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Avatar universal

Grave's Disease - Diagnosed Myself

I have been suffering from lack of focus, concentration & motivation for over 6 years.  I saw 5 different doctors and was told I had depression.  In addition to the lack of mental ability I previously mentioned other symptoms have become more apparent during these 6 years.  My menstrual cycle also became irregular, my eyesight declined (it would be ok some days and terrible the next), swelling in my neck, eyes bulging, hair and skin were so dry I stopped using soap on them.  I should mention that the swelling in my neck did start 6 years ago.  I explained it away as hereditary.  Many of the women in my family have a double chin.  I forgot to mention I also started sweating 6 years ago.  I explained a lot of these symptoms away as early menopause or some other reason.  All my blood tests were returning as normal range for T3 & T4.  

I have been researching trying to find what illness I had and came across thyroid disorder and specifically GD because of the bulging of my eyes and my on and off vision problems.  To get to the point.  I don't have insurance and didn't want to see another doctor for them to only tell me that my symptoms are in my head.  The mental ability symptoms had come upon me very suddenly, within 60 days I just wasn't myself anymore.  I told all 5 doctors I saw that I didn't think I had depression because I experienced the symptoms in such a short period of time but they didn't seem to care.  I decided that I would order Tapazole (Timazol) myself from the internet without a prescription.  It has been working.  The swelling in my neck has been noticeably reduced, my cognitive and mental ability improves daily and my eyesight also improves daily.  It's remarkable.  I want the community's opinion on what I'm doing.  Please keep in mind that all the doctors I saw were giving SSRI's that made my condition worse.  When I took them then I really felt depressed.   Please advise
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Avatar universal
i wanted to update on my condition.  i stopped medicating myself.  my face got paralyzed and i was in the hospital.  after many tests the neurologist concluded that since there is nothing wrong with my brain that could cause the paralysis i must have thyroid/hormone problems.  it just so happened that i had made an appt w/ an alternative med doc 5 weeks b4 and my appt was the forthcoming wednesday.  i saw the alt med doc and based on lab results that i had with me he concluded that i am hypO as goolara said.  fyi:  he also said i have estrogen dominance.  my tsh and t4 come out normal because my problem is with t3.  i've been taking compounded thyroid for about 4 weeks and my brain feels a little better but my energy and motivation are down down.  but after 10 years of an abnormal low body temp i am consistently 98.6 like i was used to all my life.  i've only had 1 visit with this doc.  based on the testing he gave me to take (sanesco neurotransmitter or neuroendocrine kit in addition to every hormone and vitamin thru blood tests.) he must think that i'm deficient in not only hormones but neurotransmitters.  when i researched this amino acid deficiency i see that's it's possible and probable.  i only read reviews of the supplements used to treat the condition.  i feel this is the only way i can really trust if a supplement product really works.  i was happy to see a few reviews, not many, but all were positive.  sanesco provides a model that practioners follow.  i also found bad reviews or 1 bad review for the therapy that's called targeted amino acid therapy or taat.  the bad review didn't focus on whether or not the lab tests and supplements worked but rather the company and how they sell their product.  all the reviews of the supplements were positive but there weren't many.  i'm going to use whatever he tells me to.  i'll keep this updated even if you guys don't look at it.  i hope this is the answer to my problem.  my life has really suffered from this.  i don't want anyone else to have to go through this.  btw in the reviews i did read all the users had similar symptoms and situations to mine.  it does make me feel as hopeful as i can be.  
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6555161 tn?1382381862
I'm agreeing with goolarra here-that's a decision you and your doctors need to make. Everyone's body reacts different to any medication-I mean, my husband can take the red coated generic ibuprofen, but I can't since whatever's in the coating makes my tongue and throat tingle and itch. The same goes with the thyroid medications out there: some people do great on Armour, some people don't, some people can convert just fine with a generic T4 med alone, some need cytomel added, some need brand names only, some need a compounding pharmacy to whip up their medication, etc. It's worth bringing up with the doctors that it's bothering your teeth, but it might be something as simple as needing a dose adjustment or adding T3 in.
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Avatar universal
I don't think you should skip TPOab.  We are not born with our antibodies, we develop them over time.  Your TPOab was slightly elevated, though still in range, a couple of years ago.  It could have been the beginning of something.  I think TPOab could be key in getting you treatment.  Just because TPOab was "normal" a couple of years ago doesn't mean it is today.

Halfshellie, I cannot help you treat yourself.  The MedHelp mods will shut this thread down faster than you can blink if I attempt to "practice medicine without a license".  Futhermore, it would be terribly unfair to you to attempt to give you advice with so little to go on.

Playing with T4, you are in the frying pan.  Armour contains both T4 and a sizable amount of T3.  Once you start playing with T3, you have jumped into the fire.  T3 is about four times more potent than T4, so you can get yourself into trouble with it that much faster.  Some people feel better on Armour, some don't.  Whether or not you need Armour depends on the balance of FT3 to FT4 in your labs.  The people who purport that Armour is a universally better drug are as bad as the people who say everyone will do fine on T4 only.  

