Re: VERY long intro - Hashi's, Armour and Synthroid

[Guest guest]

Hi ,

I'm 43, in Dallas County. You sound similar to me in regard to

Synthroid and lingering symptoms. It does nothing for me either. I got started

on it at age 14. I have a family history of thyroid disease, high BP, and a a

bunch of other stuff.

For a while Levothroid worked for me, but after a time I started itching and

breaking out in hives, so just yesterday, my doctor switched me to 60 grams

Armour. I went to the Parkland Family clinic and saw Dr. Patel.

I haven't started taking it yet, because I have to go get it from teh pharmacy

today, but I do hope you feel better soon. It can feel like a living hell when

your thyroid is out of whack.

>

> Hi everyone;

>

> I'm , 49, and I live in Cameron County.

>

> I am desperate. I have spent the past week reading through almost every post

in several other forums, and was directed here in the hopes that I might get

some local referrals (of course, 'local' and Texas mean hundreds of miles away),

and while I realize I am no where as aware of specifics of any tests done on me,

I have very little ability to read labwork. Please be understanding. A (very

long) backstory:

>

> I am 49, female, no children, lifetime non-smoker, rarely drink, no family

history of hypothyroidism, nor high blood pressure, just the typical

one-day-I'll-be-diabetic-because-it-runs-in-the-family...I have had a doozy of a

time losing weight; in the past year it's gone up close to 20 pounds, and it's

not due to my eating habits. I follow a general South Beach. I'm 5'3 " and

usually had been in the healthy for me 130s. Now I cannot get below 150, and

this morning I was 156.

>

> About 20 years ago, I got hit with a major case of mono which landed in my

throat, attacked my thyroid, gave me a temporary case of hyper, and since then

my thyroid has been on a rollercoaster. In the interim, I have been diagnosed by

one Nurse Practitioner with having Chronic Fatigue (but all following MDs

poopooed it as a 'fad' disorder), Fibromyalgia by another NP (I had all the

tell-tale 'points' fire back), again, poopooed by MDs, and when my sister, who

is a Nurse Practioner, told me which thyroid tests to ask for, I have spent over

7 years here in TX where we moved to 9 years ago going from endo to endo to get

my thyroid checked.

>

> All said the same thing; I'm in normal ranges. Yet I knew I wasn't. And when I

had faxed a series of labs to my sister, she mentioned that while I WAS in

normal ranges, they wavered drastically from lab test to lab test. One test

would have me at normal-low, the next series of tests done a few months later

would be normal-high. She reminds me that she's 'simply' a Nurse Practioner, but

even to her that doesn't sound right. I had every single symptom of hypo, and

had focused on Hashi's, which - again - many endos dismissed saying that hypo

isn't autoimmune, and since I had no huge goiter hanging from my neck, I didn't

have it since my bloodwork always came back in the normal ranges.

>

> I managed to find yet another Nurse Practioner who scheduled a thyroid

ultrasound a few years ago which resulted in the almost casual 'yeah, you have 4

small nodules on your right lobe; nothing to worry about, the largest is still

too small, everyone has them'.

>

> I pretty much gave up. I was always tired, had NO libido and was not yet

peri-menopausal, my hair was always clogging the shower drain, I ended up with

vitiligo (which does NOT run in the family), I could not lose a single pound

even though I eat right, exercise (I 'run' half marathons, and weight train with

my husband, and am a big fan of yoga), and my mind is cloudy all the time.

Forget about a decent night's sleep...

>

> About 3 years ago, I was referred by a work colleague to her DO which finally

added a thyroid antibody test (sorry; not sure about the correct terminology) to

the regular thyroid bloodwork. She seemed almost apologetic when she informed me

that yes, I was hypo, and that it was due to Hashi's. I HUGGED HER. She started

me on 60mg of Armour, and the changes were almost instantaneous. At least my

energy came back and I wasn't going on in a fog. My sleep still was horrid, my

GI tract only 'worked' once a week, and I still could not lose any weight. But

that lasted only about a year when all the typical hypo symptoms started slowly

returning. With my nagging her, she increased my dose to 90 mg, and again, I had

a respite from symptoms, but again, after another year, back to having my

husband ask me if I forgot to take my meds. I also somehow, after a lifetime of

low blood pressure and NO family history of either high blodd pressure, or any

cardia issues, now have hypertension and was placed first on lisinopril, which I

HATED, and then switched to losartan, but still my BP is borderline high. And

ONE test showed that I had high cholesterol, and I was placed on Simvastatin,

but I stopped that on my own since I really didn't think I needed it. I was also

placed on super-high doses of Vit D but somehow that introduced me to the

wonderful world of kidney stones....

