Still experiencing symptoms

LadyBoss_1989

I have been on levothyroxine since I was about 14 yrs old, after my mom noticing my goiter was very enlarged. I'am 25 now since than never had any problems with enlargement there BUT I'm still having all of the symptoms. As a matter of fact, there has been a period of time, 6 months or more when I was completely OFF my meds and never felt worse or better. It makes me feel like the medicine is having a zero effect on me at all, even though blood work shows everything is good. My hair falls out really bad, i'm always very cold even in warmer temps, always hungry, very slow metabolism I gain all my weight im my stomach. even though i have been successful at losing weight, my stomach is still there. I look and feel bloated all the time, but my biggest number one complaint is how tired iam. My father is old and has breathing problems and i swear, has more energy than me. and It's more of a lazy just wanna sit tired, than it is sleeping. I actually can be extremely tired but not fall asleep at all. Upping my dose doesn;'t help and I have even added Cytomel, and that did nothing but kinda made me feel more tired if anything with a headache. My endo doesn't know what else to do but switch my meds. Advice???

editorgrrl

If you're already taking Synthroid + Cytomel, you could either try other brands of those two drugs, or switch to Armour, which is desiccated pig (or pig + cow) thyroid glands. You'll find plenty of stories in this group of people who feel much better on Armour.

Do not give up! It'll take trial & error to find what works for you.

LadyBoss_1989

I have an appointment with my endo tommorrow. Shes hestiant to put me in Armour because it makes your heart race. I also tried cytomel for a few days and stopped bc it wasn't making me feel good.

editorgrrl

As I said, trial & error.

It took me a year & a half to persuade my endocrinologist to add Cytomel—even though my T3 was really low. It made me feel anxious at first, but that wore off in a week or so. Now I feel much better than on just Synthroid.

LadyBoss_1989

My t3 was already good prior to cytomel. that is probably why it made me feel werid taking it, i didnt need it.

lindsey1979

I don't think the natural thyroid options (Armour, Nature-throid) should make your heart race any more than synthroid/cytomel will -- that's the effect of too much thyroid medication, regardless of the source (unless you have some other underlying condition). The traditional complaint of Armour/Nature-throid is that it isn't as precise as the synthetics. But, that's mostly an argument that is no longer valid since the difference in precision these days is negligible.

Absent any other issue, it sounds like you're still very much hypo. Do you have Hashis? I ask because when you have Hashi's, the levels of the blood tests need to be interpreted a little differently. When you have the antibodies that block your thyroid hormones like you do with Hashi's, it's literally impossible to know how much of the hormones the antibodies are blocking -- they could be block 10% of your active hormones or 90%.

So, practitioners are supposed to look at BOTH the levels and symptoms (sadly, too many ignore the symptoms) since you can still easily be in the range of "normal" but still experience horrible hypo symptoms -- because some of those hormone levels are being rendered ineffective due to the anitbodies. For example, I still experience terrible hypo symptoms when I'm in the low normal part of the range. My doc has to take me up to the upper third of the normal range until my hypo symptoms disappear for the most part. But, sadly, some docs won't treat so long as you're in the "normal" range of the gross numbers, even with Hashi's and terrible hypo symptoms. Those folks just have to find a doc who truly understands Hashi's and will treat clinically as well as to the blood tests.

editorgrrl

lindsey1979 wrote: »

Do you have Hashis? I ask because when you have Hashi's, the levels of the blood tests need to be interpreted a little differently. When you have the antibodies that block your thyroid hormones like you do with Hashi's, it's literally impossible to know how much of the hormones the antibodies are blocking -- they could be block 10% of your active hormones or 90%.

That's not the way my endocrinologist explained it to me. I have Hashimoto's (autoimmune thyroid disease), which means your body is attacking your thyroid. The thyroid responds to the attacks by producing varying amounts of hormones. So sometimes you have too much, and other times not enough.