I hope you had a good Thanksgiving as well.        
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Avatar universal
hi G,

I have made a final decision w/ reference to doctors-insurance vs being my own doc.  although i do agree with the adage "a doctor/patient who treats themself has a fool for a patient" logically I have been my best doctor. Or I have had the best success in treating myself.  That being said I am going to order tests thru directlabs.com and want your advise on what I'm ordering.  I am ordering Free T3 & T4 and TSH only for now.  The TPO I have from ZRT labs does include ab's that I think are normal so I'm not ordering.

I just went thru our previous communications and I see that you have already told me the answer to my above request.  Thanks.

While I am posting to you can I please ask your advice again.  I started taking .025 mcg of Synthroid yesterday (11/27) again.  I was feeling all of my previous symptoms coming back in full force and decided if I did take it and felt better today I was going to help myself in lieu of doctors.  I just can't wait any longer to feel better.  When I have a F/T job I will purchase insurance and see a doctor.  I need to feel better to find a job so this is logical to me as well.  Anyway the Synthroid hurts my teeth.  I noticed it when I was taking it 2 weeks ago as well.  I want to substitute Armour for Synthroid.  I have periodontal disease and don't want my teeth getting any worse.  I didn't see any info about Syn making Perio any worse but I did see many people who experience the same tooth pain as myself.  In addition I took a brief look at Syn vs Armour and many people have a better experience (more do than don't).  Do you have any opinion, advice or information?  

Thanks and Happy Thanksgiving Day.
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6555161 tn?1382381862
Oh, yeah. Definitely not cheap. Some really basic tests can be, but thyroid and others are pretty pricey.

I agree with you about the GP-a GP is a doctor, and should be able to handle thyroid. some are good at it, some aren't, and usually they do recommend an endo. I've had bad experiences with both past GP's and Endo's with my thyroid, so it is kind of a roll of the dice-I'm hoping halfshellie finds someone to listen and run the right labs. Halfshellie, have you looked into an ENT? They might be able to help, or even a Immunologist? (They're usually similar to rheumatologists, sometimes even a rheumatologist can run tests.)
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Avatar universal
I was just on ZRT's website, and I notice they call TPOab TPO, and there was no vanilla TPO listed among their tests.  I asked a friend of mine, and he concurred that it was probably a misidentified TPOab.  I think we can assume that was an antibody test.  The range is very unusual.  Typically, TPOab range is less-than 20 or less-than 40.  I've never seen one that went up to 150, nor that had a "borderline" range.

Unfortunately, you'd be very surprised how many people aren't up to date on thyroid, and even worse, many of them are teaching future doctors.  

Perhaps it would be worthwhile to go for the U/S and order the remainder of the tests online?  Or get the labs she ordered and supplement with your own TPOab and FT3???

I just looked at directlabs.  They call TGab TAA; it's the same thing.  Wow, not cheap, though.

I'd give that Synthroid just a little more time to get out of your system before testing.  I'm really afraid that if you don't, it will make your labs look healthier than they are.  

As far as the GP treating...GPs should be able to treat thyroid, mine did, albeit not well, which is why I ended up with an endo.  The fact of the matter is that most doctors, unless for some reason they have a personal interest in thyroid, really only look at TSH.  They may order other tests, but by and large, they're ignored.  So, what most people find is TSH has to be out of range before their doctors will treat.  Some doctors want TSH over 10.  It's often hard to find a GP who knows that not everyone is comfortable everywhere "in range".  Do you have any feeling for your mother's GP?  Does she have a thyroid issue?

You can take some of the chance out of choosing a doctor by interviewing them before you make an appointment.  I did this with a questionnaire, but you can call and ask to speak to a nurse.  One good question is which tests they typically order for thyroid patients.  You want to make sure that they don't just go by TSH.  Another good question is which meds they're open to prescribing...T4 only, synthetic T3/T4 combos, desiccated.  Ideally, you'd like to hear all three, but in reality, that rarely happens.

My gut feeling is that your mother's GP isn't going to commit to a lot before he sees you.  I'd be very surprised if you got as definitive an answer as "No, I never treat thyroid."

I see that directlabs refers to TPOab as TPO.  Under "Complete Thyroid Panel + Thyroid Antibodies", which I assume is what you'd order, they never mention "antibodies" in their description of TPO.  On the other hand, under "CWP + Complete Thyroid w/ Antibodies", they clearly state that the TPO test is antibodies.  I assume they are both ab, but you know what happens when we assume.  It's probably worth the question.
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Avatar universal
Sorry for all the posts.  I'm obsessed with this now that I feel I have a plan of action or 2 possible strategies that will work correctly.  Although I have not been taking any thyroid meds for 9 days and for free T3 and T4 numbers to be correct I have to wait 6 to 8 weeks can I order a TAA, TIS and TPO (not sure if directlabs.com TPO is definitely antibody.  Site says it is but I am going to make sure tomorrow - Monday 11/25) and get correct antibody numbers?  