>

> I recently switched from the DO (she had staff changes and moved her office)

to a wonderful Nurse Practitioner (what else), who ran the same tests, but who

also scheduled another thyroid ultrasound. Regular bloodwork came back with

normal cholesterol levels (I had stopped my cholesterol meds months ago, so

either that earlier test had a 'blip', or my diet changes were working). I also

had a 'calcium cardiac' (again, not sure of the term; been in a major fog

lately) which showed pristine blood vessels around my heart - my score was a

happy ZERO.

>

> This time, the results of the ultrasound came back, not '4 small nodes on the

right lobe', but '...several nodes on both lobes and the isthmus...', even

though, again, the largest of the nodes was still too small, I suppose, for a

biopsy. What freaked me out was that there was no specific number of nodes, but

SEVERAL, and the NP could easily palpate what she called my 'bumpy thyroid'. She

referred me to yet another endo.

>

> This endo, while I do like her, read through my labs sent by the NP, told me

that Hashi's is genetic, demonized Armour (I had been switched to Synthroid when

Armour went through their reformulation and the pharmacy ran out of Armour),

placed me on 100 mcg of Synthroid, and sent me on my way.

>

> I am in hell.

>

> I am not a person who did well on Synthroid when Armour was reformulating

their reformulation, and my endo does not want me on Armour, opting that if I

need it, she'll add Cytomel to my synthroid. She also told me that being

naturally dessicated, armour has a specific shelf life and you never know how

old the meds are and what if you get a batch that is not 'new'? (I talked to my

pharmacist who assured me that it was a federal reg that all meds have a

specific shelf life, and while Armour's is a year, the pharmacy ditches anything

over 6 months. They do the same for Synthroid as well. And it's a busy Walmart

pharmacy, so they go through lots of prescriptions for Armour).

>

> I have been on Synthroid since 11/7 (it's now 12/19), and my husband is

convinced that I am not on anything. My face is puffy and I look and act as if I

have just woken up, and just as cranky though I usually am a pretty easy-going

person. I am shedding like my sheltie, I am achy. I have no appetite, but have

not lost any weight. As a matter of fact, I have gained 16 pounds in the past

month and a half- and it was a steady quarter to half pound increase per day -

until this past week when I have gained over 5 pounds in a week. It's not

because of the holidays (it's just me and my husband, so we don't have all the

holiday party/visiting family since they're all in the east coast, and I don't

have much of a sweet tooth), nor my age (grr - I hate that one), or my cycle (I

still have my period though I'm on a very low dose of BCP)

>

> No one in my family has any of these issues (hypo, Fibro, CFS, hypertension).

I have three sisters and a brother (our ages are 49, 48, 47, 46, and my brother

is 43) and we are all almost embarassingly honest and open about sharing any

medical issues.

>

> I have placed a call to my endo about my synthroid issues, but am pretty much

sure that she will not switch me back to Armour, or use the reasons listed above

for my medical complaints (age, diet, exercise, though I do not think I am old,

I eat well and exercise 4-6 days per week, and have a marathon that I plan to

complete in February).

>

> Can anyone offer any insight into what might be causing the almost

not-on-medication issues? When I was first placed on Armour, I felt almost

instant changes, and I realize that Synthroid can take weeks, even though I

switched from taking Armour to taking Synthroid with no gap in medication.

Although in a way, this does not make sense; how can switching from one day

taking Armour to the next day taking Synthroid mean that I still need to wait

weeks for any discernible changes?

>

> Does anyone have any suggestions as to anything I can do or ask my endo about

for my contant exhaustion, etc? If she wants me on synthroid, I will stay on it

even though I really don't like it. At this point, after all these years I have

almost stopped trying to fix myself since nothing seems to work, but this is

affecting my life. And while I think it might be related/caused by my Hashi's,

but this hypertension is also worrying me. Again, none of my sisters have this

issue. I am the shortest of my siblings, yet the heaviest of my sisters. My endo

says that I may simply have 'stiff' blood vessels, but again, my lifestyle and

family history does not lean towards artheriosclerosis. Due to the family

history of diabetes (we're Puerto Rican, so it's almost a given), blood tests

have been done on an annual basis, and that seems to be the only thing that is

normal. Go Figure...

>

> In spite all of all my wanderings to find ANY doctor that would listen to my

shopping list of symptoms and not look at Hashi's, or overlooked my bumpy

thyroid, I am still a newbie when it comes to understanding what exactly is

happening to my thyroid. I thought that synthroid and other t4 meds were

prescribed for the 'typical' hypothyroidism, and that conditions like cancers,

autoimmune, etc., where the entire gland is failing (that is how my endo

described my thyroid, which completely freaked out my husband who accompanied me

to my office visit), that either a large dose of T4 is prescribed (so there is

some that can be converted to T3), or a combination is prescribed (hence my

initial prescription of Armour).

