The Thyroid Thread (Part II) - Page 40

[purplegirl]

Originally Posted by JacquelineR

yes, my doctors have all shrugged it off
thay've all said "some amount of tics is normal for any person" basically. it's not effecting daily living so they don't care

I am freaking out because I have so many of the symptoms....a lot of them.
Can you have this in the absence of a thyroid? No one has ever mentioned hashi to me before. I don't know if I've had an antibody test ever. I had my thyroid removed four years ago but never felt quite right with the synthroid. I am so concerned that my docs have missed this.

[lil_miss_understood]

Originally Posted by purplegirl

I am freaking out because I have so many of the symptoms....a lot of them.
Can you have this in the absence of a thyroid? No one has ever mentioned hashi to me before. I don't know if I've had an antibody test ever. I had my thyroid removed four years ago but never felt quite right with the synthroid. I am so concerned that my docs have missed this.

I'm not sure. I just joined the forum where they're discussing all things HE. It looks like there are some people trying LDN, but I haven't read those discussions yet.
I'm sorry, did you have thyroid cancer? I've seen studies showing that thyroid antibodies have a correlated increase of incidence in thyroid and breast cancers... (Trust me, not the info I want either. )
eta: and too. I tend to be a little more self-centered than usual when I'm sick. I remember freaking out when I first read about HE as well.

[purplegirl]

Originally Posted by JacquelineR

I'm not sure. I just joined the forum where they're discussing all things HE. It looks like there are some people trying LDN, but I haven't read those discussions yet.
I'm sorry, did you have thyroid cancer? I've seen studies showing that thyroid antibodies have a correlated increase of incidence in thyroid and breast cancers... (Trust me, not the info I want either. )
eta: and too. I tend to be a little more self-centered than usual when I'm sick. I remember freaking out when I first read about HE as well.

I'm trying not to freak out until I see my doc. I didn't have thyroid cancer just a huge goiter. I just have so many of the symptoms of HE that is really frightening.

Did your myoclonus get better? Are you on any treatment now for the myoclonus or HE? I remember when I first had an episode of myoclonus. My doc said it was stress and it did get better for over a year. It has returned with a vengeance. My hair seems to be slowing coming back but I still have to wear a wig.

[mediumcrunch]

Did anyone ever tell you WHY you had a huge goiter?

My daughter has hashi's (dx'd at 8) as do I, and so did my grandmother. My daughter was aymptomatic aside from a goiter. Her antibodies were so high that they went of the labs scale and her TSH was in the 70's. Despite medication she still has the goiter and probably always will-she is 17 now.
My mother has been symptomatic for well over a decade and her TSH is just starting to get to the point someone will give her meds. HUGE EYEROLL.

A woman presents with ALL the symptoms of thyroid disease. Her mother, her daughter and her granddaughter ALL have thyroid disease.
Her labs fall (barely) WNL so no one will treat her. :

[lil_miss_understood]

Originally Posted by purplegirl

I'm trying not to freak out until I see my doc. I didn't have thyroid cancer just a huge goiter. I just have so many of the symptoms of HE that is really frightening.

Did your myoclonus get better? Are you on any treatment now for the myoclonus or HE? I remember when I first had an episode of myoclonus. My doc said it was stress and it did get better for over a year. It has returned with a vengeance. My hair seems to be slowing coming back but I still have to wear a wig.

I should clarify that I have never lost all of my hair. I'm sorry that you have.
It did get better once I went on thyroid treatment, though I was still having occasional tics until I went on an Adrenal glandular. I am not on treatment for either.
My other symptoms are intermittent, I suspect waxing and waning with abs, but there are entire periods of time that I just don't remember (if you ask ANYone who knows me, they know this isn't like me at all.. I used to have a stellar memory and could recall entire conversations I'd had from 20 years ago), I have periods of time where I can't recall words, can't follow conversations, can't read, etc. My doctors call it "brain fog" but, having read the symptoms of HE and combined with my previous "diagnosis" of bipolar, the aphasia I also experience, the disorientation, the confusion, the dementia... I don't think they're right. And looking back on my family history, these are things which my mother's mother also experienced and complained of but no one took her seriously and shrugged it off as her "aging" until she was put in an Elder's home and drugged so they could keep her in a wheelchair (because she fell over every time she tried to walk).
Anyway... I hope that you find the help you need. You might want to check out the HE forums as well (there's a link on that page).

[aliah79]

This is so weird. I've been hypo since I was 10, and I've been pregnant twice, each time my meds were increased during pregnancy.

Right before I became pregnant, I had my thyroid tested and they upped my meds to 5gr. My prenatal labds showed I was hyper at .01, so my OB dialed back my Armour to 3gr.