Thanks.....
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Avatar universal
I've been thinking my plan of action over and over.  I visited directlabs.com and can order the tests you recommended.  I'm a little confused about the Antithyroglobulin test.  I think you referred to it as TGab and directlabs calls it TAA.  

Here's what I'm thinking.  I want to get tested ASAP.  If I test myself via the directlabs tests and take those results to the GP that my mother goes to (given the results indicate dysfunction) do you think he will prescribe for me?  Maybe I should call his office and ask.  I'm not so sure that I will be able to afford health insurance for the next year.  This plan would enable me to get the tests I want/need for about $300.  Seeing the GP is $75 per visit.  I understand that I may need to get these blood tests for several months but maybe the GP will work with me if I have to skip a month.  If I take this plan of action I save myself roughly $100 a month.  The drawback is seeing a GP and not and endo.  I feel like I'm rolling the dice with an endo.  Depending on the insurance plan I choose I may get a hack.  

I like the idea of calling the GP and explaining my situation.  What do you think?  The reason I want to see a doctor is to receive medications made in the US.  I want the tests so I can definitively see what's wrong.

What do you think?  Also directlabs.com offers the TPO with antibodies but refers to it as only TPO.  If I choose to go in this direction I will confirm with the lab that TPO can also be called TPOab.  
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Avatar universal
When I was researching the TPO and TPOab I felt the same way you did.  I couldn't find any info if a TPO includes ab or not.  Like you said some sites refer to TPOab and just TPO as the same thing.  I was thinking yesterday (Saturday) that I would contact ZRT labs and ask if the TPO they refer to is with ab.  I went to their site and couldn't find this out.  I have to admit all the info made my head spin a bit.  

I don't have any faith in the NP.  I didn't mention that when she asked me about my symptoms and why I came to the facility she wrote them down on a paper towel that she ripped off of a roll right in front of me.  I had all my symptoms written down in the log I've been keeping regarding my condition.  I offered for her to make a copy and she declined.  It was ridiculous.  But it was clear she was trying to disprove me only because I was informed and it bothered her or she didn't know the answers to my questions.  One thing you mention that's important is the amount of time for the synthroid to be gone.  The NP said 2 to 3 days and I thought this was too short a time.  It took approximately 45 days for the swelling in my neck to reduce and I was assuming it would take that long to come back.  I believe the only good test I'm getting would be the U/S.  The other tests are probably useful but I'll fall in normal range and they'll be done with me.  I understand there are other people out there that are a lot more sick than I am and being this is a state subsidized facility they have guidelines that aren't up-to-date.  

Anyway here is my plan.  I'm calling ZRT labs Monday morning and finding out about if the TPO was with or without ab.  I'm purchasing my own insurance.  I've looked at quotes online and it's a fortune.  I'll have to make my money work.  I've already sent out e-mails to different insurance companies to contact me.  I'm sure they will be calling first thing tomorrow morning.  As soon as I get the insurance I will find the best rated endo MD that I can get an appointment with in January (letting the synthroid be completely out of my blood) and moving on from there.  Or insisting on certain tests.  We'll see.

I have research to do about the FT3 and FT4.  I have read so much about the thyroid and test results that I can't remember everything.  I'm glad to know that I should be in the 50% range for both.  I may need you to help me with any questions after my research.  I really need to take a break today.   I get mentally fatigued from this thyroid dysfunction.  It's one of reasons I knew something was wrong with me.  My brain used to work very quickly and I remembered things easily.  I really want that brain back.  It's probably the #2 reason I have been relentlessly pursuing this and using meds that haven't been prescribed.  I know I can't do that though.  However if I didn't do that I would not be so convinced that my problem is with my thyroid.  Something good did come from doing a bad thing.

I will let you know what ZRT tells me about the test.

As usual thanks for your help.  

@bedheadblonde - thanks for your help as well.  I live in NJ and if I find that the insurance is just too high I will get the labs myself.  I had previously visited directlabs.com but I didn't even know what tests to order for myself at that time.  At this point I really want an MD.  I'll make it work.
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6555161 tn?1382381862
Depending on where you live, you can order blood tests yourself, you just have to visit a lab that participates with them. I ordered a TSI test through directlabs.com when my endocrinologist refused to do one for me (he said that's usually to diagnose and no need for it to be done while you're going through recovery, however I had seen many say they had gotten that test done throughout their treatment just to make sure their antibodies were going down/staying steady, and since I flipped from hypo after RAI to hyper very quickly, I wanted to make sure they weren't sky high) The only problem is you have to pay out of pocket-though directlabs offer lower prices, it's still something insurance won't cover if you had any, however I know they do thyroid tests-FT3, TSI, TPO, TAA, etc.  The catch is they don't offer any services in MA, MD, ND, and SD, and though services are available in NY, NJ, and RI, their selection isn't quite as large as other states. (other states seem to have a complete panel test to get them all drawn at once, it seems NY, NJ,and RI have no real large panel to get them checked, so you have to order what you want separately.) However, I live in NYS and was able to get the TSI done no problem, right at a blood lab that works with directlabs. Got the results in two days.
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Avatar universal
Except for really good thyroid doctors, most health care professionals do nothing but look at your result and see if it's within normal limits.  If it is, "there's nothing wrong with your thyroid".  We all know that's so much baloney; lab ranges are very flawed and most people have to be at least midrange (50%) on FT4 (yours was 33%) and upper half of range (50+%) for FT3 (yours was 15%).  

