Better off than on thyroid meds?

[sleeplessinmedford]

I'm guy with Hashi's and I've got a bit of confusing situation with my levothyroxine meds. I've been on it for about 15 yrs, started at 65mcg, went up as high as 125mcg but am currently as 100mcg. The problem is I've had trouble with insomnia since I started, no matter the dose and the only way I can get any sleep is with doxylamine succinate and melatonin. What's really confusing is that about 3 months ago I took myself off the levo for about a month, started sleeping 8-9 hrs a nite and was feeling great, better than I had in years. Problem is, my TSH shot up to 90> and my doctor freaked when I told him I wasn't taking my meds. The levo is the only thing I take, so there was no possibility of any reactions with other meds, so it was all the levo that was causing insomnia. Anyway, my doc referred me to an endo and the endo said I probably had Hashimoto's disease, which I confirmed with an ultra-sound that showed the condition of my thyroid consistent with Hashi's. So it was back on the meds, but this time I requested Armour on the possibility that it might not cause a repeat of insomnia. Same thing, no change with the insomnia. Ins didn't cover the Armour so I went back to the levo. During all this, and since I then knew I had Hashi's I started researching it, which led to finding that the cause is now strongly suspected to be associated with food sensitivities, the biggest culprits being grains, specifically grains with gluten. Which led to finding that constant eating of these grains led to increased gut permeability (leaky gut) and autoimmune disease, of which Hashi's is one. So now I've been following the paleo diet geared for healing my gut. And yes, it does need healed. If fact within days of cutting all grains from my diet, stomach and gut pains I've had to years vanished. Plus I could eat foods I previously thought were causing the pains, like onions and avocados. But getting back to my original question, why should I even be taking levothyroxine if it causes insomnia, when if I don't take it I sleep far better and feel so much better. Wouldn't the lack of sleep cause more problems that the lack of peak thyroid function? I go back for tests in a couple weeks. Hopefully the AIP diet will make it possible to get off the meds or at least cut down to a point that I don't have to deal with insomnia anymore.

[goolarra]

Is your doctor testing anything besides TSH?  If so, please post your FT3 and FT4 results with reference ranges (they vary lab to lab and have to come from your own lab report) both off and on meds.

Whether the lack of sleep or lack of thyroid function is worse for you depends on how low your thyroid function is.  

No diet will allow you to get off meds if you have Hashi's.  The antibodies keep attacking your thyroid until there is no function left.  After 15 years, you probably have very little left.  

My guess is that your meds needed adjusting (insomnia is a symptom of overmedication), but cutting them out completely was too much of an adjustment.  Did you have hypo symptoms when your TSH was 90+?  

[gimel]

First thing to consider is whether you have ever been on a dosage adequate to raise your Free T4 and Free T3 levels high enough to relieve hypo symptoms, which can include insomnia.  It is not unusual for a hypo patient starting on thyroid med to find that their Free T4 and Free T3 don't actually increase, if at all, until their TSH is suppressed and serum thyroid levels are totally a result of thyroid meds.  From a very long list of symptoms that can be related to hypothyroidism, not this list of those that affect  energy level and sleep.

    Chronic fatigue
    Less stamina than others
    Long recovery period after any activity
    Inability to concentrate
    Sleep apnea
    Snoring
    Insomnia
    Need naps in the afternoon
    Weakness
    Wake feeling tired
    Frequently oversleep

There are reports that claim that gluten and a leaky gut result in antibodies that also attack the thyroid gland.  There has been no scientific studies to statistically prove that.  Success stories are anecdotal as far as we have seen.  Also, even if the elimination of gluten helped reduce antibodies and destruction of the thyroid gland, it would do nothing to offset prior destruction of the gland.  So thyroid med cannot be avoided.  

If you have been tested for Free T4, Free T3, Vitamin D and ferritin, please post results and their reference ranges shown on the lab report, so that we can better assess your status.  .