# Need help



## ladybug17 (Jun 9, 2016)

I have a thyroid issue that I need help with. I was diagnosed with hypothyroidism 25 years ago and several years ago with hashimoto's. I have been on 200 mcg of levoxine for eons. As of last year, my hair started for fall out horribly. throughout the years, my thyroid labs have come out in normal range with the 200 mcg.

This year, I had an episode that landed me in the ER. They admitted me and did all kinds of tests on me, EKG ect...Everything turned out normal except my thyroid tsh was 0.01 (hyperthyroid). So, I went to my doctor and he decreased my thyroid med to 1.75mcg and after two months tsh was 0,.030 ....T4 at 2.10. Doctor didn't order any free T3 on each lab order

He lowered my dose to 1.25 mcg and two months later (today) my level was at 0.047 (still hyper). T4 went down to 1.86

My question is why after all these years (10 years) on being on 200mcg of levoxine for hypothyroid has dramatically changed to hyper.?

Also, does this mean I may have graves disease? My vision has worsen dramatically in the last 6 months.

Can you have both hashimoto's and graves or am I jumping the gun on this?

Also with a free t3 (which i don't understand) does that make a difference? I feel so tired all the time and I'm sick of it. Should the doctor lower my thyroid med a lot lower?

One more question.....Is two months enough time in between thyroid lab checks?

I'm sorry for all of the questions, but I'm fed up. I do see an endocrinologist in a month and a half. I also have a thyroid nodule that was spotted on a c spine CT.

Thank you, Love, Ladybug.


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## Lovlkn (Dec 20, 2009)

> Can you have both hashimoto's and graves or am I jumping the gun on this?


Yes, it is possible and antibodies testing would help to confirm. TSI is the "Graves disease" antibody. Your doctor or endo might want to run this test to rule it out.

200 mcg is quite a high dose, but appropriate for someone weighing in the 257lb range. Sometimes just a few lbs of weightloss can change a persons once stable labs, have you had any recent weightloss?

Have you changed manufacturers of your medication? Different manufacturers use different fillers which causes a person to process differently.

Have you added or removed any supplements or changed your diet dramatically in any way?

When is the last time you had an ultrasound on your thyroid?

Can you please edit your post and put the ranges for the FT4 labs run on you and if you had FT-3 also include those ranges as each lab uses different ranges.


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## ladybug17 (Jun 9, 2016)

Lovlkn said:


> Yes, it is possible and antibodies testing would help to confirm. TSI is the "Graves disease" antibody. Your doctor or endo might want to run this test to rule it out.
> 
> 200 mcg is quite a high dose, but appropriate for someone weighing in the 257lb range. Sometimes just a few lbs of weightloss can change a persons once stable labs, have you had any recent weightloss?
> 
> ...


My last thyroid U/S was 8 years ago but it was done by a friend that I worked with in radiology on the sly......no doctor report..

Doctor didn't order a free t3

free T4---1.87 R(.93-1.70)

TPO-1000 taken in 2010

I did lose weight due to stress---but 200 mcg was keeping my thyroid tsh in normal range.

TSH 0.047----R(.400-4.500)

Waiting for the new TPO lab work...does that show graves? the lab tech said it does

Thanks for answering some of my questions. I will ask the Doc for a TSI when he calls me in soon when he sees my thyroid is still very low.


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## Lovlkn (Dec 20, 2009)

> TPO-1000 taken in 2010


WOW! This is reason enough for a new ultrasound in 2016



> Waiting for the new TPO lab work...does that show graves? the lab tech said it does


TPO shows inflammation. My TPO increased from 476 to over 2000 by the time I had my thyroid removed for Graves disease. A TSi would help confirm Graves. Mine was 350% when mine was removed.



> free T4---1.87 R(.93-1.70)


This is definitely a hyper range result.

You need to start insisting they run a FT-3


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## ladybug17 (Jun 9, 2016)

Lovlkn said:


> WOW! This is reason enough for a new ultrasound in 2016
> 
> TPO shows inflammation. My TPO increased from 476 to over 2000 by the time I had my thyroid removed for Graves disease. A TSi would help confirm Graves. Mine was 350% when mine was removed.
> 
> ...


For sure! Question, since I'm on 1.25 mcg lev. shouldn't my doctor lower it substantially? Will see what my TPO results say. Sincerely, Tired and worn down in calif. ladybug...


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## Lovlkn (Dec 20, 2009)

> free T4---1.87 R(.93-1.70)


Your lab result here is out of range - points to a need to reduce your medication.

Call your doctors office if they have not yet discussed a dose reduction with you.


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## ladybug17 (Jun 9, 2016)

Hi all.  Went to the doctor and he lowered my thyroid med to 75 mcg. So he said that my thyroid is kicking it. Can a thyroid disease be cured? I don't think so, however my tpo was 1000 in 2010. TPO-499...hmmmm. He didn't order more test because I see the endo in a month. I still don't understand that after all these years of hypo being treated with 200mg for 15 years could suddenly go into hyper? No one has answered that question yet  . Anyways, I'm still confused until I see the real doctor (endo). thanks and GB.