I wish I were more comfortable knowing if that TPO is really a TPOab or not.  Whenever I search for a TPO test, I get a whole pile of info about TPOab to the total exclusion of any mention of TPO.  Some very reliable sites refer to TPOab as TPO.  Grrr...  I'm beginning to wonder if a TPO test even exists.  Perhaps they're using the terms interchangeably.  Do you have a lab name?  Perhaps I could find out more by getting on their site (if they have one).  Let's get back to that later...

I just wanted to make sure that she was ordering both TSH and FT4.  There's a test called "TSH with reflex to FT4".  What that means is "test TSH, if it's ABnormal, test FT4, too:.  So, as you can imagine, it often ends up being nothing but a TSH test.  There's also a "thyroid cascade", which in addition to the above goes on to say "and if FT4 is ABnormal, teest FT3".  Once again, further testing all hinges on TSH being out of range.

Let me make sure I have this right.  You took 100 mcg of Synthroid for eight days and discontinued it 4 days ago.  It takes Synthroid 4-6 weeks to get completely out of your system.  So, that 8 days of 100 mcg is going to be raising your levels for a while.  You might want to give it a little time before your blood draw.  It could make you look "less" hypo for a while.

I have to admit that this NP doesn't inspire a whole lot of confidence in me, either.  The T3 uptake makes me think she doesn't know what she's doing.  She probably thinks it actually measures T3.  Let's assume for a second that your TPO actually was a TPOab.  In my opinion, your result was high enough to have a look at it again further down the road (like now) to see if it was the beginning of something.  She should have been willing to test both TPOab and TGab.  You can order TPOab online.

However, I'm not quite sure that you want to throw the baby out with the bathwater.  TSH and FREE T4 are better than nothing, and an U/S is something you can't order online.  Is there any way you can add to your lab order?  What about asking her to replace T3U with FT3 and throwing in TPOab?  That would make the list fairly acceptable.

If you find any info about a TPO (not antibody) test online, please send me the link.  I'd like to check that out further.  I'll see what I can find, too.  

  
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Avatar universal
yes the free t3 & t4 she said were normal were the tests from 2 years ago.  i didn't realize that i had TPO (not TPOab) results from those 2 year old tests.  when i asked her for ab tests she pointed out that the TPO from 2 years ago indicated that i didn't need it or i didn't have any autoimmune problem.

the test from 2 years ago reads------
TPO (blood spot), Current -  28, Units - IU/ml, Range - 0-150 (70-150 borderline).
no ab next to it.  

The lab order reads TSH+Free T4.  there is nothing else.

i stopped taking any thyroid meds (tapazole & synthroid) 4 days ago.  i stopped progesterone 1 day ago.

i don't know a lot about thyroid dysfunction.  i know i felt better (at 1st) taking tapazole and the swelling in my neck and eyesight improved dramatically.  then it stopped working.  i reviewed my labs and the bookmarks i used to diagnose what is wrong with me and saw that i had made an error between hypR and hypO.  i stopped tapazole (5mg/day at night b4 bed) and started 100mcg synthroid in the am.  that's when i really started feeling great.  i have been keeping a log of my symptoms and how well i feel based on a 1 - 10 scale.  after taking the synthroid for 8 days i started feeling like 7.  then i read your post and stopped.  i could also see that my eyes were swollen and thought to myself i am taking too much synthroid and i really need to have blood work done.  

the problem is that thyroid dysfunction can be hard to diagnose.  the tests from 2 years ago stated that i was hypO but fell within normal ranges and that doctor - a hormone specialist never even mentioned it to me.  it wasn't until i read the summary provided by ZRT labs that i finally started moving in the right direction or trying to help myself feel good again.  i know i've said this a lot but bc of this and other previous misdiagnoses and now this nurse telling me that i don't need an antibody test doesn't make me feel secure.  it makes me feel this new set of tests aren't the correct ones and i'll come back normal.  maybe i can order a TPOab myself.  i need an endo.  i have a part time job and can't pay for my own insurance right now.  as soon as i get a full time job the first thing i'm doing is getting insurance.  

what do you think about just having a TPO.  i know what it stands for but i don't know how it relates to thyroid function and if a 28 is good, bad or whatever.  i'm going to research it  now.  thanks for all your help.  please get back to me.
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Avatar universal
"i showed her my free t3 and free t4 and she said i was normal."  Were those the same ones you posted above from nearly two years ago?

