# 7yrs of synthetics, no relief of symptoms, what to do?



## BatMan (Oct 2, 2013)

Because my TSH, free t3 and t4s are all in range due to the thyroid synthetics my doctors are saying Im well.

My hair is thinning out fast, my skin gets dry, my eyes tongue skin stings/itches, i have anxiety then i get depressed (which they now want me to take meds for), my joints ache, i get too hot then too cold.

I feel lost and alone because my doctors refuse to acknowledge my symptoms because my numbers are in "their" range.


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## jenny v (May 6, 2012)

Do you have copies of your labs, with ranges? Their "normal" range might not be where you feel best, but we can't really tell without those lab results.


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## BatMan (Oct 2, 2013)

Sorry but you wont be able to tell how I feel by my ranges, a person feels how they feel. If that makes sense.

Not looking for advice on whether I am in range, have been down that path before and everything is in conventional medical ranges.

The issue is being in range doesnt help me, in fact Ive never had any change in my symptoms since starting hormone medicine.


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## Lovlkn (Dec 20, 2009)

Hi Batman,

I'd still like to take a look at your labs.

If you are unhappy with your treatment - find a new doctor. It took me 6 doctor post TT before I found one willing to dose me properly.


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## BatMan (Oct 2, 2013)

these are the only numbers i have access to

Thyroglobulin Antibodies 92 (< 60)
Thyroperoxidase Antibodies 140 (< 60)

TSH 2.6 (0.30 - 4.00)

Free T4 19.1 (10.0 - 20.0)

Free T3 4.1 (3.0 - 6.5)

in the mean time, what else should i look at trying, perhaps whole thyroid?


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## BatMan (Oct 2, 2013)

Posted the numbers above


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## StormFinch (Nov 16, 2012)

Well there's part of your problem right there. Although your FT4 is at the top of the range, your FT3 is near the bottom. Typically we truly don't feel well until it's at 50 to 75% of the range, which for you would be 4.8 to 5.6. It looks as if you're not converting properly. I'd bet dollars to doughnuts your Reverse T3 would be sky high with all that T4 in your system. Personally, I would suggest starting out adding some T3 to your current replacement and dropping that back some.

Have you had tests ran for ferritin, vitamin D and B12? We are notorious for having low iron and D even with supplements and a proper diet, and some of us are also low in B12. Iron typically will be the cause of the hair loss and joint aches, vitamin D deficiency can cause depression, low skin moisture and joint aches, while B12 can cause problems with the tongue and depression. If it were me, I'd find a doctor willing to run a full vitamin and hormone panel since a thyroid condition can throw off so much of both.


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## BatMan (Oct 2, 2013)

thank you.

i was concerned i was converting synthetics well, but the doctor said all these numbers are in range.

she wont give me t3, in fact where i am if u dont fall outside the numbers they cant.

to see someone to prescribe whole thyroid also costs a fortune as no main stream doctor will.


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## StormFinch (Nov 16, 2012)

Where are you located? I might be able to find you a list, or at least places to look, for a good thyroid doctor. Mine ignores the TSH and is working to get me where I want to be in the FT3 range, and although he doesn't particularly like to prescribe Armour for religious reasons, because I came to him doing well on it he's continuing the scrip.


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## BatMan (Oct 2, 2013)

Down under


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## StormFinch (Nov 16, 2012)

Cool, try this list; http://www.thyroidchange.org/patient-recommended-doctor-list-australia.html and here's Mary Shomon's Top Docs Australian list; http://www.thyroid-info.com/topdrs/australia.htm plus the Australian subforum; http://forums.about.com/n/pfx/forum.aspx?folderId=14&listMode=13&nav=messages&webtag=ab-thyroiddrs Most of the posts on this one are kind of old but you may be able to track the down the docs mentioned.

Good luck.


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## BatMan (Oct 2, 2013)

I meant down under in NZ


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## StormFinch (Nov 16, 2012)

Lol okay, try these:

https://www.facebook.com/groups/ThyroidChange.International.Doctor.Listing

http://groups.yahoo.com/neo/groups/NaturalThyroidHormones/info

http://www.thyroid-info.com/topdrs/newzealand.htm

Two are international groups that you'll need to join, and the Top Doc directory lists one physician for NZ.


