# Hello from Cyclical Frustrated Hashimoto Person



## Redcattoo (Dec 16, 2014)

Hello, thought I would introduce myself since I have come to the forum during this cycle of caring again. I am one of those people who years and years ago (has to be about 15+ years now) was diagnosed with hypothyroidism (later a Dr told me it was related to Hashi's). I go on and off my meds a lot because Dr's have never really found a combo I really felt changed my common complaints (low libido, low energy, lack of interest/depression, intolerant to cold, easily irritated by people being the main ones). It hasn't been for lack of Drs listening as I have had Drs willing to work to different end of lab ranges and a Dr who even had me on Armour thyroid.

For the most part I go through cycles of trying to seek new answers and cycles I just accept my life doesn't seem to be as great as others around me and start with all the mental excuses why. At the moment, due to I think a combination of things, I have been off my thyroid meds for about 6 months and have just revisted getting back on them. November/December in Florida was tough on me so far, I think long grey rainy days (I have always thought I am a bit susceptible to seasonal affective disorder and possibly low Vit D) and a transitional stress period at work (new boss hired) set me on a spiral of inner conflict (complete disinterest in anything with no energy and negative worry over small things). Friends and family seemed concerned, so I figured I need to at least to stabilize my thyroid again, so now I am revisiting all the options and trying to find anyone who is like me that maybe found some combination of answers to feeling better.

I have usually had TSH off the charts (you know the Drs favorite marker), below are two of the higher TSH result labs and the other markers taken at the same time.

April 2008: Lab results T4 2.87, FT3 2.68, FT4 .33, and TSH 100.0 (yes it was one hundred not a typo and yes I was functioning).

October 2011 (had been back off meds for about a year): T3 Uptake 24, T4 6.7, FT4 6.7, TSH (3rd Generation) 47.56 no FT4 done

--> sorry when I posted this I don't have the actual ranges with me that the tests noted, more an example of my extreme TSH results that most Drs find stunning that I function normally and don't feel better once treated with meds.

I have had many other tests, but haven't been good at necessarily keeping all the results. I went in today for bloodwork to see where my results are after being off my Armour for about 6 months now. I asked for them to run FT3 and FT4 so I hope the Dr approves them doing so. And yes, I have had scans done that show some odd spots but nothing of major concern. Yes, my family has some history of hyopothyroidism even though it seems to have skipped my mom.

All this said, I have tried 2 forms in the past 15 years of just synthetic T4 including demanding non-gneric. Before going back off the meds again this last time, I was on 1.25 grains of Armour for about 1.5 years. I still have never felt the meds do anything. A long time ago when taking synthoid I even doubled my dosage (claimed I lost my Rx so I could get more) for about 6 weeks just hoping upon hope to even feel hyperthyroid symptoms but really felt no different.

I imagine next week when I meet with the Dr over the labs they pulled today he is going to want to put me back on meds. Any advice on what combinations are working for anyone who like me hasn't found the right combo balance yet would be great so I am ready to discuss them. Thoughts on Triostat, Cytromel, Armour ect and what maybe to look at once the Dr is satisfied my thyroid labs are in range again would help me organize thoughts for next week.

Thanks everyone for reading my brief intro and hopefully this cycle of seeking answers will be more fruitful than my past cycles of hope and giving up have been.

And yes, I know my meds are supposed to be for a lifetime, just hate being chained to Dr follow up visits and pills when they really don't seem to change the quality of my life hence my cycles of going off meds and back on meds.


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## jenny v (May 6, 2012)

First things first, a few questions:

1. When is the last time you did labs?

2. Have you ever had an ultrasound of your thyroid?

3. Have you ever had a thyroid antibody panel done?

4. Have you ever had your Vitamin D, ferritin and Vitamin B12 levels checked?

I would ask the doctor about the above labs and make sure he's also running Free T3 and Free T4 labs (and get the results with ranges afterwards). I couldn't tell from your post how long you've actually been on thyroid meds when you were taking them, but they aren't like antibiotics, it takes time (and patience and consistency) for them to work. Good luck!


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## Redcattoo (Dec 16, 2014)

First things first, a few questions:

1. When is the last time you did labs? --- Guessing it would have been about 2 years ago since Dr can't fill my Armour Rx without me coming in and they noted it has been about 2 years since I have come in

2. Have you ever had an ultrasound of your thyroid? --- yes, I have had 2 or 3 over the course of the past 15+ years and also some type of uptake scan (forgot what it was called at the moment)

3. Have you ever had a thyroid antibody panel done? --- I think I have which is why they diagnosed Hashi's as the root cause, but don't really remember as the few lab results I actually do have in my files are at home and I am at work surfing for answers right now.