"i asked for the antibody test and she said that from the results of 2 years ago i don't have any autoimmune problem."  We're not born with antibodies (well, a few people are); we develop them, and that can happen at any time.  Almost any lab test that's two years old is ancient history.  Very few lab tests are once and forever.

"i did not realize that those tests had a TPO not TPOab and that TPO (only not TPOab) number was 28 with a range of 0-150 (70-150 borderline)."  Are you saying that they tested TPO, not TPOab?  The test doesn't say anything about antibodies?  There are two tests:  TPO and TPOab.  We very seldom see a TPO test, except in certain cases of temporary thyroiditis.  TPOab is the test for antibodies, but it has to say "antibody" or "anti TPO" somwhere in the test description.  Perhaps, in your case, someone ordered the wrong test.  Please type that test description exactly as well.    

CBC and CMP are pretty standard, cheap and worth the money.  Urinalysis is in the same category.  

Does that "TSH+free T4" say something like "TSH with reflex to FT4"?  Type it EXACTLY as it appears on your lab order.

Lipids test panel is also a standard knee jerk test, but it could be helpful since high LDL is a symptom of hypo.

T3 Uptake, despite its name, is actually an indirect measure of T4.  It's considered a waste of money by just about everyone these days.  The direct measure, FT4, is much more accurate.

The reproductive hormone tests seem appropriate given your history.

Thyroid ultrasound is a good idea.  It will give a much better picture of your thyroid than just palpating your neck.

Which meds did you stop 3-4 days ago?  Was that Synthroid?  How long had you been on it before you stopped?  At what dose?

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Avatar universal
i saw a doctor, well not doctor but nurse practicioner.  here's what happened.

i was honest and told her what i've been doing.  i showed her my free t3 and free t4 and she said i was normal.  i also told her that the bioidentical hormone replacement doctor had prescribed progesterone for me and the NP said that I didn't need it based on those 2 year old tests.  honestly i think she was an idiot.  the test results i posted to you from 2 years ago were from a bhrt specialist.  a real MD - OB/GYN.  the NP prescribed a series of tests for me.  i asked for the antibody test and she said that from the results of 2 years ago i don't have any autoimmune problem.  i did not realize that those tests had a TPO not TPOab and that TPO (only not TPOab) number was 28 with a range of 0-150 (70-150 borderline).  she also felt my neck to see if my thyroid was enlarged and said it wasn't.  i had told her in the beginning of the exam that the swelling in my neck has considerably lessened since i started medicating myself.  it really made me think that either she wasn't paying attention or just didn't like that i had an idea of what i was talking about.  

here are the tests she ordered for me:

CBC w/differential
comprehensive metabolic chem panel
TSH+free t4
Automated UA w/ microscopic exam
Lipids Test Panel
T3, Uptake
Progesterone
Estrogen Total
Estradiol
Thyroid Ultrasound

What do you think about what she said about the TPO and that it is an antibody test?  What do you think about the T3, Uptake?  Why didn't she believe that i can see my goiter shrinking everyday?  she didn't make me feel secure.  her attitude was that i was completely wrong.  she wants me to stop taking my progesterone as well.  she said that my body should be free of any of the thyroid meds since i stopped 3 or 4 days ago.  as soon as i did my blurry/vibrating eyesight and swelling in my eyes came right back.

i've read plenty of your posts and would value your opinion on this.....thanks
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Avatar universal
The thyroid function tests you should order are:

FREE T3 (FT3)
FREE T4 (FT4)
TSH

Be sure you are ordering FREE in both.  There are two other tests, called total T3 and total T4.  If FREE isn't specified, you will get totals, and they are not nearly as useful.

Antibody tests for Hashi's are:

thyroid peroxidase antibody (TPOab)
thyroglobulin antibody (TGab)

Once again, be sure you are ordering the test for antibodies.  

The antibody test for Graves':

thyroid stimulating immunoglobulin (TSI)

As long as you're doing it, if this is available, you might as well confirm it or rule it out.

That will get you started.  If the tests confirm your diagnosis, you should be able to get a doctor to sit up and listen and get you on some meds.  
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Avatar universal
that info makes a lot of sense concerning my symptoms.  when the atm stopped working and i thought i was going hypO the goiter started to return.  then i went to 5mg 1x/day at night.

when the goiter started coming back and i stopped feeling good i went to my research and realized that i had confused the symptoms of hypO with hypR.  that's when i ordered synthroid.  i couldn't believe i made such a mistake.

i'm glad to hear that it's possible the TPO can cause TED.  That the goiter and my mood are my biggest problems.  What tests should i order?  Tests for hypO and the ones that will tell me definitively if I have hashi's or just hypO.

thanks so much for your help.  i am being relentless in getting to my problem now that i know i'm on the right track.  i appreciate you.
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Avatar universal
I always check the box below that says "Add to watch list" when I comment on a thread, so I get an email notice once a day when anyone comments on it.  I'll see your posts.

Oh, yes, goiters come with both hypo and hyper.  I'm hypo and I have a goiter (not visible in the mirror) and nodules, both very common with hypo (Hashi's).  TED (thyroid eye disease) is most often associated with Graves', but it is associated with Hashi's as well.