I'm now 13 wks and they just retested and my level was .0305 .... still hyper. So he told me to stop taking the Armour completely.

I'm really nervous about this as I've been on the meds for 20 years and with my previous pregnancies they've had to up the meds each time. So to completely stop them freaks me out. We're going to retest in 6 weeks, but I'm really worried.

I've never been good at picking up symptoms, but hope that it becomes glaringly obvious if I suddenly go hypo before the 6 weeks is up.

[JaneS]

NO NO NO!

I'm so frustrated! This could be dangerous for your pregnancy if your body does not respond by upping your thyroid hormone production naturally!

A low TSH without hyper symptoms just means you are getting adequate thyroid hormone externally. It means your TSH doesn't need to be stimulated because you are taking enough to supply your body. Your symptoms should be your guide. It DOES NOT mean you are hyper.

How were you dx hypo?

Did you have Hashi's?

[JaneS]

Originally Posted by purplegirl

i am feeling like I am super hypo and have been since the summer. I just got some blood work done and am anxious for the results. I have orthostatic hypotension, my hair has all fallen out and my ankles are swollen.

Does being hypo affect your cognitions? I feel so spacey and am doing things that don't make sense, ie putting stuff in the frig that belongs in the cabinet. Additionally, I've been having myoclonic tics. I don't know if it is related but it scares the crap out of me *sigh*

I am so frustrated that after 4 years my doctors don't listen and can't seeem to manage my symptoms better. I have an appt with an endo in two weeks though I'm not holding out much hope for her being open to trying different meds (currently taking 137mcg synthyroid)

Tics are connected to thyroid function, see Mark Starr's book:
http://www.amazon.com/gp/product/097...SIN=0975262408

Yes most definitely re: hair loss and spaciness/brain fog those are common. Also with respect to hair loss gluten intolerance is highly correlated.

If you don't have a thyroid, low thyroid hormone is the culprit. I would sincerely recommend reading about natural thyroid hormone in Starr's book and at STTM www.stopthethyroidmadness.com. Synthroid is crap.

I would look for a doc that prescribes Armour at their website locator. Reading about drawbacks of Armour too at STTM usually a doctor that px's it will be aware of current issue with cellulose and be more open to compounding or other natural thyroid replacement than an endo who uses synthetic T4 only Synthroid.

Also if you do not have a thyroid you are not controlling your calcium well the thyroid cannot be producing calcitonin as well. I think it is ridiculous that mainstream endos do not realize this and px T4 only! Synthroid use is correlated with osteoporosis.

The Broda Barnes Foundation is also another good source of doctors who treat to symptoms using whole natural thyroid hormone replacement and not to lab tests.

today! not at you mamas! just how messed up this whole thyroid treatment is today.

[aliah79]

Originally Posted by JaneS

NO NO NO!

I'm so frustrated! This could be dangerous for your pregnancy if your body does not respond by upping your thyroid hormone production naturally!

A low TSH without hyper symptoms just means you are getting adequate thyroid hormone externally. It means your TSH doesn't need to be stimulated because you are taking enough to supply your body. Your symptoms should be your guide. It DOES NOT mean you are hyper.

How were you dx hypo?

Did you have Hashi's?

I am worried about the baby... I don't know if I should go against his advice and still take a smaller dose, or what. I've never had this problem before, so it's hard to know what to trust when your baby's health is on the line.

I was 10. I think it was just routine blood work, maybe my parents had concerns because I'd always been chubby. It's hereditary. My grandmother and my cousin and I are all genetic clones. Not Hashi's.

[JaneS]

Well all I can say from what I know, I would be taking the original dose.

An OB is also not an endo. What would your endo (if you have one) say if you asked him/her whether you are considered hypo by blood only, not symptoms? And about the reason I previously posted for the low TSH? A low TSH if you are treated with exogenous thyroid hormone is different than a low TSH naturally.

There might be some information on this and pregnancy at Mary Shomon's About.Thyroid.com website.

[aliah79]

I've been to endos before and they did nothing more than the TSH. Not to mention they wouldn't even look at my PCOS / Insulin Resistance. So I haven't been back. My regular doctor did more for my thyroid than my endo.

I have thought about getting a second opinion and finding another endo, but I wouldn't be able to get an appointment for months, which won't help me in this situation.

If I've been on meds for 20 years, how are they going to know where my TSH is normally? They can only tell where my numbers are based on the dose I'm already on. If my blood is showing hyper, then the baby is being exposed to hyper / excess thyroid hormone as well.