4. Have you ever had your Vitamin D, ferritin and Vitamin B12 levels checked? --- I don't remember the last time formally I did, but I know I had Vit D and B12 for sure checked and probably iron. Vaguely remember them being in the low end of normal.

I would ask the doctor about the above labs and make sure he's also running Free T3 and Free T4 labs (and get the results with ranges afterwards). I couldn't tell from your post how long you've actually been on thyroid meds when you were taking them, but they aren't like antibiotics, it takes time (and patience and consistency) for them to work.

--- I have been on and off them, usually go on them for a cycle of 1-2 years working with Dr on options and then give up because I get tired of being chained to having to go to the Dr to get Rx for a medicine that is for a lifetime and doesn't change my quality of life in my opinion. Before going off the Armour in June of this year when Rx ran out, I was on it for at least 1.5 years and Dr felt I was at full replacement and that Hashi's probably had finished destroying my thyroid so I wouldn't have to worry about the cyclical nature of Hashi's that could create fluctuations in future labs. I did ask nurse who took the blood today to ask Dr if he could approve FT3 and FT4 tests, won't really know until next week what he did run since I only had the blood drawn today and won't see the Dr (endo) until Wednesday next week.

Good luck! --- Thanks, someday I hope to find the balance of my body even though often I give up. I am pretty sure my immune system isn't only affecting my thyroid, but it is hard to find the right layers of what else is amiss.


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## Andros (Aug 26, 2009)

SUGGESTED TESTS
TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/
(Copy and paste into your browser)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

And add in an ultra-sound of your thyroid. Having a "baseline" is good and ruling out cancer is good!

Welcome to the board.

Your best bet would be to start fresh w/a current ultra-sound and the tests I have listed above and this time, I urge you to be diligent about keeping your records. We need results and the ranges of all tests. We cannot tell much w/o the ranges as different labs use different ranges.

I would be interested to know why you had RAIU (radioactive uptake) and what those dark spots were.


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## Redcattoo (Dec 16, 2014)

Andros said:


> SUGGESTED TESTS
> TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.
> 
> You can look this stuff up here and more.........
> ...


Thanks for the welcome. I do have some of the full lab results at home in a folder, just didn't happen to have them when coming across the forum surfing at work trying to figure out if I am ready to start this whole cycle again trying to feel better. I have been through this cycle several times and usually end up giving up. The two I posted were just some of the samples that include some of the more extreme results in regards to the TSH the Drs love to work from. At least my current endo understood enough to prescribe Armour to see if the added T3 through Armour (1.25 grains) would help.

I don't remember exactly what they told me about the ultra-sound, my primary Dr recommended 1 or 2 along my journey and more recently (like 2 or so years ago) the endo I am using had done one just to follow up. Every time I know the ultrasounds didn't raise any significant concerns. I am not sure why my primary Dr had recommended the uptake, maybe a combination of ability to bill my insurance, initial concern from the ultrasound, and the fact I was still complaining that symptoms were not getting better even though he was happy with lab ranges?

In my mid 40's my mind is not as good at remembering those things as to how/why from 7-8 years ago because nothing produced answers and eventually I go through periods of not caring and accepting things as they are blaming myself for not being strong enough mentally.

I know today when they drew the blood I did ask the nurse to ask the Dr to have the lab run Free T3 and Free T4 tests, hoping they will, but didn't get to talk to the Dr it was just an in/out to draw the blood before next week's appointment. I will keep your list of recommended tests, some I know in the past I have had, which I am pretty sure led to them telling me my hypothroidism was from Hashi's. I know it doesn't hurt to get them all again as a new baseline considering it has been 6 months off any medications again.

My bigger concern is being ready to help guide the choices of medicines and follow ups because I know that will be the next step. I hate having to constantly go into Dr appointments and take time away from work (this is the very busy time of year for me through April), so the more efficient I can be at each appointment the better. Part of the reason I am surfing looking for new things to try other than just synthoid (very first medicine Drs prescribed), or I forget the other brand of T4 I tried (when I wanted to see if a different T4 would do better than synthoid, it was not the gel option, it was one where the pill was shaped like the thyroid gland), or even Armour (if it matters I think I was getting the generic Armour) which I was on most recently.

I hate being chained to medicines when they don't seem to improve my common complaints even though logically I know I need to do my best to at least keep my labs in acceptable ranges even if I don't think it makes me feel better.


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## Lovlkn (Dec 20, 2009)

I'm sorry to hear your struggle through your thyroid disease process. It's not the worst illness you could have and it's fairly easy to treat so accept it and try to make yourself feel better by getting proper treatment. Yes, it is a pill everyday and occasional doctors visits and labs but honestly - not a big deal. This comes from one who had monthly labs for 4 1/2 years and monthly medication adjustments dealing with hyperthyroid until I had my thyroid removed. Being hypo is a cakewalk compared to being hyper - count your blessings.