I've been thinking about your goiter being reduced, your eyesight improving and the fact that you took 30 mg of an ATM and didn't feel any different, and I'm wondering about something.  Just a theory, of course, since we don't see many hypo people taking ATMs.  Goiter with Hashi's is often caused by the antibodies, i.e. as they attack the thyroid, it becomes inflamed and swells.  TPOab (thyroid peroxidase antibodies) attack TPO, thyroid peroxidase (the enzyme that catalyzes the production of thyroid hormone).  Tapazole lowers thyroid hormone production by inhibiting the production of TPO.  So, two part theory...I'm wondering if you didn't feel much difference on 30 mg because your thyroid function is low enough already that it really didn't make a huge difference in your levels, i.e. TPO was already low from the TPOab.  I'm also wondering if taking the ATM might have lowered your TPOab count (assuming you have one) since it would have lowered your TPO thus reducing your goiter at least temporarily.  In effect, the tapizole was doing the TPOab’s work for them.  It's also the antibodies that caused TED.

Anyway, I thought you might be interested in all that.  If not, don't give it a second thought...just me trying to make sense of your symptoms/reaction to meds.            

Symptoms can be very tricky.  So many of them can be symptoms of both hypo and hyper.  Until you have experience with each, backed up by lab work to verify, it can be very difficult to know which you are.

If you have any questions about what tests to order, etc., let me know.  I know members who have gone through healthcheckusa, if you decide to pay for tests yourself, and have had very good luck and prompt service with them.  There are other online labs as well.  Not all are in all areas.

I'm so glad to hear you've stopped the meds.  As you said, only blood work will tell...  
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i have stopped taking everything except my supplements....

fish oil
vitamin d
curcumin

i don't want to go back but after posting here and getting advice i believe that i might be hurting myself and i will work hard on getting a doc or ordering the tests myself.  if i can't get help thru ss i will pay for insurance myself.
i should have some kind of insurance in the 60 days or be able to order the tests sooner than that.  i will post my results so please keep checking for my posts.  i feel confident that i am on the right track.  and i do believe that i am probably hypO.  i think i misread hypO symptoms thinking they were hypeR now that i look over my research notes.  i'm glad for your help.  i trust real life people vs physicians right now.  the only reason i thought i had graves was bc of bulging eyes and goiter.  when i took the tapazole the goiter shrunk and i could stop using my reading glasses.  but who knows.  only the blood tests will tell.  tell me this is a goiter related to hypO too? and what about eyesight?  there is no doubt that these 2 symptoms were going away.  what do you think?  
thanks again.  .  
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Halfshellie, please believe that when I tell you this, it's out of a deep concern for your well-being:  You haven't a clue what you're doing, and it would be my advice to stop trying to treat yourself IMMEDIATELY.

Thyroid meds take time to build in your system and time to work.  No one, ever, switches directly from tapazole to Synthroid and then back in a matter of days or weeks.  If you're taking too much of one or the other, a meds decrease is indicated, but you don't just start taking the other.

If you were feeling the worst you've ever felt just before the old labs you posted, you certainly were not hyper at the time.  Those labs were definitely on the hypo side.

If I were you, I'd pursue seeing a doctor through social services.  In the meantime, I think it's very important that you stop trying to treat yourself.  You could be doing exactly the opposite of what you should be doing.  If you stop taking meds, when you see your doctor, you will get a true, unmedicated baseline.

