Don't Get Your Thyroid Out...Ever. Leave It In Until It Kills You.

[ahmo]

I am getting conflicting messages. One woman said you will never do as well on T3 alone without T4. I hope that's not true. I was and am not a fan of T4.

I was on Synthroid (T4) much of my life. The first thing to shift my ME severity was getting off it. First I worked w/ GP and compounding chemist over a year or 2, trying different combos of dessicated thyroid, T3, T4. Not until I discovered the work of John Lowe, who linked FM to thyroid, and was a strong proponent of T3 only, did I really feel like I was on stable ground, instead of lurching from crisis to crisis.

Lowe died a couple years ago, and his site is N/A. But others now support T3 only. Also, from his inspiration, I stopped lab testing for thyroid levels/dosage. He recommends judging by symptoms only. (heart rate, ankle reflex, not sure what else). Now my GP no longer wants tests. When I asked him recently, whether it was time to test, he shrugged, confirmed that tests had never helped the treatment.

More recently I got good info from listening to Rudy Dragone re thyroid receptors. I'm adding in my list of sites I've found helpful.

Here’s an interesting and unique thyroid protocol.
http://recoveringwitht3.com/blog/what-circadian-t3-method

http://www.amymyersmd.com/2015/08/thyroid-health-part-vi-the-iodine-thyroid-connection/

5 Lies About Your Thyroid Disease That You’re Likely to Hear

http://thyroid.about.com/od/thyroidbasicsthyroid101/a/5lies.htm

Izabella Wentz, Pharmacologist http://www.thyroidpharmacist.com/

http://thyroidbook.com/ Datis Kharrazian

Several Hypothyroid vids, incl Dragone

http://www.thyroidscience.com/

Rudy Dragone, “Wilson’s T3 Thyroid Syndrome”
http://www.clarkspharmacyaz.com/health-professionals/

 

[ahmo]

Also, someone has shared info w/me re adrenals and Vit A.

Vitamin A is crucial to survival - true Vitamin A is required by the adrenals to produce hormones such as cortisol; it is also required by the body to prevent and defend against many viruses which may include those causing cancer; it is required to maintain the integrity of mucous membranes, the defenders at our body entry points through which food, disease and bodily fluids transfer; it is further required for vision; however, body reserves are often depleted due to disease and stress.

Search your own genetic data. Genetic SNPs identified as involving carotene conversion or non-conversion, can be found by querying snpedia for carotene:
http://www.snpedia.com/index.php?title=Special:Search&search=carotene&go=Go

Also, see:
Anderson—Stress-induced Adrenal Dysfunction Integrative Medicine • Vol. 7, No. 5 • Oct/Nov 2008p. 23 of Assessment and Nutraceutical Management of Stress-induced Adrenal Dysfunction by David C. Anderson, DC

...when a person is undergoing stress, adequate production of cortisol requires a variety of vitamins and minerals. A deficiency of any single nutrient can diminish conversion of cholesterol to cortisol (For a suggested nutritional protocol for adrenal stress, see Table 3).

Vitamin A (retinoic acid/retinol and carotenoid precursors), like vitamins C and E, is a potent antioxidant.79 It has also been shown to be essential in the production of steroid hormones.90

In rats fed a diet deficient in retinoic acid, the adrenal cortex showed considerable stunting and did not produce normal amounts of corticosteroids.91 Vitamin A is essential for conversion of pregnenolone into cortisol. Even mild deficiencies of vitamin A cause significant blunting of cortisol production.90 Research shows only retinoic acid or retinol to have a positive impact on adrenal health.90 However, research also shows that we should be cautious of vitamin A toxicity above 5000 IU/day.79 Therefore, a mixture of retinol/retinoic acid with mixed carotenoids would be preferred.

http://www.snpedia.com/index.php?title=Special:Search&search=carotene&go=Go

 

[Misfit Toy]

@ahmo -I am sorry to keep asking you questions. Did your heart rate go up and keep rising on T3? That is what mine is doing. I am hoping it's just the adrenals and not an adverse reaction to T3.

I saw my cardiologist today and he is a little worried. My heart rate is 105. My heart rate was pretty okay on NDT, but on T3 it moves.

Prior to the TT, it was 77 bpm.

I think I am going to just have to stay at where I am and work on the adrenals. It sucks because I feel awful, but that can be the adrenals.

