Not getting well on Synthroid/T4 medication-- it could be your genes

[Soror]

http://www.thyroiduk.org.uk/tuk/testing/Breakthrough%20Discovery%20-%20need%20for%20T3%20could%20be%20genetic%20Dr%20Gary%20Pepper.pdf

 

Some genes interfere with the bodies ability to convert T4(what the body usually makes) to T3(what the body uses). 

 

I'm currently struggling with conversion issues myself- even w/ natural T4 so I've switched to more T3, reading this makes me wonder is it genetic or something else(iron levels and adrenal status also effect conversion). *This could also be an issue even if your not on meds as your body makes T4 and if things are working right convert it to T3 for use for all the various systems in your body.

 

 

 

 

In May 2009 a group of researchers (Panicker, V. et al) in the UK published the WATTS study, the largest and most comprehensive study to date, of hypothyroid patients treated with combination t4 and t3. The goal of the study was to discover whether genetic differences in the population of hypothyroid patients accounts for some individuals needing t3 in addition to traditional t4 therapy. The researchers looked at 697 hypothyroid individuals and analyzed their DNA for differences in the portions controlling crucial enzymes which process thyroid hormones known as deiodinases. These enzymes are found widely distributed in the body including the thyroid, brain, muscle, liver, kidney and pituitary gland. As explained above, deiodinases convert t4 to the much stronger form of thyroid hormone, t3. At the same time the researchers measured patients’ mood and sense of well being on t4 alone and when t3 was added to the therapy.

 

Key findings of the WATTS study are that there is a substantial difference among individuals in the genes that make the deiodinases. In other words, due to genetic differences (mutations), there are differences in the way individuals make t3 out of t4. In a group of people, mutations in the genes that make a particular protein (in this case, the deiodinase), are called polymorphisms. The researchers discovered that a certain mutation in the deiodinase gene is associated with a poor sense of well being on t4 only therapy, and in the presence of this mutation a significantly better response to adding t3 can be found compared to those without this mutation. Of the group of hypothyroid patients studied in the UK about 16% possessed the faulty deiodinase gene. 

 

 

Edited May 6, 2016 by soror

[Soror]

Bump if you have Thyroid disease and aren't feeling well on Synthroid/Synthetic drugs take a look- !

[snickerplum]

That's a big drag. But thanks for posting. :-)

[Janeway]

Very interesting!!! I take Synthroid and wonder if this could apply to me.

[gardenmom5]

I still have low t3 - though we've brought up the t4 and tsh to near optimum.  (combo of levo and NDT. I feel better on both than just the levo.)  from what I have read, causes can be pretty complex - and that's if the dr admits it's real.

[Soror]

I still have low t3 - though we've brought up the t4 and tsh to near optimum.  (combo of levo and NDT. I feel better on both than just the levo.)  from what I have read, causes can be pretty complex - and that's if the dr admits it's real.

(I'm not an expert) but it sounds like you need t3/Cytomel. You also need your RT3 tested to see if that is where your body is converting your meds, RT3 blocks the T3-  It could be the genetic issue mentioned above or it could be low iron(you need the full iron panel- total iron, iron sat, TIBC and ferritin) or adrenal issues. If it is conversion problem adding in NDT or increasing it is not going to help because it is still mostly T4 and actually if your Rt3 is high you need to reduce both the NDT and Synthroid to clear that. 

 

 

 This study and subsequent others demonstrate that rT3 is a more potent inhibitor of T4 to T3 conversion than PTU (propylthio­uracil), which is a medication used to decrease thyroid function in hyperthyroidism. In fact, rT3 is 100 times more potent than PTU at reducing T4 to T3 conversion. Clearly, rT3 not just an inactive metabolite. The authors conclude, “Reverse t3 appeared to inhibit the conversion of t4 to T3 with a potency which is about 100 times more than PTU…â€

 

 

 

 

If you are on FB there is a great patient to patient help group there(full of ladies that really know their stuff- I thought I know about thyroid stuff- no those ladies are experts and I'm learning a ton and they have been a great help)- 

FTPO - Thyroid Topics (For Thyroid Patients Only)

 

You can also do your own testing. I have a dr that is pretty good but I'm at the point that I'd do my own tests if I couldn't get them done.  

As I said my problem right now is conversion my RT3 is way higher than it should be. Not sure if it is iron(they missed my iron tests on

my last orders- UGH! Or adrenals. I'm getting ready to retest the adrenals, as I have a feeling they have went downhill.

[gardenmom5]

 

(I'm not an expert) but it sounds like you need t3/Cytomel. You also need your RT3 tested to see if that is where your body is converting your meds, RT3 blocks the T3-  It could be the genetic issue mentioned above or it could be low iron(you need the full iron panel- total iron, iron sat, TIBC and ferritin) or adrenal issues. If it is conversion problem adding in NDT or increasing it is not going to help because it is still mostly T4 and actually if your Rt3 is high you need to reduce both the NDT and Synthroid to clear that. 