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## jenny v (May 6, 2012)

Sometimes with autoimmune diseases, the thyroid can suddenly kick back into gear and start spitting out hormones again. It happens a lot in late stages--the thyroid tries to 'fight back' and then it slows down again. It happened to me quite a bit towards the end before my thyroid was removed.


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## Lovlkn (Dec 20, 2009)

I would agree. Still have those antibodies tested to confirm why. And an ultrasound


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## ladybug17 (Jun 9, 2016)

jenny v said:


> Sometimes with autoimmune diseases, the thyroid can suddenly kick back into gear and start spitting out hormones again. It happens a lot in late stages--the thyroid tries to 'fight back' and then it slows down again. It happened to me quite a bit towards the end before my thyroid was removed.


Just curious what is "late stages"? Is it possible that the endo would eventually take me thyroid out? Is that why my PTO lessened because I'm in hyper? It was 1000. What are chances of me having graves disease...I guess that would come with the TSI test duh. Thank you for responding.....GB


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## WhatHappened (Nov 12, 2015)

With Hashimotos, your body is attacking your thyroid, gradually killing your thyroid so it functions less and less well over time.


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## ladybug17 (Jun 9, 2016)

I like to thank everyone here for your answers...... hugs6 I have been going arty0045: banana's trying to figure these things out before I came here. I have been so :sick0012: sick with this...ugh. On top of everything, I was diagnosed two weeks ago with cervical dystonia by a neurologist and had a brain Mri a few days ago. Plus, many other issues with my neck(herniation, stenosis and degenerative disk disease) and other things.... :sad0049: I've been trying to get ssdi and I think I will get it when I see the trial judge. So with that, I will keep ya all posted when I see the endo doc. I worked in the medical field for many years as an Radiology Technologist and I can't do it anymore :sad0049: But, I keep my hopes up because there are so many people suffering way worse than myself . GB


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## ladybug17 (Jun 9, 2016)

Ugh...What I wrote did not make sense...I will see the endo and give the latest result..that will be at the end of July LOL...GB..


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## ladybug17 (Jun 9, 2016)

Hi, I'm really concerned about the new numbers on my labs. My primary doctor wouldn't order a Free t3 but I do see an endo doctor next friday. As you all know I went from hypo (hashimoto's) which I've had all these years and my thyroid did a switch to hyper. I had to insist to my Primary doctor to test me again because I could hardly function....Here is my levels now

Just TSH no T4 or Free T3

Feb 2016 .....0.01 TSh....Doctor lowered my dose from 200 mcg levoxine to 1.75

4/1/16 0.030 Tsh....lowered dose to 1.25

6/7/16 0.047 tsh......lowered dose to .75

8/29/16 23.250 High......

As you can see I'm back in hypo in this short amount of time and I can barely even get my thoughts right. Any advice until I see my Endo next week...I know I will call the doctor office in the morning to heighten my dose

UGH.

I've been on 200 mcg for 10 years and my thryoid tsh was fine and in January it flip flopped and now it flip flopped again. Thanks...ladybug


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## ladybug17 (Jun 9, 2016)

ladybug17 said:


> Hi, I'm really concerned about the new numbers on my labs. My primary doctor wouldn't order a Free t3 but I do see an endo doctor next friday. As you all know I went from hypo (hashimoto's) which I've had all these years and my thyroid did a switch to hyper. I had to insist to my Primary doctor to test me again because I could hardly function....Here is my levels now
> 
> Just TSH no T4 or Free T3
> 
> ...


I'm on .75 so I will double it up I guess just until I see the doctor


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## Octavia (Aug 1, 2011)

Okay...your doctor appears to be dosing you purely based on your TSH results. Bad doctor. He/she should be testing your Free T3 and Free T4.

It sounds to me like your doctor is not very experienced in treating thyroid patients. Would you agree?

When are you taking your meds on lab testing days--before or after your blood is drawn?


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## ladybug17 (Jun 9, 2016)

Octavia said:


> Okay...your doctor appears to be dosing you purely based on your TSH results. Bad doctor. He/she should be testing your Free T3 and Free T4.
> 
> It sounds to me like your doctor is not very experienced in treating thyroid patients. Would you agree?
> 
> When are you taking your meds on lab testing days--before or after your blood is drawn?


