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Thyroid Mistreatment

bincongo

By bincongo
in Related Issues & Disorders

Recommended Posts

bincongo Contributor
bincongo
Posted

Ok someone directed me to a Web site called "Thyroid Mistreatment". I tryed reading it but right now it just put my mind in overload. My sister who has Hashimoto's told me to get Free T3 and Free T4 done in addition to the TSH. I am on Levothyroxine and have been on for a year. So my TSH is 2.58 in a scale of 0.27-4.20. My Free T3 is 2.7 on a scale of 2.6 to 4.4 so it is low. My free T4 is 1.12 on a scale of 0.8 to 1.70. Is it simple enough to just ask what I should be taking for the T3 in addition to Levothyroxine? Actually my doctor decided I could change to Synthyoid but I haven't yet.

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burdee Enthusiast
burdee
Posted

Ok someone directed me to a Web site called "Thyroid Mistreatment". I tryed reading it but right now it just put my mind in overload. My sister who has Hashimoto's told me to get Free T3 and Free T4 done in addition to the TSH. I am on Levothyroxine and have been on for a year. So my TSH is 2.58 in a scale of 0.27-4.20. My Free T3 is 2.7 on a scale of 2.6 to 4.4 so it is low. My free T4 is 1.12 on a scale of 0.8 to 1.70. Is it simple enough to just ask what I should be taking for the T3 in addition to Levothyroxine? Actually my doctor decided I could change to Synthyoid but I haven't yet.

With healthy thyroid function our bodies convert T4 to T3 as needed. A normal thyroid will make 80% T4 and 20% T3. So most docs will prescribe a T4 supplement or levothyroxine drug, like Synthroid, Levoxyl, Levothroid. Because I had years of undiagnosed celiac damage to my intestines plus 4 years of intestinal infections, my doc prescribed Levoxyl which is more easily absorbed by people with malabsorption problems.

If your T3 has not increased to a normal level after a year of levothyroxine (T4 supplement), you may need a T3 supplement like Cytomel (liothyronine) in addition to the Levo. Another option is a synthetic T4-T3 combo drug known as Liotrix or Thyrolar (brand name). I don't know why your doc would switch you to Synthroid, which is another T4 supplement, if the Levothyroxine (generic?) didn't work to increase your T3 levels. Did you have continued hypothyroid symptoms despite (while) taking the Levo? Sometimes one drug will simply work better than another (as I mentioned about Levoxyl for people with intestinal malabsorption problems). Did you ask your doc why he wanted to switch you to Synthroid?

cassP Contributor
cassP
Posted

OMG Burdee!!! can i take you with me to my PCP for my thyroid talk and testing???? seriously- i bet you could prescribe better that she could

im scared now. i felt a validation with the celiac dx- but i dont have to take a Pharmaceutical for celiac. i know i may very well have hypothyroid (my last TSH in 2006 was over 4.50)... and i dont really want to have to deal with daily meds with side effects or "fine tuning" :/

bincongo Contributor
bincongo
Posted
  • Author

With healthy thyroid function our bodies convert T4 to T3 as needed. A normal thyroid will make 80% T4 and 20% T3. So most docs will prescribe a T4 supplement or levothyroxine drug, like Synthroid, Levoxyl, Levothroid. Because I had years of undiagnosed celiac damage to my intestines plus 4 years of intestinal infections, my doc prescribed Levoxyl which is more easily absorbed by people with malabsorption problems.

If your T3 has not increased to a normal level after a year of levothyroxine (T4 supplement), you may need a T3 supplement like Cytomel (liothyronine) in addition to the Levo. Another option is a synthetic T4-T3 combo drug known as Liotrix or Thyrolar (brand name). I don't know why your doc would switch you to Synthroid, which is another T4 supplement, if the Levothyroxine (generic?) didn't work to increase your T3 levels. Did you have continued hypothyroid symptoms despite (while) taking the Levo? Sometimes one drug will simply work better than another (as I mentioned about Levoxyl for people with intestinal malabsorption problems). Did you ask your doc why he wanted to switch you to Synthroid?

Thanks, I was looking for this information. My doctor didn't say anything except to repeat the blood work. I wouldn't have even gotten a free T3 and T4 done if it had not been for my sister's suggestion. My sister doesn't have Celiac so she doesn't have to be concerned with malabsorbtion. My sister goes to a specialist for her Hashimoto's and autoimmune problems and he doesn't believe in using Levothyoxine. He puts her only on Synthroid so that is why I asked for it. I like my doctor but she may not know how to treat my thyroid problems.

I do feel a lot better after a year of taking Levothyroxine but I am not sure how "good" I should feel. I no longer have to take naps everyday. I still have problems getting to sleep at night. My concern was with possible absorbtion issues. I have had periods of time when I am just "wired" but that hasn't happened in a few weeks. I don't have a diagnosis of Hashimoto's but suspect it.