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## StormFinch (Nov 16, 2012)

Also, try some of the groups on this page; http://www.thyroidnz.org/discussion.php


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## BatMan (Oct 2, 2013)

thanks storm, none of those help find a doctor sadly. the ones i can see are holistic and they charge too much for me to be able to see thme :-(


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## StormFinch (Nov 16, 2012)

You would have to ask the members of those groups BatMan. I know a lot of doctors that "get it" are holistic, but sometimes you'll find an MD if you keep asking around. Typically in America they'll be known as integrative or regenerative medicine doctors. We also tend to look toward Osteopaths or Internal Medicine doctors when our Endos seem clueless. I'm not sure however if NZ has those classifications. I do understand not being able to afford a Naturopath though, and those in my area tend to make me nervous because they aren't always trained properly.


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## Lovlkn (Dec 20, 2009)

If you cannot get then to prescribe T-3 , then try some selenium. I did a very short trial of selenium prior to beginning Cytomel and my FT-3 did go up a bit.


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## BatMan (Oct 2, 2013)

what exactly does selenium do? i have heard of people using it before.


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## BatMan (Oct 2, 2013)

I went back to the doc today, I said I was unhapppy that in 7 years none of my symptoms have gone. She said my numbers are good, sigh. I then mentioned about using whole thyroid, her response was that they dont know safe it is. I said they had used it for decades before the synthetics. She then said how do we know what damage it has done. I feel like its time to give up on this doctor.

On the plus side Im getting all my bloods retested.


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## Swimmer (Sep 12, 2013)

I'd change doctors, maybe you want to interview the doctors first to learn about their way of thinking. Be sure and right a yelp review on them so others know they won't prescribe dessicated thyroid  Hope you get help soon!


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## Swimmer (Sep 12, 2013)

Here is the link to part of the naturopath recommendations (based on Ray Peat metabollic blueprint) I have not included all of the info here -- but lots of good info: http://thyroidboards.com/forums/topic/9349-metabollic-blueprint-dr-ray-peat-phd-anyone-doing-this/?hl=peat


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## BatMan (Oct 2, 2013)

thanks for that. i do sleep 8-9 hours most nights, if i sleep less than 7 i cant function. even after 8-9 hours i just want to lie in bed. im 35kg over weight.


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## Prolixity2013 (Nov 8, 2013)

BatMan said:


> TSH 2.6 (0.30 - 4.00)
> 
> Free T4 19.1 (10.0 - 20.0)
> 
> ...


Pardon me, but your numbers suck! Your TSH is too high. My endo keeps my TSH from 0.8 to 1.11 and that is where I feel best. Other people need it lower. Before I got to see someone who knew what they were doing, the doctors kept my TSH between 2.4 to 2.75 and told me that was normal. It is normal for someone who is euthyroid without medication and does not have thyroid disease.

http://www.thyroidmanager.org/chapter/hashimotos-thyroiditis/#toc-therapy

Take this info to your doctor. This website is the definitive info on thyroid disease. The website is loaded with info on all aspects of the disease and treatment. Click on the "therapy" link and after the diagram you'll see the sentence, *"The dosage of thyroxine should normally be that required to bring the serum TSH level to the low range, such as 0.3 - 1 uU/ml."*

It goes on to state the typical doses for women and men. That varies though with each person, but will give you an idea for a medicinal range for Levothyroxine.

With this info you can see your TSH is too high and that's why you're suffering. Sorry you've got a dumb-dumb for a doctor. Believe me I know what that's like after seeing too many of them, including one terrible endo who extremely overmedicated me and almost killed me.


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## BatMan (Oct 2, 2013)

she told me my reading prior to that was unstestable as i was taking too much thyroxine and i was off the readble limit (i have to admit i did feel edgier)


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## BlindMag (May 17, 2013)

I feel your pain, it sucks when your doc won't listen. That's good you got another blood test. I think if this one comes back with "everything's fine!" I'd try finding a new doc. Decent lab ranges don't help when you feel like crap. 
If all else fails, you could try an elimination diet to see if any foods are contributing to fatigue and weight gain. It's kind of a pain, but at least it's something you can try on your own while waiting for doctors to help. 

Maggie


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## BatMan (Oct 2, 2013)

Ive had some new blood work done

TSH: 3.1 (0.3-4.0)

Free T4: 14.8 (10-20)

Free T3 4.7 (3.0-6.5)

Antibodies are elevated as usual.

So what should I ultimately be trying to get these figures too?

Im also getting a test for adrenals.


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## BatMan (Oct 2, 2013)

Is it worth trying upping my meds from 1050 a week to 1200? When i was taking 200 a day i was hyper and my TSH was unreadable at 0.0.


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## CA-Lynn (Apr 29, 2010)

Get copies of all the bloodwork and then take it to a new endocrinologist.