Which is why your endo should be checking your levels regularly and adjusting your meds accordingly.

lindsey1979

editorgrrl wrote: »

lindsey1979 wrote: »

Do you have Hashis? I ask because when you have Hashi's, the levels of the blood tests need to be interpreted a little differently. When you have the antibodies that block your thyroid hormones like you do with Hashi's, it's literally impossible to know how much of the hormones the antibodies are blocking -- they could be block 10% of your active hormones or 90%.

That's not the way my endocrinologist explained it to me. I have Hashimoto's (autoimmune thyroid disease), which means your body is attacking your thyroid. The thyroid responds to the attacks by producing varying amounts of hormones. So sometimes you have too much, and other times not enough.

Which is why your endo should be checking your levels regularly and adjusting your meds accordingly.

What do you think it's attacking your thyroid with? You body is having an immune response to your own tissue -- your thyroid -- as if it were a foreign body like a bacterium or virus. That's why it's called an autoimmune response.

Why do you think they check TPO and Tg antibodies and they're text book markers for Hashimotos? What do you think antibodies do?

They're created by lymphocytes and start the immune response. They bind with substrates (like bacteria, virus or your own thyroid hormones) to be destroyed by the lymphocytes for removal from the body -- just like you'd see in a cold, except they'd be attacking the cells infected with the virus so it can't replicate anymore.

Here's more detail:

--- anti-TG antibodies, which attack a protein in the thyroid called thyroglobulin
--- anti-thyroperoxidase (TPO) antibodies, which attack an enzyme called thyroperoxidase in thyroid cells that helps convert T4 to T3. Having TPO autoantibodies in the blood means the body’s immune system attacked the thyroid tissue in the past.
--- Most people with Hashimoto’s disease have these antibodies, although people whose hypothyroidism is caused by other conditions do not.

http://www.endocrine.niddk.nih.gov/pubs/hashimoto/

LadyBoss_1989

Yes I do have hashis. Pretty much want to know if it would be a good idea or bad one to try a different thyroid med??

allergictodiets

"Why do you think they check TPO and Tg antibodies and they're text book markers for Hashimotos? What do you think antibodies do?"

You can have Hashi and do not have those markers elevated. I was diagnosed based on a scan.

lindsey1979

allergictodiets wrote: »

"Why do you think they check TPO and Tg antibodies and they're text book markers for Hashimotos? What do you think antibodies do?"

You can have Hashi and do not have those markers elevated. I was diagnosed based on a scan.

True, true, but that's much less common.

lindsey1979

LadyBoss_1989 wrote: »

Yes I do have hashis. Pretty much want to know if it would be a good idea or bad one to try a different thyroid med??

From what I've seen, it likely couldn't hurt you. Some people just fare better on the naturals but there doesn't seem to be a clear reason why yet. I've known many people that started on the synthetics and switched to Armour or Nature-throid and for whatever reason it worked better for them. Others notice no difference. I haven't heard of anyone doing worse, but I'm sure that's a possibility too. The upside of the naturals is that they've been around for a very LONG time -- so trying likely is not going to do anything terrible for you. Worse case, you go go back to the synthetics. Talk to your doctors about it and see if he/she is open to the naturals -- some are but many aren't.

Fuzzipeg

If a person is put on the natural thyroid replacement they are getting T1, T2, T3 and T4. These are in proper balance for the majority because they come from animals with similar hormonal needs to our own and there is still so much ignorance about this formulation because it is often in the best interest of the pharmaceutical companies to supply the artificial kind as well as denying some people can improve their symptoms by ensuring they are having an adequate diet. For the last 50 years we have been inundated with poor health advice, milk and all dairy, eggs, some salt and more are bad for us where in fact we need these as part of our right nutrition which why just any old calorie in will do as long as it is at a deficit.

