Hypothyroidism - What works for you? (sorry..long!)

[chammer]

I imagine there are several here dealing with this issue and thought this a great place to share what has and hasn't worked to optimize your health and energy while hypothyroid.

I was dx Hashimoto's hypoT about a year and a half ago and it has been a LONG slow road to getting my energy and well being to match the "within normal limits" that my labs reflected....but I've learned a LOT and am feeling the best I've felt in years.

At times it was literally an energy roller coaster - I would go through periods of feeling good - about 75% of normal - would start working out regularly again (not overdoing it) and within 3 - 4 weeks would just crash (for lack of a better word)... back to barely functional get-through-my-workday kind of energy levels, terrible workout recovery (doms lasting 5 days and completely depleting my energy), etc... NOT fun.

Here's the short list of what has most helped me:

1. having a Dr. who is willing to fine tune my treatment based on my symptoms and not just my labs - this was a must. For me this meant going to an out of network Dr. but it's worth the added cost...WAYYY worth it

2. learning to absolutely AVOID calcium, fiber, vitamins, etc. for at least four hours from my thyroid meds. This means even green smoothies (which took me a while to connect that a couple weeks of green smoothies and I was feeling worse and worse - hello spinach's bioavailable calcium, and goitrogenic kale, errrm fiber anyone.... oops hard to connect that such a healthy choice could contribute to feeling sooo bad)

3. the final biggie for me was adding T3 to my synthroid at the recommendation of a hypoT friend (and willingness of my Dr.). Compounded natural T3/T4 did not work as well for me. Within two weeks of T3 + synthroid, I experienced not only an uptick in energy but also the missing ingredient - for me - to exercise recovery. Now, despite being back to 5 - 6 workouts/week, my muscle weakness is gone (hooray!) and soreness and recovery is finally normal again.

Of course we all have to uncover what works best for us individually, so I'm just offering up what I've learned through much trial and error. I know some of this is obvious and stated time and again in the what to do/not do if your hypoT, but I was a slow learner in some ways and maybe my mistakes will help someone else avoid those pitfalls

Any other tips/pointers you've learned on this journey ? Would love to hear!

 

[MidgetDogg]

Wow - I guess I have it pretty lucky. I was put on synthroid back in 2004 and felt great almost immediately. There was a bit of fine tuning here and there, but for the most part, I've not had any additional problems. I'm supposed to get my blood tested every 6 months, but I always forget.

 

[Ivy]

I was diagnosed with hyperthyroidism years ago and had my thyroid radiated, I went into hypothyroidism and I too had the rollercoaster effect for a long time as well until I went to an out of network doctor as well. He was a lifechanger. He based his findings on how I was feeling and not just my labs. More and more doctors are realizing that they cannot go on labs alone, I hope it becomes more universal.

 

[amybajamy]

Here's the short list of what has most helped me:

1. having a Dr. who is willing to fine tune my treatment based on my symptoms and not just my labs - this was a must. For me this meant going to an out of network Dr. but it's worth the added cost...WAYYY worth it

2. learning to absolutely AVOID calcium, fiber, vitamins, etc. for at least four hours from my thyroid meds. This means even green smoothies (which took me a while to connect that a couple weeks of green smoothies and I was feeling worse and worse - hello spinach's bioavailable calcium, and goitrogenic kale, errrm fiber anyone.... oops hard to connect that such a healthy choice could contribute to feeling sooo bad)

3. the final biggie for me was adding T3 to my synthroid at the recommendation of a hypoT friend (and willingness of my Dr.). Compounded natural T3/T4 did not work as well for me. Within two weeks of T3 + synthroid, I experienced not only an uptick in energy but also the missing ingredient - for me - to exercise recovery. Now, despite being back to 5 - 6 workouts/week, my muscle weakness is gone (hooray!) and soreness and recovery is finally normal again.

So when do you take your synthroid? I usually end up eating cereal and milk anywhere from one to three hours after I take mine.