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## BatMan (Oct 2, 2013)

Im going to see another doctor, Ive come to the conclusion I need to see someone who is holistic and focuses on my symptoms not my lab results.

Im also losing weight, have lost 25lb in 5 months. Not huge and I have another 50 to go, but Im doing ok considering.

I was wondering is someone could help me interpret those last results and if there is anything I should try with a new doctor, ie is my T3 too low (even though it falls in the doctors range). Im not sure where to go from here, very tired of a tired life style.


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## Airmid (Apr 24, 2013)

You're TSH has gone up while your T4 has dropped, meaning there's a good chance you could need more hormone. It seems like a lot of people on this board seem to feel better when their thyroid is almost suppressed. I'm also assuming you have Hashi's with the antibody issue and it can cause dosing issues as you still have a thyroid doing things in there. The good news is your T3 is up so perhaps you don't have problems converting.

Internal MD's can also be a good choice. That's how I found out i had issues to begin with and not just with my thyroid. They are a bit more specialized then regular GP's and seem more keen to catch problems.

I wish doctors didn't think hypothyroidism was so easy to treat and just go by lab numbers as though they were the end all be all. Obviously, just from the people on this board, things aren't always as easy as that and you deserve to have your symptoms addressed.


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## CA-Lynn (Apr 29, 2010)

You need a doctor who is experienced and treats using the "if it looks like a duck, walks like a duck...." model.

My belief is that only an endocrinologist has the experience to do that. But you need to find the RIGHT endocrinologist who specifically deals with thyroid [as opposed to diabetes] and doesn't treat on the basis of numbers. Might take a while.


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## Swimmer (Sep 12, 2013)

There's dessicated thyroid made in new zealand -- www.pharmaceutical.co.nz and their phone is 09-442-1727 can you call and get a list of docs using it near you?


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## Dolly (Apr 24, 2013)

You can also try calling local pharmacists and asking them if there are any doctors that they are aware of that is using a combo of T4/T3 or natural thyroid.....most pharmacists at smaller pharmacies would be able to tell you who is precribing an NDT or Cytomel.


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## Dolly (Apr 24, 2013)

CA-Lynn said:


> You need a doctor who is experienced and treats using the "if it looks like a duck, walks like a duck...." model.
> 
> My belief is that only an endocrinologist has the experience to do that. But you need to find the RIGHT endocrinologist who specifically deals with thyroid [as opposed to diabetes] and doesn't treat on the basis of numbers. Might take a while.


Yeah, I am currently switching from an Internal Med Specialist who didn't feel comfortable continuing to tweak and adjust my meds. I called every Endo in the area before I found one who is taking on new patients, accepts my insurance, AND uses T4/T3 therapy in thyroid patients. I can't get in until July, and will ask him THEN about the possibility of switching to an NDT, but at least I know that if all else fails, he should feel comfortable tweaking my Synthroid and Cytomel level to get me into the proper ranges.


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## Danniswirl (Feb 23, 2013)

Good advice Storm!! I would bet he is not converting properly. You will need to get an Ft3, and Reverse T3 (the same blood draw) and then I the ratio. Batman you will have to fight for your health. There is a Rt3 yahoo group you should google. It will lead you in the right direction. I wish you a speedy recovery. Start researching!


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## BatMan (Oct 2, 2013)

Hi all, thanks for the support and advice.

Tried asking the pharmacist who prescribes WT or t3 and they said they couldnt tell me :-(

Doctor said I cant get RT3 unless my other results suggest to.

Im bed bound most days, Im finding it hard to fight this. The more synthetic t4 they throw at it, the worse my anxiety and irritability gets, along with a strangely tired but on edge feeling. Im a bit hesitant as I already take 160mcg per day and I feel HORRIBLE ! i was up to 200mcg per day about 2 years ago and they pulled me back because my TSH was under 0.00 (unmeasurable), I was also feeling horrible at this higher dose.


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## Pili (Mar 29, 2014)

BatMan, did you have luck finding someone to prescribe T3 or anything else?

I've had really bad experiences with endocrinologists and I agree about the labs, I have old prescriptions for T3 and went back on it but I have to find a GP to prescribe it.

I had pretty severe Hasjimoto's disease and going bald (as a woman) was not a side effect of t4 (synthetic ) I was willing to live with .

I've been tempted to get cynomel from Mexico, but I am concerned about tainted meds. My hair grew back and stopped coming out after T3, everything else is better too. Anyhow, they need to offer it in more doses, I either have too much or not enough and they are tiny pills. I hope you've had some luck since Jan.