When you get new labs, if you'd like to post them with reference ranges, I'd be more than happy to help you interpret them and suggest how to approach your doctor for treatment.  In the meantime, what you're doing has me very, very concerned...  
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I forgot to answer your question about how I was feeling when the tests were done.  I was feeling the worse I had felt.  I couldn't even get out of bed for weeks. These tests were done by BHRT doctor.  I had followed the protocol for depression which was completely ineffective and made no sense to me being I never felt sad nor did I have any reason to.  When I started taking my condition into my own hands I thought that it might be hormonal so I whet to Bioidenticals which had no effect either.  I did start taking 200 mg progesterone approximately 60 days prior to the tapazole.  that did help but I still see something was missing.  That's when I started my research again and saw that all of my symptoms closely match Grave's because of the builging eyes.  
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I do have both symptoms of HypeR and HypO.  When I felt hypO after taking the Tapazole for 3 weeks.  I ordered Synthroid.  I stopped the Tapazole and started taking 25mg 1/day for 3 days and felt the way I had been feeling for the past 5 - 6 years coming back.  My physical symptoms are enlargement of the glands in my neck, swollen eyes, sweating, warm skin, blurry or vibrating eyesight, decreased menstrual flow and severe weight loss and extreme fatigue.  I only weighed 115 when i lost 16 lbs.  My thinking symptoms are confusion and unable to focus.  My emotional symptoms are always having a negative outlook and lack of motivation.  The emotional symptom started within 9 months the sweating, eyesight problems and swelling.  At first I did not know that all these symptoms were related to thyroid dysfunction.  I only told my PCP about my lack of motivation and menstrual irregularity and she saw the extreme weight loss.  It wasn't until a year later that I started to notice the swelling in my eyes.  Anyway, I thought I might be hypO and had the symptoms confused.  I took the synthroid and stopped the Tapazole however I felt that lack of motivation and negative thoughts coming right back.  I researched and found that people can be hypeR and hypO and have both Hashimoto's and Grave's.  The bottom line is I need a doctor.  I just can't go back to the person I was before.  Having whatever thyroid dysfunction I have ruined my life.  My long term relationship ended and I haven't been able to keep a job.  I have felt better using the Tapazole.  Not 100% but enough to be able to think clearly, not have negative thoughts (I have always been an extremely happy and positive person until this)  The only time I would ever get angry was the day before my cycle started.  I could set my watch to it.  I'm glad for your input and knowing that I could have both.  I don't have insurance right now and am going to try social services to get to a doctor.  I'm glad that you send me in the right direction of what tests to insist on having.  I am guessing I will have to have to suffer through a months of not taking any meds at all.  In the long run it will help me find out what I have.  The report that I got from the lab that did my work did say that I might have thyroid deficiency but my symptoms reflect more hypeR than hypO.  We'll see and I will keep you posted.  Thank you for the information about being 50%.  This is what I will look for in my tests if the doctor says that I am fine.  I know I'm not fine.  I'm not the same person.  It's my goal to be that person again.  It's actually a must for me.  
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649848 tn?1534633700
COMMUNITY LEADER
"So when I ask for advise I suppose I'm asking for any information anyone has that may help me or even opinions.  I know I'm going to get responses that are rude and not helpful at all.  I feel I already have but I do need to know where to go from here and how to talk to the doctor when I do go."

I'm sorry you felt that I was being rude and not helpful; that wasn't my intention at all.  

My concern about the tapazole was that just like other some medications, people buy them from unknown sources or those that aren't regulated in any way, so they never know exactly what they're getting.

I also get concerned when people self medicate; we've seen that get more than one person in trouble, because so many symptoms can cross over between hyper and hypo, or other things can cause the same symptoms.

goolarra is giving you good advice.
Best wishes.
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Avatar universal
January, 2012 is ancient history when it comes to thyroid, but let's take a look at them anyway:

Free T4 - 1.3 Range - .7 - 2.5
Free T3 - 3.1 Range - 2.5 - 6.5
TSH - 1.2 Range - .5 - 3.0

FT4 is at 28% of range.  Rule of thumb is 50% of range for FT4 (it's not for everyone, but it's what's recommended until we each know where we feel best).  FT3 is 15% of range, and the target there is 50+%.  So, both were low, indicating, if anything, hypO.  TSH, for what it's worth, was just about perfect, indicating that your pituitary was pretty happy with your levels.  How were you feeling when those labs were drawn?

Medicated results would most likely be telling.  Tapazole blocks the thyroid from producing hormone.  Whatever your levels while on Tapazole, we would expect them to be higher were you not taking it.  Though you can't extrapolate exactly what they would be, you can extrapolate "higher".  Of course, there will be gray areas, so your doctor might want you off meds long enough to get a baseline.  As you found out when you discontinued for a while, that doesn't take long.

"Also I was under the impression that thyroid dysfunction is hard to diagnose because the Free T3, T4 & TSH frequently fall within normal ranges."  That is sometimes true, which is why we often discount the bottom half of the range and recommend 50%, as I said above.  You can't just look at the numbers, compare them to the ranges, and pronounce the patient well or sick.  However, once you look at results for a while, you can determine when a result is "in normal range" but too low in normal range, or too high.  Basically, the middle of the range is where most people will fall...the tail ends of the ranges should be suspect.  

TSI will not be affected by meds.  So, getting that done will really provide a lot of information.  Almost all hyperthyroidism is autoimmune, and it's really hard for a doctor to argue with a positive TSI.  However, as with all thyroid tests (I could have left the "thryoid" part out and been just as correct), there is always room for interpretation (the art as opposed to the science of medicine).  So, with TSI, there is a definite gray area as well.  However, I would not hesitate to get that done.

Many thyroid symptoms can "cross over", i.e. some people lose weight hypo or hyper, some have anxiety either way, etc.  It's a bit of an art to even interpret your own symptoms.  Blood work helps a lot, especially once you can establish where in the ranges YOU feel best.

If you get a TSI, you might also ask for TPOab (thyroid peroxidase antibodies) and TGab (thyroglobulin antibodies), which are the two markers for Hashimoto's thyroiditis.  Hashitoxicosis can have symptoms very similar to Graves' and early stages can be characterized by swings from hypo to hyper.  It's also possible to have both.  

So, yes, to some extent you are doing what your doctor will do for a while...experiment with dosage.  However, if you have before and after labs for each dose change, you have a much better chance of getting it right, especially after tracking any trends for a while.