At this point would it be better to just add a T3 suppliment for awhile or ask to change to Levoxyl? I guess if it is malabsorbtion it might be better to go with the Levoxyl.

Skylark Collaborator
Skylark
Posted

For starters, you're not on enough T4. Your TSH should be suppressed to 0.5-1.0. TSH above 2.0 is absolutely unacceptable for someone on thyroid medicine. That's why everything is low and you're feeling tired.

It's healthier to be on only T4 (synthroid or levoxyl) but not everyone feels well that way. Oral T3 doesn't distribute it as well as your body naturally does, because different organs convert T4 differently. You end up high in some places and your T3 level fluctuates, which is harder on your bones. (It's worth the non-ideal T3 if you need T3 to feel well.) Get your doctor to give you enough T4 to suppress TSH properly first. If you're still not feeling well, talk about dropping the T4 a little and switching to a combination of a T4 and T3 or a natural thyroid supplement.

burdee Enthusiast
burdee
Posted

OMG Burdee!!! can i take you with me to my PCP for my thyroid talk and testing???? seriously- i bet you could prescribe better that she could

im scared now. i felt a validation with the celiac dx- but i dont have to take a Pharmaceutical for celiac. i know i may very well have hypothyroid (my last TSH in 2006 was over 4.50)... and i dont really want to have to deal with daily meds with side effects or "fine tuning" :/

Hi Cass:

Your last TSH result (over 4.50) suggests hypothyroiditis. Having celiac disease makes you vulnerable to autoimmune Hashimoto's thyroiditis, which could damage the thyroid and reduce T3/T4 production, which causes the pituitary to increase TSH production. In 2003 the American Association of clinical Endocrinologists revised the old TSH normal range from 0.5 to 5.0 to a target TSH range of 0.3 to 3.0. However many labs and docs still use the old range and would consider your 4.5 TSH as 'normal'.

My TSH was above 3.0 for years, but my HMO PCP ignored those results and my symptoms. However, I recently found a naturopath who wanted to determine why I developed 8 different gut bug (bacteria, parasites and candida) infections in 4 years. She ordered blood tests for TSH, free T4, Vitamin D levels, CBC, Lipoprotein (cholesterol), ferritin, metabolic panel, etc. My low vitamin D, low T4 with high TSH, and low white blood cells explained why I was vulnerable to one infection after another. I had just learned to live with feeling cold all the time, dry skin, chronic constipation, fatigue, and other hypothyroid symptoms. My new doc said having undiagnosed celiac disease for many years (while I was misdiagnosed with 'gastritis' and 'ibs') made me vulnerable to Hashimoto's thyroid damage and decreased thyroid function.

Once I stopped eating gluten, the autoimmune Hashimoto's damage stopped. However, I still need low dose Levoxyl to lower my TSH, raise my T4 and decrease my symptoms. I already take vitamins, HCL supplements and probiotics. So I just take the thyroid supplement with my probiotic when I first wake up, at least an hour before I eat and several hours before other supplements.

SUE

cassP Contributor
cassP
Posted

wow girls!! i am going to PRINT THIS thread out for my next visit with my PCP. cause this goes over my head and im assuming my doc doesnt understand the complexity as you girls do- oy vey... i really have a handle on all the celiac tests and numbers... but all these T numbers are new to me

thankyou sue & skylark for all your input :)

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Reba32 Rookie
Reba32
Posted

if you suspect that you have an auto-immune thyroid disease, you really should ask for a referral to an endocrinologist who understands the disease and can treat it properly. A GP will not understand the complexities of all the numbers.

burdee Enthusiast
burdee
Posted

if you suspect that you have an auto-immune thyroid disease, you really should ask for a referral to an endocrinologist who understands the disease and can treat it properly. A GP will not understand the complexities of all the numbers.

I'm not seeing a GP for thyroid and other autoimmune problems. GPs misdiagnosed my celiac disease as 'gastritis' or 'IBS' for 20 years. When I had parasitic intestinal infections, my HMO PCP asked where I could have gotten that, if I don't travel internationally. She also overlooked my abnormal TSH results for years, because my HMO did not adjust their normal ranges as advised in 2003 by a national Encrinologists group.

cassP Contributor
cassP
Posted

if you suspect that you have an auto-immune thyroid disease, you really should ask for a referral to an endocrinologist who understands the disease and can treat it properly. A GP will not understand the complexities of all the numbers.

are u talkin to me? Lol... Regardless- im taking the advice and asking my gp for referral- its a good idea :)

burdee Enthusiast
burdee
Posted

are u talkin to me? Lol... Regardless- im taking the advice and asking my gp for referral- its a good idea :)

I suspect that comment was directed to me. See my reply about my experience with GPs and PCPs just above your reply comment.

SUE

cassP Contributor
cassP
Posted

I suspect that comment was directed to me. See my reply about my experience with GPs and PCPs just above your reply comment.

SUE

oops my bad... Ive only been online via my phone all weekend- so cant hardly see everything :)

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