Hmmm...I wonder where one might find an open-minded doctor like that? That does not sound easy. I felt a lot better when I first went on synthroid in 2002 and have mostly felt good, but a couple of times I've needed my dose adjusted. My labs have been good now for about 2 years, but for the last 6 months or so I've been so tired. No energy or motivation to do anything beyond the minimum, haven't worked out in 6 months and have gained back the 20 pounds I lost last year plus 10 more. I wonder if it's my thyroid? How did you find your doctor?

 

[kkvls2004]

I was diagnosed hypothyroid a good 8+ years ago, around the same time I went into early menopause due to what they think is OFS. There has been a lot of tweaking over the years - hormone replacement plus levothyroxine. I too had really debilitating fatigue and still have problems with exercise recovery.

What helped my daily energy level the most was getting tested for vitamin D levels and learning I was chronically very, very low. I have to take a lot of vitamin D to keep my levels in the normal range - like 10,000 IU several times a week - but that has been the single biggest factor in me recovering a "human" level of energy.

It might also be worthwhile getting your testosterone level tested - women do need a measure of testosterone, just much less than men. The first time I was tested I had a zero testosterone level, so my doctor prescribed a cream supplement for about 4 months. It must have acted as a "jump start" - my body began making it again and my labs started showing high, so she took me off it and I have maintained normal labs for this since.

I also use green smoothies and powders, and have moved my diet to a higher % of plant based, nonprocessed foods. I felt I got some good results doing cleanses (esp. liver) and colonics, but those aren't for everyone. I haven't felt the need to repeat those for several years now that my overall diet is better and I keep my fruit/veg fiber intake high.

HTH and good luck!

 

[rmrmr]

chammer-have you tried taking your meds at night, that way you don't have to worry about food interferring with the meds. I was diagnosed as hypothyroid about almost 15 yrs ago. Although it took a while to get the meds dosage right, taking it in the evening has really helped. I also follow a high fiber diet and drink plent of water. Good Luck.

 

[acarolinagurl]

I'm also on Synthroid, but I've found that it interfers with my sleep. Has anyone else had this happen to them? I've had to go on and off of it. I've kept my doctor in the loop too, so he knows what I'm doing. I have my blood levels checked every 2 months. He has me on .25 right now, I can't take any doesage over .50. I haven't tried the Cytomel, my doc seems to think that may be too much for me, if I can't tolerate the low does of Synthroid. I wonder if I take it at night would it help me feel more energy during the day? I think I'll ask my doctor about taking it that way. Maybe it will do the opposite of what it does when I take it first thing in the a.m.

 

[chammer]

The Dr. I found who treats via symptoms AND labs is a bio-identical hormone/"vitality" specialist that friends have experienced good results with - I originally went to her just wanting to optimize my health/vitamins/etc... but by the time I got the lab results back (three months later... I kind of took my time because I thought I was just "optimizing" originally!) indicating thyroid, I knew something was off.

She also tested my vitamin D (and all vitamin and hormone levels), and yes, it was wayyy low (bordering on "deficient" not just insufficient). Since supplementing regularly/consistently with 5000IU over six months I brought my levels back to optimal and I experience notably less aches and pains that I originally attributed to thyroid.

T3 has been the ONLY thing to improve/nearly correct the exercise recovery issue I was having... I'm on the tiniest initial dose - 5mcg and it's helped tremendously. For me, it was definitely worth the experiment!

Tricky figuring out what's what with all these overlaping symptoms - T3, VitD, Synthroid, blablabla

Yes! I've heard several people have had good luck taking Synthroid at night - may have to try that. Though the Cytomel (T3) will still need to be in the a.m. since it's fast acting.

Tricky balancing all these supplements and mealtimes, etc... too! I'm not getting everything in as well as I used to, but I feel better, so I'm trying to not obsess over it

Thanks for all the tips and input!