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## Swimmer (Sep 12, 2013)

Batman, can you research and find a good natural doc in your area; one that addresses thyroid issues? Also, Natural dessicated thyroid (armour) has t3 & t4 in it, it's not for everyone, but if the synthetics don't help you feel better, then there are a few dessicated thyroid options that might help, one being Westhroid and I don't recall the other, but think it's made by same company as Westhroid.


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## BatMan (Oct 2, 2013)

Great news, I found a new doctor and I start dessicated thyroid. Here its in grams not the same as armour, but its equivalent to my t4 dose as per the pharmaceutical companies guidelines. We also did new blood tests, this is on my synthetics. Looks to me like my t3 was slightly low in comparison to quite high on t4 even though my tsh was still quite high. That was on 1200mcg per week. A bit nervous about taking this new medication in case I get a bit wired from the t3 that im not use too.

Free T4: 17.8.0 pmol/L ( 10.0 - 20.0 )
Free T3: 4.3 pmol/L ( 3.0 - 6.5 )

TSH: 3.5mIU/L ( 0.30 - 4.00 )
ThAb: 512 U/mL ( < 60 )


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## Pili (Mar 29, 2014)

Please update this board as your symptoms change with the new treatment--hopefully an improvement. I saw an internist who discovered that my t3 was low (in addition to hashimoto's, that I've had for a long time). She put me on Armour in 2008 (2009) and the hair loss slowed down then Armour re formulated and I couldn't get it, just a bad coincidence really.

I had to switch practices and they put me back on synthetic T4 only, though I asked for cytomel t3 they refused to try it. my hair started coming out again and I felt awful-labs normal but they didn't test Ft3, I kept seeing residents-- ARGH! I marched in for my next appointment and in the lobby, rather loudly, I announced, "baldness is not a side effect that I'm willing to live with" then the Dr in charge of the practice brought me to a room and told me he would prescribe generic cytomel, however he really didn't know how to dose it. Due to changing healthcare I've seen a couple doctors since then and hope the one I'm seeing soon will just give me what I need. I'll monitor my heart, fT3, etcetera. I stopped the synthroid and am slowly increasing T3 as the half life wears down on T4 (only three days so far). I may have to go back to Armour if I can't get a doctor to prescribe T3 only, but at least I know they're not going to pull it off the market. I wish you well and would like to know how you feel with the addition of T3, and a natural product. The smell is pretty awful but it was the first step to understanding my problem (I'm a stubborn and abnormal thyroid patient). I mentioned somewhere else on this board that when a doctor finally tested my thyroid and diagnosed me my TSH was 119 and my heart rate 50 bpm, talk about feeling like hell, but it was 5 months after my son was born and the OB I saw weekly kept telling me the symptoms were normal postpartum. I will always go with my instinct now (16 years later). Well thanks for posting Batman--and I hope we all get the treatment we deserve, and someone who listens.


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## BatMan (Oct 2, 2013)

will do, ill see how it goes. i feel blessed to have found a doctor who listens and is interested in how i feel not my "numbers"


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## BatMan (Oct 2, 2013)

is it normal to feel a bit anxious, kind of like having a bit too much coffee, when you first start taking these dessicated meds?


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## jenny v (May 6, 2012)

I had that at first when starting Armour and each time I have a dose increase, I have a few "jittery" days. Mine are usually gone within a week or so.


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## Swimmer (Sep 12, 2013)

Hmmm, I don't know, I guess my dose started so low that didn't happen to me.


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## BatMan (Oct 2, 2013)

its so expensive.

not sure what my blood work should be if im optimal?


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## Pili (Mar 29, 2014)

If you drink coffee that will increase the jitters, I grind my own beans and had to switch to half caff, if I can I cut it out and have it occasionally, but that can be hard. If you are slightly over medicated it may be best for you to take less one day, not sure, sometimes going down to the next manufactured dose will not be enough and the hypothyroid symptoms return. If your TSH is low normal and the doctor wants to give you less meds you might say that your "normal" needs to be at or below 1.5 TSH or 2.0, if mine is over 2.0 I feel sick. If you have any history of anxiety you will fell it amplified at very low normal TSH levels, hand tremors are a sign that you're over medicated, but like I said try having less one day and take note, you might try on your own and keep track of your heart rate regularly. Just saying, once a doctor thinks you might be getting too much they generally put you on the next lower dose, which prolongs that guinea pig phase that is no fun. I don't remember the half life of Armour??? You'll feel better once things level out and you figure out how much less per week you need (if at all).


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## Swimmer (Sep 12, 2013)

Armour Thyroid is priced really well at Costco - do you have one near you?