 

 

 

 

If you are on FB there is a great patient to patient help group there(full of ladies that really know their stuff- I thought I know about thyroid stuff- no those ladies are experts and I'm learning a ton and they have been a great help)- 

FTPO - Thyroid Topics (For Thyroid Patients Only)

 

You can also do your own testing. I have a dr that is pretty good but I'm at the point that I'd do my own tests if I couldn't get them done.  

As I said my problem right now is conversion my RT3 is way higher than it should be. Not sure if it is iron(they missed my iron tests on

my last orders- UGH! Or adrenals. I'm getting ready to retest the adrenals, as I have a feeling they have went downhill.

 

 

very helpful.   I have a check back with my dr next week.  I recently switched from an allopath to a ND - the ND has been much more proactive, but we are still in the "trying to figure things out" stage. 

[Soror]

very helpful.   I have a check back with my dr next week.  I recently switched from an allopath to a ND - the ND has been much more proactive, but we are still in the "trying to figure things out" stage. 

That sounds promising, hopefully you are on your way now, even if you know what you are doing it takes a while to get sorted. I've been seeing a Functional Med Dr. for 2 yrs and still am not optimal, my big thing is that I stayed on too low a dose for too long. I started to feel good and thought I was good but then I would crash- after being on a few rollercoasters I'm trying to figure out and address everything. Leave no stone unturned! I want to get good and stay good!!! I would encourage you to join the FB group before your appt so you have an idea of all the tests you need and what to advocate for.

[dtsmamtj]

Following this!!

[PrairieSong]

Thanks! I sent that article to a friend who is taking Synthroid but still having many problems. I don't know if it will help her but I figured it's worth a look.

[TammyinTN]

I got off Synthroid after 17 years and have been on Armour now for 2...huge difference.   Lost 45 pounds and I feel so different.

 

[Soror]

Thanks! I sent that article to a friend who is taking Synthroid but still having many problems. I don't know if it will help her but I figured it's worth a look.

I hope it is a help.

 

Really I think it is just a *part* of the reason why people don't do well on Synthroid BUT I hope this will open people's eyes to the fact that there is a different way. It could be the Synthroid is not working for her or many other reasons. OFten thyroid stuff is compounded by a lot of different stuff- when you are hypo it decreases your ability to absorb so you end up with low iron(which in turn messes w/ body's ability to utilize thyroid hormones- it is a vicious cycle), d, b's, etc. 90% of hypo people have Hashi's(which is often not tested) and then you have a greater chance of other auto-immune diseases. A sizeable amount of people advocate that those w/ Hashi's all need to be gluten free regardless of Celiac status. 

[Pawz4me]

I hope it is a help.

 

Really I think it is just a *part* of the reason why people don't do well on Synthroid BUT I hope this will open people's eyes to the fact that there is a different way. It could be the Synthroid is not working for her or many other reasons. OFten thyroid stuff is compounded by a lot of different stuff- when you are hypo it decreases your ability to absorb so you end up with low iron(which in turn messes w/ body's ability to utilize thyroid hormones- it is a vicious cycle), d, b's, etc. 90% of hypo people have Hashi's(which is often not tested) and then you have a greater chance of other auto-immune diseases. A sizeable amount of people advocate that those w/ Hashi's all need to be gluten free regardless of Celiac status. 

 

The bolded is what's driving me just a little bit nuts right now.  I'm dong very well on levothyroxine (thank goodness), but I'd really like to know for sure whether or not it's Hashi's.  So far a doctor and a PA (different practices) have told me they just assume it is Hashi's and that there's no need to test (because treatment is exactly the same whether it is or isn't) unless there's a complication or another auto-immune issue.  But there are other auto-immune things in my family, so I'd really like to know if having Hashi's just increases the chances even more that I may develop something else.

[Soror]

The bolded is what's driving me just a little bit nuts right now.  I'm dong very well on levothyroxine (thank goodness), but I'd really like to know for sure whether or not it's Hashi's.  So far a doctor and a PA (different practices) have told me they just assume it is Hashi's and that there's no need to test (because treatment is exactly the same whether it is or isn't) unless there's a complication or another auto-immune issue.  But there are other auto-immune things in my family, so I'd really like to know if having Hashi's just increases the chances even more that I may develop something else.

UGH! I would say it is likely you have it considering family history and the odds but like you I'd like to know for sure. Fwiw you can order the test yourself if you can't get them to order it. Although it is not that hard- they just really need to order the anti-TPO and TgAb antibody tests. Why dr's ignore this I'll never understand.

[myfunnybunch]

The bolded is what's driving me just a little bit nuts right now.  I'm dong very well on levothyroxine (thank goodness), but I'd really like to know for sure whether or not it's Hashi's.  So far a doctor and a PA (different practices) have told me they just assume it is Hashi's and that there's no need to test (because treatment is exactly the same whether it is or isn't) unless there's a complication or another auto-immune issue.  But there are other auto-immune things in my family, so I'd really like to know if having Hashi's just increases the chances even more that I may develop something else.

 

Both my endocrinologists (first retired, succeeded by a fabulous new guy) said that people with other autoimmune disorders are more likely to develop additional autoimmune disorders, including Hashimoto's; however, it doesn't seem to work the other way 'round. People with only Hashi's do not seem at greater risk of developing other autoimmune disorders.