I have not discovered the origin of T1, T2 is made in the ovaries, T3 is the active form of the hormone which is made by our bodies from the available T4 and several minerals including selenium. Selenium had been proven to also reduce the activity of the antibodies for many. This information is out there on medical sites. Even the person who first designed the thyroid testing is/was of the opinion his work was being hijacked not being used in the manor he intended.

It is true that a person changing from synthetic to natural or the reverse needs close monitoring because the additional T1and T2 as well as the proper balance of T3 and 4 in the natural version is impossible to replicate in the synthetic form. You are unable to say this amount of this will work as that amount of that because our bodies are actually individual and the problems set up by a badly functioning thyroid respond to treatment in the most individual ways.

I do not believe there should a pill for every ill. I vote for proper nutrition first, then the medicine. Doing what is right for yourself

editorgrrl

LadyBoss_1989 wrote: »

Yes I do have hashis. Pretty much want to know if it would be a good idea or bad one to try a different thyroid med??

Thyroid meds (just like weight loss) take a whole lot of trial & error to find what works for you. Your basic options are Synthroid, Synthroid + Cytomel, or Armour.

Only you can decide if how you feel right now is good enough. And if you try something else but don't like it, you can always go back—or try something else.

lindsey1979

editorgrrl wrote: »

LadyBoss_1989 wrote: »

Yes I do have hashis. Pretty much want to know if it would be a good idea or bad one to try a different thyroid med??

Thyroid meds (just like weight loss) take a whole lot of trial & error to find what works for you. Your basic options are Synthroid, Synthroid + Cytomel, or Armour.

Only you can decide if how you feel right now is good enough. And if you try something else but don't like it, you can always go back—or try something else.

You also have the option of Nature-throid (which is similar to Armour) -- both are natural dessicated thyroid from either pig or cow, or some combination of pig/cow (I can't remember off the top of my head which is which).

But, it's possible that there may be other issues interfering with your thyroid meds or producing similar symptoms -- such as low DHEA levels, deficiencies in Vitamin D, Magnesium, Iodine, Selenium, etc., blood sugar issues like insulin resistance, etc. They can all impact the thyroid or produce similar effects like fatigue and difficulty losing/maintaining weight or unexplained weight gain.

For example, if your adrenals are off (DHEA, cortisol, etc.), you can actually feel worse when you start thyroid medication. That's why docs are supposed to check for adequate levels there first before starting thyroid medication, but many fail to do so.

LadyBoss_1989

Coristol was a little high but adrenals were good. I have not been tested for any other defiencies.

allergictodiets

I agree with @lindsey1979 - I feel much better when I supplement Vit. D & iron. Oh and I eat 1 brasil nut a day for selenium ( supplements are way too expensive ). Unfortunately no doctor here is willing to check my DHEA and cortisol levels :-(

lindsey1979

The docs really should be checking the DHEA levels. If you really want to, you can get them checked yourself through a private provider like MyMedLab. It's not all that expensive in the US ($100 or so for both DHEA and cortisol -- and you can submit it to your insurance company for reimbursement).

I actually had some tests done there and then when they came back, went head-to-head with my then doc over diagnosis and treatment (she initially wouldn't do certain tests either and really had to eat crow when my Free T3 came back so hypo). Since then, I've moved to a thyroid specialist that works closely with my GP. And to my GP's credit, she has been very open and interested in what he has ultimately taught her on thyroid.

I get my selenium through Amazon and it's pretty cheap -- $13 for 3 month supply of 200 mg caps (1 per day). Be careful of the Brazil nut things -- the amount of selenium can range greatly with them based on where they were grown, soil content, etc. That's why I go with the supplement.

http://www.amazon.com/gp/product/B002FJY3H0/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

shadesofidaho

The Armour ,Levo/Syhthroid make my heart race. When I switched to the NP my pulse went back into the 70's from high 80's to 90's. This is good for me. Sheese I sound like an advertisement for NP. I am not affiliated in anyway. Some one on another board talked about it so I read up on it online.