Since you have received a diagnosis at one time or another of being hypo - you absolutely must remain on the replacement medications for life. This is not something you will heal and be done with. You are doing damage to your body by not being compliant and stopping medications.

If you have not felt improvement in your symptoms then you were not being properly replaced. It could also mean you are low in ferritin, Vitamin D or B-12. Even living in Florida you will likely need to supplement with D if you are low and since you were low previously you are likely still low. All 3 of those cause fatigue among other things and mimic low thyroid.

The way to confirm you are being properly replaced is by testing your FT-4 and FT-3. If you are taking Armour, your FT-3 will run higher than your FT-4 and should be at least 3/4 of range.

Find a doctor who will run the tests you want run and if not - keep looking till you do.


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## Redcattoo (Dec 16, 2014)

Your right. I just get tired of trying to have to feel like I need to know more than my Dr and tired of them discounting the fact I don't feel better. I guess most of my mental energy gets spent and I just don't want to have to keep researching and pushing for answers feeling like maybe I am just the crazy one and how I feel is normal. I think looking back I really don't know anymore what normal is. All I know is I wish for just a moment i didn't feel like I had to fight my emotions or energy level to feel better.


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## Lovlkn (Dec 20, 2009)

You are hypo - once you get out of the hypo zone you will be able to think more clearly


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## Vogel (Nov 2, 2014)

Lovlkn said:


> Even living in Florida you will likely need to supplement with D if you are low and since you were low previously you are likely still low.


This is true. I live in Arizona and found out I am very deficient in Vitamin D (and I'm always outside!)

Hang in there. It is VERY hard to find the motivation being hypo. The brain fog steals all of things we care about without us even noticing. I understand what you're going through. I have days where I don't have the energy to return a phone call. What has been helping for me is to just take one day, one task, one "thing" at a time.


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## Redcattoo (Dec 16, 2014)

Thanks for the support. I know I should have my Vit D checked at some point. Luckily the Florida weather has been nice the last few days. I am trying to make a point, even if only for 5-10 minutes at some point in the day to just be outside and absorb the sunlight. I walk the dogs before sunrise, I drive to work during sunrise, I work all day inside with one tiny office window, and go home after sunset this time of year because the days are so short. I know in combination with being bad and off thyroid meds since June that the shorter days (and probably Vit D) have added to my recent lack of energy, dullness, and just wanting to hide under my blankets for hours on end to shut out the world (unfortunately I can't do that between my two dogs, my husband, and work obligations).

I will update everyone once I see the Dr on the 24th and get the lab results. I hope the nurse was sure to relay to him I wanted at least my Free T3 and Free T4 included in the labs as for now my focus will be getting those two in the 75% range of the labs and then go from there if I can keep up the momentum to find the solutions I haven't found in the past.


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## Airmid (Apr 24, 2013)

Lovlkn said:


> Being hypo is a cakewalk compared to being hyper - count your blessings.


You know I very rarely disagree with you. Perhaps it's having been diagnosed with Hypothyroidism via Hashi's over a decade ago. Perhaps it's from the numerous disorders and health defects caused from being so under-treated. Perhaps it is now facing the two heart blocks and other conduction disorders of the heart not to mention all the other physical symptoms. Perhaps It is living in a slow fog at this point that takes away a significant portion of my mental prowess that I use to have. I know what I use to be. I know what I am now.

Perhaps I should count my blessings that I am still alive.

Yes, I may have symptoms of having both Hashi's and Graves and more then likely if anyone would care enough to do a blood test I would test for different antibodies. But I wouldn't call anyone with hypothyroidism of any kind lucky. Yes you die slower. Yes your heart doesn't just quit and you aren't in for instant death. But so much of your life is stripped away piece by piece. Slowly, as though it was done with care.

Joy, memories, well-being, happiness - all slowly peeled away as though it was nothing to begin with. All gone as you stare at anxiety, hair loss, weight gain, fatigue and the holes where all those memories should have been.

I wouldn't wish this on my worst enemy.

Yes it is slower, more insidious. It clings to you like a good friend that lacks remorse. Layers of you are just gone and you feel unable to retrieve them.

OP - I would be very careful of Vitamin D reports especially if you have lived at your location for quit a while. We humans tend to adept and want varying levels of vitamin D based on our surroundings and genetic makeup. There is little that we know really of the appropriate levels of Vitamin D for each race, along with basing it in locations that they have been for generations. My grandmother was depressed with a good vitamin D level while my mother just underwent a cornea transplant and is considered very low on vitamin D. She is a lively woman who works daily with children without issues and holds out hope that her her vision improvement while continue while she preps for the next transplant (her other eye). Vitamin D isn't a cure all and if you are low in it there may be genetic factor, other biological causes or just due to poor thyroid function not allowing you to absorb the maximum amount. I hope your doctor results tomorrow shed more light on this.