Also, following Paul Robinson on FB for me, is a nightmare. He expects too much info. I do not take my bp but I know it's low. That is all I ever hear. I take my temp and my pulse, that's it. He wants so much info and he/they feel that 60 mcg for thyroidless women is fine and I am like ???? Um, okay. Maybe for those with thyroids that are still functioning to some degree.

Thanks for the info about vitamin A. I have it right here!

The amount of people who do horrible on synthroid is unreal. I can't believe how many on that med become so sick. It's scary. It scares the crap out of me and yet....I wonder if being on T4 would take the stress off of my heart since my heart feels it while being on T3.

 

[ahmo]

Yes, when my adrenals were weak, it was my heart that appeared to be the most limiting thing.

Maybe T4 would be fine for you. I don't know what factors make it help or not.

Here's another bit on Vit A. It looks to be a little too late for you. But might be worthwhile for deeper understanding.

http://thyroidnation.com/vitamina-important-thyroid-function/
"Vitamin A is required for activation of thyroid hormone receptors, and insufficient vitamin A may depress thyroid function. Animal models have shown that vitamin A deficiency interferes with thyroid health starting further upstream, in the pituitary gland. Vitamin A insufficiency increases pituitary synthesis and secretion of thyroid-stimulating hormone (TSH), increases the size of the thyroid gland, and reduces uptake of iodine by the thyroid gland.Vitamin A given alone, even in the absence of increased iodine, has demonstrated a positive impact on thyroid function and gland size. Vitamin A supplementation was shown to reduce serum TSH levels and increase T3 in premenopausal women (ages 17-50), including a cohort of obese women, who are at increased risk for subclinical hypothyroidism. Among children with goiter, living in areas where iodine deficiency disorders are prevalent, the greater the severity of vitamin A deficiency, the greater their thyroid gland volume and the higher their TSH levels. Compared to placebo, supplemental vitamin A significantly reduced median TSH and the rate of goiter. In rats with concurrent deficiencies in both iodine and vitamin A, vitamin A repletion alone was effective in reducing thyroid gland size and hyperstimulation."

 

[Paralee]

I'm on NP Thyroid, much better to do under your tongue than Armour. But I soak up T3 much more than T4 and my T3 was way higher than the T4, which I hear causes the pooling. Pooling is caused by the T3 being too high so Reverse T3 is made and it goes into the receptors of the T3 because the body thinks there's too much because the T4 is too low....because this is how a normal thyroid would work. Sorry if that was confusing.

I am thinking of going to Armour simply because my body takes up the T3 so fast. In the meantime I have gone down a little on my NP Thyroid and added some levo a couple of months ago. The levels look better, but not good enough. I will have to add more levo, I think. Everyone tells you that's not the way to do it but I found out some have to.

Also, I'm trying to find out if my cortisol is in a good range. It was high, now it seems to be dipping. Cyclic cortisol is not good. Cortisol and other adrenal hormones can keep your thyroid messed up. I'm trying to balance everything but it's a major job.

If I'm not mistaken besides adrenals iron can mess with your thyroid?

EDIT: My heart rate goes up with too much T3, not so much my BP.

 

[digital dog]

I think people who are ill find it very hard to balance their thyroid meds. It is all very well 'normal' people harping on about how amazing they felt when they got their thyroid meds sorted but for people like us it is a very different picture. I DREAD my thyroid packing up. I imagine it will do as it has been wonky for years and I have high antibodies and my mum and grandma were/are on thyroxine.
I have a bottle of Nature thyroid in my cupboard. I am very glad after reading about your experiences that I haven't tried it. Thyroxine made me so ill and loopy I had to go on antidepressants (which made me much sicker!)
I'm so sorry that you are suffering so dreadfully. I do know that if you are on any other drugs that these can mess up the bodies inability to tolerate thyroid medication. Makes sense as they are weakening the adrenals and liver (and God knows what else.)
I think if you take it very slowly you should be able to find a balance.
My personal opinion (which you can ignore obviously) is to leave trying the new herb (rhodiosa?) as you have enough going on. I tried all these adaptogen herbs and got significantly worse (although I react poorly to most things).
Good luck Misfit. I don't think the normal rules apply with us and you just need to take things very slowly and cautiously.

 

[frog_in_the_fog]

I think people who are ill find it very hard to balance their thyroid meds. It is all very well 'normal' people harping on about how amazing they felt when they got their thyroid meds sorted but for people like us it is a very different picture.