Yes bad doctor is an understatement! I asked him to do a Free T3 and he said (and the other doctor in the room agreed) that free T3 is useless and not needed. I always take my meds in the morning on an emply stomach and wait at least two hours before I eat. I called the doctor this morning and he just shrugged it off and said to wait to see the endocrinologist next Friday....,meanwhile, I'm extremely fatigues, depressed and the anxiety is overwhelming. I think it switched back suddenly, like in the last 3 weeks. I walk around like zombie and I'm a writer for a newspaper and when I was in hyperthyroid, I wrote a novel and now I can't even begin to do a second draft. I try to read, but to no avail. All I can actually do is play online play money poker. My attention span is zero. I even locked my keys in the car with the car running in a unfamiliar town five days ago. it was a nightmare. Sorry for the saga, but I'm just venting really. I'm misplacing items and all kinds of crazy things. Sorry, I'm not putting these into paragraphs, I'm to darn lazy to do it. Thank you so much for your concern. I'm just really frustrated plus I have few other illness's on top of this that is making things a lot worse for me. (((hugs))))


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## Octavia (Aug 1, 2011)

Okay. When you get your new labwork (and hopefully this endo will order new labs, INCLUDING Free T3 and Free T4), I suggest skipping your morning thyroid meds, and instead taking your thyroid meds AFTER your bloodwork is drawn.

I'm glad the online poker is just play money. :hugs:


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## ladybug17 (Jun 9, 2016)

Octavia said:


> Okay. When you get your new labwork (and hopefully this endo will order new labs, INCLUDING Free T3 and Free T4), I suggest skipping your morning thyroid meds, and instead taking your thyroid meds AFTER your bloodwork is drawn.
> 
> I'm glad the online poker is just play money. :hugs:


LOL...Yep play money...I'm glad you suggested that because I doubled my dose this morning. So don't take any thyroid replacement at all? What if it gets worse? I'm going to take your word for it though because you are the "Super Duper Moderator". hugs1


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## Octavia (Aug 1, 2011)

Oooohhhh.....just to clarify....don't take your thyroid meds ON LAB DAY until after your labs. Take your prescribed dose until then. Hope that makes more sense. 

Generally speaking, it takes about 6 weeks for your labs to "catch up" to your new dose.


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## ladybug17 (Jun 9, 2016)

Octavia said:


> Oooohhhh.....just to clarify....don't take your thyroid meds ON LAB DAY until after your labs. Take your prescribed dose until then. Hope that makes more sense.
> 
> Generally speaking, it takes about 6 weeks for your labs to "catch up" to your new dose.


Okay that does make more sense....Whoosh. No doubling, just the same amount. Thanks.


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## BurntMarshmallow (Feb 26, 2016)

Hi LB,

Try taking your thyroid meds with a vitamin C tablet. Levothyroxine requires some acid to get absorbed. Normally when you eat food, the taste of food in your mouth triggers the release of enzymes and stomach acids for digestion. So when you take the thyroid meds without any food, as everyone is told to do, your body doesn't know it needs to secrete any stomach acid. Taking thyroid meds with vitamin C, or citric acid, helps compensate.

https://www.endocrine.org/news-room/press-release-archives/2008/absorptionofthyroiddrug

I'm not sure why you went to hyper and then to hypo so quickly. Last Feb, did you have symptoms of being hyper or was your doctor just going off your TSH being so low?

TSH actually has a seasonal rhythm in healthy thyroid people. TSH rises in the summer and slowly goes down slightly in the Fall. In the winter, TSH naturally is supposed to be lower than the rest of the year. This seasonal rhythm is controlled by melatonin, which your pineal gland makes based on the amount of sunlight. Melatonin goes up in the winter as the nights are longer. It could be that in the winter your levothyroxine dose was too high. Then by the time your doctor lowered it, it was Spring, when you needed it to start rising. BTW, never take melatonin if you have a thyroid condition. I only know about this because I messed around with melatonin myself, and then found the research.

There are three carrier proteins for T4. Various things can cause carrier protein numbers to go up and down. For example, corticosteroids cause a drop in thyroxine-binding-globulin (TBG), freeing up more T4. Estrogen causes a rise in TBG, tying up T4 so it can't be converted to T3. https://en.wikipedia.org/wiki/Thyroxine-binding_globulin

Normally the liver clears away estrogen after ovulation each cycle. But the liver requires the vitamins thiamine, riboflavin and B6 to do that. If you are low in these vitamins, you could build up estrogen each month, which would bind up more T4.

Zinc and vitamin A deficiencies can affect Transthyretin another T4 carrier protein. Your doctor can test your carrier protein levels.

In your shoes, with the misery I hear that you're feeling right now, I'd get some beef liver today and eat it. It's the best source of vitamin A on the planet. It also is high in zinc and iron and b-vitamins. It best soaked for an hour in milk first, and then coated in a flour and sautéed with onions. I had it last year for the first time, and while the taste was only tolerable, afterwards I felt like a super hero for three days. You can also buy beef liver in tablet form, but you need to take a lot of tablets. Chicken liver has a more mild flavor and is also high in vitamin A although not as much.

As for taking a double dose of levothyroxine, it's not as risky as you'd think. The half-life of T4 is 5-7 days. If you take 200mcg today, tomorrow there would be 180mcg left. After two weeks of taking 200mcg a day, you have 1435mcg built up. There is a website somewhere where you can even calculate based on your weight how much thyroid hormone your body needs in total. Then you can see how much your thyroid is making vs how much you get from a medication. Anyway, one double dose isn't going to have much of an impact unless you take a double dose for several days in a row.

I hope you get some relief soon!

Amy


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