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## Redcattoo (Dec 16, 2014)

Airmid said:


> ..... But I wouldn't call anyone with hypothyroidism of any kind lucky. Yes you die slower. Yes your heart doesn't just quit and you aren't in for instant death. But so much of your life is stripped away piece by piece. Slowly, as though it was done with care.
> 
> Joy, memories, well-being, happiness - all slowly peeled away as though it was nothing to begin with. All gone as you stare at anxiety, hair loss, weight gain, fatigue and the holes where all those memories should have been.
> 
> ...


You took some of my thoughts and said them well in regards to joy, memories, well-being, happiness all slowly peeled away .... so slow you learn to adapt and cope such that you believe that is just life.

You almost come to accept you will be one of those people that may never be happy or never full of energy or that you can only eat small amounts while exercising like a maniac just to maintain a normal weight. You learn to believe it is your own self-thoughts and that you are just lazy. You believe it is your own self thoughts which is why you have issues and this becomes a cyclical frustrating cycle. It is worse because when you look towards hope life could be different and that it is possible these issues are not only in your mind but in your body, so you seek help only to find out after a year or so that you don't yet seem to come away with new answers.

I had no surprises at my Dr's visit this Wednesday. I don't have the lab results with me (hope they will be posted on my patient portal after the holiday season) but my TSH was up in the upper 60's and my Free T4 was below reference range (I think something like .6). They didn't do my Free T3. One of my cholesterol's was higher than she liked, but not anything of immediate concern and we will monitor to see if it shifts a bit once my thyroid results are properly stabilized.

I already knew that would be the results after being off meds for about 6 months. They put me back on my 1.25 grains (75 mcg) of Armor that I was on previously and we will run some more tests in 7 weeks. We will do a more comprehensive series of tests next time which will include the Free T4, Free T3, Vitamin D, Ferritin, ect. I told her I wanted those to help me get a bigger picture of everything and that I wanted to work towards getting Free T3 and Free T4 into the upper 75% of reference ranges before I work on other things that may be out of balance.

She felt my throat and looked at the notes on the past scans of my thyroid I had confirming that they still feel there really isn't a concern there. She did agree that potentially there will be other things I will need to look at once we get my Free T3 and Free T4 into the 75% end of reference ranges, but that we should first stabilize this known issue to find out what, if anything, it helps. It is nice that my Dr at least listens and is willing to work with me to run the tests I want as we move forward seeing if I can unlock any new answers.

My life has always been what I call an onion .... I have always felt most things I face have had numerous layers and peeling them away has not always been easy which sometimes stops me from peeling away to get to the center of it all. If I am lucky maybe I will find the center this time through, but I am guessing it isn't just my thyroid, I am guessing my body already stole my mental ability to truly feel energized and happy because it is so used to coping with the opposite. I am also guessing that since my immune system attacked my thyroid that it probably attacked other things and that I am only lucky in the fact my body/mind has been strong enough to adjust instead of shut down, which is what makes finding the answer harder.


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## Redcattoo (Dec 16, 2014)

Okay, here is a bit of lab history from my current Dr, which based on what they sent I started with the Dr December 2011. I don't remember if I was on meds at the time as it is possible my primary had been prescribing them and this was my attempt for more insight as this Dr is an endocronologist.

December 2011:

TSH 5.46 (ref range .4 - 4.5)

Thyroglobulin Antibodies 120 (ref range <20)

Thyroid Peroxidase Antibodies 138 (ref range <35)

Prolactin 20.4 (ref range 3 - 30)

March 2012:

TSH 1.36 (ref range .45 - 4.5)

Free T4 .97 (ref range .82 - 1.77)

Triiodothyronine Free Serum 4.5 (ref range 2 - 4.4)

October 2012:

TSH 1.22 (ref range .45 - 4.5)

Then I didn't go back until Dec 2014 and was off meds for about 6 months before this:

TSH 64.18 (ref range .4 - 4.5)

Free T4 .6 (ref range .8 - 1.8)

Other noted lab results from this most recent bloodwork that were out of range: total cholesteral 201 (ref range 125 - 200) and Alkaline Phosphatase 32 (ref range 33 - 115)

So for now I am on 1.25 grains (75 mcg) Armor thyroid and will retest in February which will include testing Free T3, Ferritin, and Vitamin D along with the normal labs and a few others.

Hope this round I can find some hope the medicines are helping bring me back to what a call an easier life where I don't have to mentally fight myself all the time over being tired, being irritable, being dull, trying to remember simple things, and not worrying about what I eat every minute and maybe feeling warm living in Florida.


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