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## jenny v (May 6, 2012)

My Armour is super-cheap at Walgreen's--it's $2.34 a month with insurance and would be $17 without it. What medication are you on? I thought Armour was relatively cheap, esp. in comparison to the synthetics.


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## BatMan (Oct 2, 2013)

the equivalent down under is $50 a month.


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## BatMan (Oct 2, 2013)

day 10 on the dessicated thyroid, starting to lose the jitters and feels like its settling down a bit.


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## jenny v (May 6, 2012)

That's very common. Hang in there a few more days and the jitters will probably be completely gone.


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## BatMan (Oct 2, 2013)

its on odd feeling, like i am hot, like nervous heat furnace is turned on haha. so hard to explain.


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## jenny v (May 6, 2012)

I call it my "internal tremors". It's like the shaky/jittery feeling is coming from deep within my body and radiating outwards.


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## BatMan (Oct 2, 2013)

i think im starting to get use to it. i skipped one day and now back on 3 days. ive also had to take a lot of sedatives. but hopefully now i can ride it out for a few more weeks then get retested


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## anxietysoldier (Apr 2, 2014)

What sedatives do you take? If you don't mind me asking?


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## Pili (Mar 29, 2014)

Anxietysoldier, Are those your labs and supplements or did they test melatonin levels, etc? The type is in gray so it could be from another Hashimoto's patient. Your TSH is too high you must feel bad?? I'm best at or below 1.0 and feel like normal now that I'm off levothyroxine! I felt better as soon as I stopped taking it (end of March). I truly believe some people are either allergic to synthroid or it does nothing to relieve symptoms. I told a new doctor that it makes my hair fall out and she didn't take me seriously--said "that could be anything," as if I don't know my own body after so many years. The first time I switched off synthroid (in 2008) my hair stopped falling out almost immediately, and then I was put back on due to the reformulation of Armour thyroid. I think this synthroid "side effect" of hair loss really means that one's body does not react well to the medication and one is still hypothyroid despite the labs. Still hunting for a doctor to work with me and prescribe T3. In the meantime I have medical allies and I monitor my heart rate closely, I have to take different amounts over the week to add up to what I actually need as they do not make it in a wide variety of doses like they do synthroid and the generics.


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## BatMan (Oct 2, 2013)

it really depends on the doctor to be honest with what the give me.

i think my body must be getting too much t3 or something with current dose of whole thyroid as im having extreme panic attacks without any thoughts for about 6 hours after i take the medication in the morning. i feel wired.


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## Pili (Mar 29, 2014)

There is not a lot of T3 in Armour, so that means your body does not have trouble converting t4 to t3 and I don't think one settles--maybe it's too much Armour for your body. At least your body is converting the hormones. Yeah, if you're not going through anything traumatic and don't usually have panic attacks then you're probably over medicated. Have you had your blood tested since being on Armour or this latest dose? You've cut out coffee or caffeine? If not do it because it makes the anxiety and/ or panic much worse.


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## BatMan (Oct 2, 2013)

Yep dont take any stimulants. Havnt had my whole thyroid bloods tested yet.

I do take lexapro and im wondering if the extra hormones now are interfering with that, which happened when i took prednisone once, exact same feeling.


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## CA-Lynn (Apr 29, 2010)

I'd look to the Lexapro as being a strong contributing factor.

Don't go off it without consulting your physician. This was prescribed by a psychiatrist, right? [People on the board know I have a vehemence for any non-psychiatric physician prescribing this or any anti-anxiety or mood altering drug. And with good reason.]

Google: rxlist.com lexapro


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## BatMan (Oct 2, 2013)

no it was given to me due by my GP for my anxiety and chronic fatigue, which i personally think is more related to my hashimotos flaring up and exhausting my adrenals, so i would get super anxious and then get super fatigued.

hope that makes sense.


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## Pili (Mar 29, 2014)

Batman, I have not had Lexapro but my experiences with SSRIs were awful, just more weight gain, feeling flat or dizzy, and horrible side effects. I take Wellbutrin and for me there are no side effects, it is in a separate class than the SSRIs. Psychiatrists know more about thyroid problems and interactions than most doctors. Good luck


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## BatMan (Oct 2, 2013)

well i was told to try the old TCA doxepin due to my pain, sleep and anxiety issues, so im considering that. hopefully if anything the sedative effects will help me sleep. i was taking one of those Z sleep meds, but long term it was just getting worse and having to take more of it.

i think ive dived in too much with the t3 of the whole thyroid and its over stimulated my adrenals or something or interfered with the ssri.


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