One of your statements:  "When I 1st received the meds I started taking 10mg 3x's / day.  I didn't feel better or worse.  There was no change.  I stopped taking it...I started taking the Timazol again but reduced the dose to 5mg 3 s's/ day.  That's when I started to feel my thyroid gland shrinking.  For the first 4 days of the 5mg 3x's/day I could feel something happening in my neck.  After taking this dose for 3 weeks it seemed like I became hypo.  I stopped taking it for 3 days and noticed that on the 3rd day I started feeling all the symptoms of hyper coming back...I reduced the dose again to only 10mg once a day" has me concerned.

When you first started the meds, 30 mg per day didn't do anything, yet when you reduced the meds, you felt immediate changes.  It doesn't make logical sense that a higher dose didn't make you feel less hyper, but a lower dose did???  Why would you become hypo after 3 weeks on 15 mg per day when you hadn't become hypo on 30 per day?  I'm not trying to be argumentative...I just can't make logical sense of this knowing what tapazole does.
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@goolarra - This is the best advise I have gotten.  I agree with what you said about "a fool for a doctor".  I'm glad that you understand my position though.  If I hadn't had such good results with the meds I would have stopped taking them.  @Barb135 - Although european meds are different than US meds the residents of those countries  do have the same diseases.  I suspect you think that some criminal is making them in their bathtub but that isn't the case.  The meds are from Eli Lilly in France/Russia/Thailand.  

Here are my free T3, free T4 and TSH and the lab ranges from January of 2012.....

Free T4 - 1.3 Range - .7 - 2.5
Free T3 - 3.1 Range - 2.5 - 6.5
TSH - 1.2 Range - .5 - 3.0

I do want to see a doctor and finally have my thyroid dysfunction taken care of correctly.  I can't stress enough how much I changed (physically in my face and mentally is my thought processes) since the onset of this dysfunction (whether or not GD this is definitely thyroid related).  Now that my eyesight and swelling in my neck (goiter) is returning to normal I find it hard to believe that I was living with this.  Actually I wasn't living.  I was barely getting by.

Are you sure that medicated results are still telling?  I was expecting a doctor to tell me that I need to stop taking the Timazol for a period of time and then test.  Also I was under the impression that thyroid dysfunction is hard to diagnose because the Free T3, T4 & TSH frequently fall within normal ranges.  If I request just a TSI from the doctor still using Timazol/Tapazole will the TSI be accurate?  Probably not.  I dread not using it and returning to my previous state.  It was awful.  I know the payoff will benefit me however from what I've read the doctor is going to do the same thing I've done (experiment with dose) for the previous 45 days.  The only difference is I am judging my dose on the improvement of my symptoms and not blood work numbers.  When I 1st received the meds I started taking 10mg 3x's / day.  I didn't feel better or worse.  There was no change.  I stopped taking it.  Then one night I thought I have every symptom of GD.  @Barb135 - at the onset of the dysfunction I lost 16 lbs. in 2 months.  I haven't been able to gain since.  I was sweating all the time as well.  I've never sweat my entire life and would wake up drenched.  I just have too many of the symptoms of GD with the bulging eyes being the hallmark symptom in addition to size of the swelling (goiter) in my neck.  Anyway, I started taking the Timazol again but reduced the dose to 5mg 3 s's/ day.  That's when I started to feel my thyroid gland shrinking.  For the first 4 days of the 5mg 3x's/day I could feel something happening in my neck.  After taking this dose for 3 weeks it seemed like I became hypo.  I stopped taking it for 3 days and noticed that on the 3rd day I started feeling all the symptoms of hyper coming back.  I started reading boards and talked to a friend that has GD as well.  I reduced the dose again to only 10mg once a day at night before I go to bed.  It keeps me awake a bit and now I take it at 5pm.  That was 2 weeks ago and I have improvement every day.  I keep a log of my symptoms so I can review.  Every day I feel that I am returning to the vibrant, curious, relaxed, bright woman I was.  I'm not trying to brag but i was a very happy and healthy woman prior to this.

Look I can't be sure what's wrong with me without seeing a doctor but all the doctors I saw told me that I had depression.  They didn't want to listen to what I told them and were convinced they were right even when I took the medication they gave me and it made my condition exponentially worse.  I followed their protocol.  They made me try 5 different SSRI's all of which had the exact same effect.  It seemed to me that their diagnoses was completely incorrect but by advising me to take these meds they were going to make their diagnoses correct.  I wanted to follow their protocol for depression so that it could be ruled out.  The bottom line is I've done a better job at diagnoses and medication than they did.  That doesn't change that I do want to see a doctor and have this dysfunction (whether GD or just hyper or even hypo) documented.  I just have lost faith.  So when I ask for advise I suppose I'm asking for any information anyone has that may help me or even opinions.  I know I'm going to get responses that are rude and not helpful at all.  I feel I already have but I do need to know where to go from here and how to talk to the doctor when I do go.  I have to see someone who is open minded and trusts that I know my body much better than they do.

@goolarra - Thanks for your good post.  Please feel free to keep responding to me.  I would greatly appreciate it.


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