 

Because this is tangentially related to the above, they also both, when asked, said to try going gluten-free, but that Hashimoto's itself doesn't necessarily respond to going gluten-free. Typically, it indicates that there's another issue at play, but the Hashimoto's is more easily diagnosed, so is often caught first.

 

 I'd gently insist on having the test done if you think it will make you feel better to know. The first thing my gp tested for after routine bloodwork came back with low thyroid (so low that she called me on a Saturday morning and told me to go to the pharmacy right now) was Hashimoto's. Both my current endocrinologist and my gp have close family members with thyroid issues, so they have a personal investment in staying on top of research. I get pretty good care on that end. I'm fortunate that I respond to levothyroxine pretty well.

 

ETA: And related to the genetic component mentioned in the OP, when my mother, who's been in thyroid meds for years, told her endo that I'd been diagnosed with Hashimoto's, he told her, "Well, you probably have it also, then," and offered to test. Since levothyroxine works fine for her also, she declined. But knowing that there's a genetic component might help your kids someday. I wish I'd known that my mom had similar symptoms after my sister was born. It might have saved me a couple years of counting the minutes until bedtime.

Edited May 7, 2016 by myfunnybunch

[Ellie]

The bolded is what's driving me just a little bit nuts right now.  I'm dong very well on levothyroxine (thank goodness), but I'd really like to know for sure whether or not it's Hashi's.  So far a doctor and a PA (different practices) have told me they just assume it is Hashi's and that there's no need to test (because treatment is exactly the same whether it is or isn't) unless there's a complication or another auto-immune issue.  But there are other auto-immune things in my family, so I'd really like to know if having Hashi's just increases the chances even more that I may develop something else.

 

Insist on these tests, because you should never assume anything.

 

 

Most people have more than one autoimmune disease. Some autoimmune diseases aren't awful, such as rosacea, or blepharitis, but they are still autoimmune. And the list of conditions which are being added to the autoimmune list is pretty big. You need to know.

[Soror]

Both my endocrinologists (first retired, succeeded by a fabulous new guy) said that people with other autoimmune disorders are more likely to develop additional autoimmune disorders, including Hashimoto's; however, it doesn't seem to work the other way 'round. People with only Hashi's do not seem at greater risk of developing other autoimmune disorders.

 

Because this is tangentially related to the above, they also both, when asked, said to try going gluten-free, but that Hashimoto's itself doesn't necessarily respond to going gluten-free. Typically, it indicates that there's another issue at play, but the Hashimoto's is more easily diagnosed, so is often caught first.

 

 I'd gently insist on having the test done if you think it will make you feel better to know. The first thing my gp tested for after routine bloodwork came back with low thyroid (so low that she called me on a Saturday morning and told me to go to the pharmacy right now) was Hashimoto's. Both my current endocrinologist and my gp have close family members with thyroid issues, so they have a personal investment in staying on top of research. I get pretty good care on that end. I'm fortunate that I respond to levothyroxine pretty well.

 

ETA: And related to the genetic component mentioned in the OP, when my mother, who's been in thyroid meds for years, told her endo that I'd been diagnosed with Hashimoto's, he told her, "Well, you probably have it also, then," and offered to test. Since levothyroxine works fine for her also, she declined. But knowing that there's a genetic component might help your kids someday. I wish I'd known that my mom had similar symptoms after my sister was born. It might have saved me a couple years of counting the minutes until bedtime.

Hmmm- I don't think the endo's are right from what I've read... Of course w/ AI diseases it is hard to tell what comes first.

 

My mom wasn't diagnosed w/ Hashimotos until after I was. My sister in law also has Hashiotos and her mom has an unspecified thyroid disease. My kids lost the genetic lottery to have it on both sides so strongly- and I have 3 girls. I actually had my youngest tested b/c she is so small but everything showed up good but I know I will certainly be on the look out for them and moving mountains to get it addressed if there are any symptoms at all.

 

Hashimoto's thyroiditis increases your risk of developing a number of autoimmune disorders. Some examples include:

• Addison's disease
• Graves' disease
• premature ovarian failure
• type 1 diabetes
• lupus erythematosus (a disorder that causes inflammation in a number of the body's systems, including the lungs and heart)
• pernicious anemia (a disorder that prevents the absorption of vitamin B12)
• rheumatoid arthritis
• thrombocytopenic purpura (a disorder that interferes with the blood's ability to clot)
• vitiligo (a disorder that produces white patches on the skin due to attacks on skin pigment cells)

 

Relative risks of almost all other autoimmune diseases in Graves' disease or Hashimoto's thyroiditis were significantly increased (>10 for pernicious anemia, systemic lupus erythematosus, Addison's disease, celiac disease, and vitiligo). There was relative "clustering" of Graves' disease in the index case with parental hyperthyroidism and of Hashimoto's thyroiditis in the index case with parental hypothyroidism. Relative risks for most other coexisting autoimmune disorders were markedly increased among parents of index cases.

Edited May 8, 2016 by soror