>

> One thing (actually, the only) that bothered me about my old DO was that she

was not really big on re-testing me every few months. I would have an office

visit, she;d ask me how I was doing, hmmhmm me when I mentioned that I was still

tired, no libido, GI tract really lazy, etc., then tell me to keep taking my

regular dose. I really thought that I was expected to stay feeling the same way,

which was still better than when I was on no meds and feeling like I had just

woken up - all day.

>

> The problem I had/have with synthroid is that I feel like a pile of poo. My

husband, who is great at noticing if I don't feel welll, has commented on more

than one time that he is worried that I'll fall asleep at work, I can't remember

simple lists of things to do, etc.

>

> I'll just keep bugging my new endo to see if she thinks adding cytomel to my

dose, and upping my synthroid, might help, though to be honest, I'd rather go

back on Armour, perhaps on a higher dose, but that's just because I know I can

get the meds and even with my insurance, it is still cheaper than synthroid.

>

> As I understand it, part of the uniqueness of Hashi's is that eventually we

have conversion problems, and the T3 will drop. Can this be determined by any

special blood test that I can ask my endo about?

>

[Guest guest]

Hi ,

Have you ever been properly tested for Lyme disease? Not the standard

Labcorp/Quest crap...Proper Lyme testing is complex and controversial sadly.

Your symptoms sound very familiar to mine AND Lyme disease can and will wreck

havoc with your endocrine system..among other things.

There is some overlap in symptoms between hypoT and Lyme however those CFS and

Fibro diagnosis are red flags to me that there is something else going

on...Also, a recent case of Mono, which is the EBV (a virus) becoming active.

Just my two cents, I am not a Doc just a fellow patient who is suffering with

HypoT and Lyme.

[Guest guest]

Igenex lab in California is one of the best for Lyme testing.Dr. Spurlock is very versed in Lyme. From: Texas_Thyroid_Groups [mailto:Texas_Thyroid_Groups ] On Behalf Of ElliottSent: Tuesday, December 20, 2011 8:53 AMTo: Texas_Thyroid_Groups Subject: Re: VERY long intro - Hashi's, Armour and Synthroid Hi ,Have you ever been properly tested for Lyme disease? Not the standard Labcorp/Quest crap...Proper Lyme testing is complex and controversial sadly. Your symptoms sound very familiar to mine AND Lyme disease can and will wreck havoc with your endocrine system..among other things.There is some overlap in symptoms between hypoT and Lyme however those CFS and Fibro diagnosis are red flags to me that there is something else going on...Also, a recent case of Mono, which is the EBV (a virus) becoming active.Just my two cents, I am not a Doc just a fellow patient who is suffering with HypoT and Lyme.

[Guest guest]

Hi e,I've responded to a few of your comments below [MB] and shortened some of the message so the thread doesn't grow too long.  Your experiences are actually not at all unusual (unfortunately).  Endos are typically some of the worst doctors to treat autoimmune thyroid disease.  They are not trained in autoimmune diseases - they are trained to treat end stage diseases. 

Given your age, you likely have other hormonal imbalances, along your thyroid.  I have yet to meet anyone whose symptoms resolved on T4 alone.  I have met people that think they are doing fine on Synthroid alone yet have symptoms out the wazoo because they believe the doc when they say their labs are " normal " (e.g., my MIL that had poor sleep, low energy (she napped hours in the afternoon and would fall asleep whenever she sat still, etc.).

You past experiences with mono/EBV could be a contributor to your ongoing issues, BUT you still need adequate replacement thyroid hormone.  I can't tolerate the Natural thyroid since it's derived from pork (it is not uncommon for folks with autoimmune diseases to have issues with pork, since pork is the closet to humans in terms of tissue which is why they use it as a natural thyroid replacement hormone). 

In my experience, you cannot heal from any infection unless your thyroid is adequately medicated.  I did not heal from Lyme disease until my thyroid was adequately medicated.  I still have ongoing viral issues, as well as heavy metal.  So, for many of us, it's a constellation of issues that contributes to symptoms. 

As far as why you seem to be the only one in the family with issues, it could just be that you had the luck of getting autoimmune genes from your parents that predispose to these issues (you get one HLA-DR gene set from each parent).   I am the sickest in my family and I got the worst combination from my parents.   My younger son is in the same boat.

Since you have autoimmune thyroid disease, you should be tested for Celiac disease as the two tend to go hand in hand (due to the genes).   That can be a source of your symptoms in particular GI (constipation is a hallmark symptom).

While your family may have the genetic predisposition for diabetes, it doesn't mean you have to go there.  75+% of your health is due to lifestyle choices - what you eat, exercise, etc.   Your exercising is likely one of primary reasons your blood sugar levels are doing so well. 

__,_._,_

B.

