mg after 3 weeks, I started having something similar to

hot flashes (only occasionally and not for very long). I also started

sleeping much deeper than I had in the past. I've been an insomniac all my

life so that was great. Plus, I've always had a problem with bladder

urgency at night since I was pregnant with my son 35 yrs. ago. On LDN that

urgency is getting very stabilized and I am only getting up about once a

night instead of 3, 4, or 5 times!

I then went up to 4.5 mg (after another thyroid test) and am sleeping even

better! (longer shifts and deeper sleep). While some on this list talk

about vivid dreams - I have the reverse experience. I used to dream all

night, vividly, and wake up feeling like I'd stayed up all night watching

movies - not a good feeling at 6:30 a.m. when you have to get up and go to

work. Since taking LDN, I am sleeping deep enough that I barely remember

my dreams, though I'm aware that I've had them, upon waking. To me, this

is a great benefit of LDN.

I am still experiencing my long-time fatigue, though I have days that are

better than usual. I hope that in time this will improve.

I do have records of my antibodies before LDN, so some day in the future

I'll get them tested again and see if they have gone down or not.

Do you have any questions specific to Hashis symptoms?

Best,

Connie

10b. Re: LDN & thyroid disease

Posted by: " Connie " chillyconconnie@... chillyconconnie

Date: Mon Feb 9, 2009 7:19 am ((PST))

Hi, Anne, I am taking LDN for both Hashimoto's & chronic fatigue

symdrome. I started with 1.5 mg LDN Nov. 17, 2008. I noticed very little

change in symptoms and had no heart palps. When I told my LDN doctor (a

neurologist) about the risk of me going hyperthyroid on LDN, he was happy

to put in standing orders for me to have thyroid labs done every 2 wks. the

first 2 months and every month for the first year. That frequency was his

idea. He had not known the dangers of thyroid-disease people starting with

4.5 mg; he'd only prescribed for MS in the past. When I went to 3..0 mg

after 3 weeks, I started having something similar to hot flashes (only

occasionally and not for very long). I also started sleeping much deeper

than I had in the past. I've been an insomniac all my life so that was

great. Plus, I've always had a problem with bladder urgency at night since

I was pregnant with my son 35 yrs. ago. On LDN that urgency is getting

very stabilized and I am only getting up about once a night instead of 3,

4, or 5 times! I then went up to 4.5 mg (after another thyroid test) and

am sleeping even better! (longer shifts and deeper sleep). While some on

this list talk about vivid dreams - I have the reverse experience. I used

to dream all night, vividly, and wake up feeling like I'd stayed up all

night watching movies - not a good feeling at 6:30 a.m. when you have to

get up and go to work. Since taking LDN, I am sleeping deep enough that I

barely remember my dreams, though I'm aware that I've had them, upon

waking. To me, this is a great benefit of LDN. I am still experiencing my

long-time fatigue, though I have days that are better than usual. I hope

that in time this will improve. I do have records of my antibodies before

LDN, so some day in the future I'll get them tested again and see if they

have gone down or not. Do you have any questions specific to Hashis

symptoms? Best, Connie