If only there was an easy way to monitor our thyroids, like it is easy for diabetics to monitor their blood sugar. The doctor complains if I test too often, and only orders the most basic test. Hard to dial it in when you you are expected to wait six months between tests, and then only have limited information to work with.

 

[digital dog]

Yes Yes Yes for-in-the-fog!

It would make life so much easier.

If this was predominately a male problem we would have just that.

I think it is so important to have regular tests as they can swing so widely in such a short amount of time. My TSH was 14 one week and 2 the next. My antibodies jumped down 100 points over two weeks!

I don't think doctors are getting clear enough results with just one test.

 

[Misfit Toy]

it can take a while,usually a few months to feel it working.

Are you talking about T3, or Synthroid or either one?

 

[Misfit Toy]

Hard to dial it in when you you are expected to wait six months between tests, and then only have limited information to work with.

That sucks. My doctor has me do them every 6 weeks, but just for now. Then I can hold off when I get to a better place. I am up on 75 mcg of T3 and feeling a bit better. But, don't hold your breath. We shall see.

 

[Paralee]

@Misfit Toy, 6 weeks is a Godsend, in a way. Most dr's don't know check that often, then if the levels are in range at all, that's good enough for them.

I mentioned I needed T4 because my body is absolutely giddy with T3. I just checked my husbands levels and his T4 is too high for his T3, so he's the opposite of me, it looks like he'll have to have some T3 to supplement his Armour.

 

[lizw118]

Hi everyone. I just wanted to share about when I was once on really high doses of T3 as well. I was also on adrenal cortisol meds, too. I had high reverse T3 and antibodies for hashimoto's (I still have those). The high T3 (I think I was at 75 mcg at some point) made my heart rate really high, too. I felt really trapped in a seemingly endless balancing act between supporting thyroid/adrenals and sex hormones (the T3 caused high SHBG). I still have my thyroid, though, so my experience is probably very different. Still i thought it might be helpful to share.
Over time, I slowly went off of the HC adrenal meds, which miraculously I was able to stay off of. I changed my diet, which really helped, taking out gluten and a lot of other stuff at the time. I did some other things to support my immune system. I tried naturethroid and it made my antibodies higher. Over time I was able to go way down on the T3. It was hard and I was worried I was damaging my body, but I didn't.

 

[Misfit Toy]

It's funny, but after I went up on the T3, my heart slowed down. Now at 75 mcg.

 

[Misfit Toy]

I needed T4 because my body is absolutely giddy with T3. I just checked my husbands levels and his T4 is too high f

When you say giddy, does that mean manic?

 

[Paralee]

@Misfit Toy , I just meant my system is really good at absorbing T3 compared to T4. Like there's probably a lot more receptors or something. I didn't mean it made me giddy, although I wouldn't mind it. :,)

Please excuse my typing errors, laptop down again and on my iPad. I'm not used to the different keyboard.

 

[Paralee]

Well, I had forgotten how mostly the liver does the T4 to T3 conversion, but there can be an absorption issue also in the gut according to one article. Now I'm confused again...as usual.

 

[Paralee]

@lizw118 , I'm repeating something I read so please take with a grain of salt. I read that when you first start taking natural desiccated thyroid your antibodies can go up for a while, but then drop back down and level out.

 

[Misfit Toy]

Update on the thyroid issue. Last week I wrote a post on how I feel I have become mentally ill. On a FB forum. I feel like I am in a fun house. I leave my apartment without my keys, I can never find or remember anything and I just feel nuts. But, I am exhausted. Totally exhausted.

I am lowering my T3 because the higher I went on it, I could not sleep and I was urinating all night long. Like every hour. So, I was like...okay, this can't happen. Plus, my appetite totally died.

I have been on T3 for 3 plus months. It has been difficult and full of ups and more downs. So, after nights of not sleeping and peeing all night long, I have decided to go back on T4 with T3 on the side. A combo.

I am living in constant grief. And I sit here alone never really telling anyone just how horrific this whole experience has been. If I could go back.....

I wonder what it is like to feel sane, or to look at one of my shirts and say...."Yes, that's my shirt."

DEPERSONALIZATION.

And...who knows if the T4 will even work or any of this will be okay. I have no idea. Because of my other illnesses, I may have forever castrated myself and that's it.

 

[Kati]

I am so sorry things are so hard @Misfit Toy. Have you discussed your new symptoms with the physicians that monitors your thyroid? Sending hugs.

 

[TigerLilea]

Misfit, go back and talk to your endo. There must be something he or she can do to help you.