[Guest guest]

Hi - Before I forget - I agree that at least for me - my endo really is

more adept at dealing with the typical age-onset diabetes and many obesity

related disorders (at her clinic, you can get info on bariatric surgery along

with your 'sugar test'...and this is one of the better offices here), but I

wonder what kind of doctor do I need? At this point, I hope that my nurse

practioner will be amenable to referring me to any specialist that I can find. I

just need to know who to look for. While we are in the border, my husband and I

are willing to travel up to Houston, Austin, San , all cities that are

5-7 hours from us, just so I can get some sincere, decent care.

I'll also go through your suggestions as well as ask some questions if possible.

I've been in joking denial about being peri-menopausal, so I know my hormones

are getting wacky, but that's been only recent (have yet to have a hot flash),

and my thyroid has been on a roller coaster for almost 20 years. My bout with

the EPV was also about 20 years ago; my thyroid antibody test had a number

around 370ish...is this something that stays the same year after year, is this

high or low?

And I thought that autoimmune issues weren't really genetic (and as a biologist,

I should be ashamed of my lack of knowledge of how the human body works). When I

mentioned lack of these issues in my family, it's with knowledge of at least

going back to my grandparents. It's not that I'm the sickest of my siblings,

it's that I'm the ONLY one of the five of us that have any of these issues.

That's why it's confusing me since my parents, grandparents, siblings, even

their children all do not have even one of my issues (sorry: I've been feeling

sorry for myself lately).

And I never thought about (possibly) having any celiac disease issues. I'm not

lactose intolerant (actually, I LOVE milk and anything dairy), I rarely eat a

lot of the trigger foods; it just seems that my GI tract is 'lazy' (as my

now-ex-endo told me). I'm never in pain, and actually it's more of a convenience

thing as since I'm slowly (emphasis on the 'slow) training for a marathon and I

worry about needing a bathroom since apparently only running gets my GI tract

moving. I'm still going to look into it anyway, just to be pro-active. Our diet,

while usually within what could be considered South Beach Diet limits, is not

that heavy on starches, carbs (other than vegetable) or even sugars, as I seem

to somehow lack a sweet tooth.

I just want to feel normal again, and refuse to let doctors tell me 'that at my

age' I should just accept all this as simply signs of aging.

Thanks again, everyone, for all the advice. I'm adding all the

suggestions/advice to a list (because otherwise I'll forget) so that when I

start calling and hopefully seeing a doctor I will know what to ask for.

I hope everyone has a wonderful holiday!

>

> Hi e,

>

> I've responded to a few of your comments below [MB] and shortened some of

> the message so the thread doesn't grow too long. Your experiences are

> actually not at all unusual (unfortunately). Endos are typically some of

> the worst doctors to treat autoimmune thyroid disease. They are not

> trained in autoimmune diseases - they are trained to treat end stage

> diseases.

>

> Given your age, you likely have other hormonal imbalances, along your

> thyroid. I have yet to meet anyone whose symptoms resolved on T4 alone. I

> have met people that think they are doing fine on Synthroid alone yet have

> symptoms out the wazoo because they believe the doc when they say their

> labs are " normal " (e.g., my MIL that had poor sleep, low energy (she napped

> hours in the afternoon and would fall asleep whenever she sat still, etc.).

>

> You past experiences with mono/EBV could be a contributor to your ongoing

> issues, BUT you still need adequate replacement thyroid hormone. I can't

> tolerate the Natural thyroid since it's derived from pork (it is not

> uncommon for folks with autoimmune diseases to have issues with pork, since

> pork is the closet to humans in terms of tissue which is why they use it as

> a natural thyroid replacement hormone).

>

> In my experience, you cannot heal from any infection unless your thyroid is

> adequately medicated. I did not heal from Lyme disease until my thyroid

> was adequately medicated. I still have ongoing viral issues, as well as

> heavy metal. So, for many of us, it's a constellation of issues that

> contributes to symptoms.

>

> As far as why you seem to be the only one in the family with issues, it

> could just be that you had the luck of getting autoimmune genes from your

> parents that predispose to these issues (you get one HLA-DR gene set from

> each parent). I am the sickest in my family and I got the worst

> combination from my parents. My younger son is in the same boat.

>

> Since you have autoimmune thyroid disease, you should be tested for Celiac

> disease as the two tend to go hand in hand (due to the genes). That can

> be a source of your symptoms in particular GI (constipation is a hallmark

> symptom).

>

> While your family may have the genetic predisposition for diabetes, it

> doesn't mean you have to go there. 75+% of your health is due to lifestyle

> choices - what you eat, exercise, etc. Your exercising is likely one of

> primary reasons your blood sugar levels are doing so well.

>

> >

> > __,_._,_

> >

> B.

>