I don't know for sure what symptoms are from thyroid, pregnancy, or diabetes. I can't sleep for long, I am restless and revved up to go, I'm hungry all the time, and have lost 20lbs in the past four months. Could be a change in diet, or new meds, or thyroid. I don't know. I don't want to risk being too hyper or too hypo, and all I can really go on is what my bloodwork says.

[aliah79]

Ok, I think I understand what you are saying - takes me some time to process things.

I wasn't aware that Armour suppressed your TSH numbers. Which actually makes a lot of sense since I was on compounded thyroid before Armour was back in stock...

I am still waiting for a call to see what all my levels were, so I can see if my T4 is within normal range, then the current dose would be right.

However, how do you tell your doctor they are wrong? LOL

[JaneS]

All thyroid meds suppress your TSH. TSH is produced in the body to stimulate the thyroid gland to produce more thyroid hormone. If you have enough circulating in the blood, the thyroid gland is not stimulated.

Yes, you do have hyper symptoms. So dropping down makes sense for you then. BUT something's going on. Pregnancy does change the immune system. It might make sense to run Hashi's/Graves antibody testing.

Your symptoms didn't go away when you dropped down?

You got symptoms when you changed from compounded when you had been on Armour for years? Armour is having problems with the cellulose filler right now, making it less potent.

Yes, your baby would only be exposed to hyper thyroid if your T4 and T3 numbers are high, not your TSH being low.

PCOS/Insulin resistance is correlated with thyroid problems. I have also read about magnesium deficiency causes insulin resistance as well in Carolyn Dean's book.
http://www.amazon.com/gp/product/034...SIN=034549458X

and I have noticed that high doses of magnesium (baths, foot soaks, transdermal oil/gel... I didn't do well on oral) greatly helps my blood sugar issues as well. I really found that out recently when I stopped! Hello hypoglycemia again!

[JaneS]

Oh and how do you tell your doctor they are wrong? Well if it's a relationship worth preserving just research the heck outta it, ask tons of questions and ask for more tests, that is what I do.

[aliah79]

I was thinking that TSH showed up lower with Armour than with Synthroid, but after more thinking... if you're basing it on how you feel, and you feel better when your T3/T4 are in normal range, that means your TSH usually shows up lower - right? I'm not good with the medical stuff...LOL

I was on Synthroid until about 5 years ago, when my GP tested my T3/T4 and the T3 was low, so my GP switched me to Armour. I was on that until Armour disappeared, then I had a couple months of NatureThyroid before that was gone, so it was then compounded. I've been back on Armour for 4-5 months now.

I didn't notice any symptoms at first after going from compounded to Armour, but the jump in dosage was so much (from 3gr to 5gr). I went from hypo on compounded to hyper on Armour. I think I'm confusing myself even more...

When I dropped back down to 3gr, the symptoms seemed to go away, but now it seems like they are just milder, though they are more noticeable each day. On the 5gr I was hot, sweating, shaking, jittery, hard time sleeping, waking up multiple times a night... On the 3gr, I can't sleep for long and I feel a little jumpy/anxious/irritable and revved up - everything seems really bright and clear. I'm also more nauseous, though I didn't have morning sickness the first trimester...this has just developed in the past week or so and it more of an all day thing.

The reason I went to the endo in the first place was to see how all of this connected. The PCOS/IR is hereditary as well. Me and my cousin are spitting images of my grandmother. But as I said, she didn't even want to look at it. I guess as long as it wasn't diabetes at that point, she didn't care.

About 3-4 years ago I developed monthly migraines. They gave me the standard meds, but after one dose I swore I wouldn't take it again. So the next month I took a calcium / magnesium supplement and they went away. I haven't been taking the supplement for over a year and they haven't come back.

I've tried to learn more about my thyroid issues, but end up getting confused. I guess it's a good thing I didn't want to be a doctor. LOL

ANd yes, it is worth preserving. It's nice to have a doctor who wants to work with me, not just tell me what to do. He's always willing to listen and we talk everything through. First time I've had a doc call me personally on a regular basis too. I just feel like I've been second guessing everything he's tried to do in the past 13 weeks and don't want him to get sick of me. LOL I haven't thought to look into Hashi's or Graves, it just didn't seem that the symptoms fit. But I can ask.

[purplegirl]

Originally Posted by JaneS

Tics are connected to thyroid function, see Mark Starr's book:
http://www.amazon.com/gp/product/097...SIN=0975262408

Yes most definitely re: hair loss and spaciness/brain fog those are common. Also with respect to hair loss gluten intolerance is highly correlated.

If you don't have a thyroid, low thyroid hormone is the culprit. I would sincerely recommend reading about natural thyroid hormone in Starr's book and at STTM www.stopthethyroidmadness.com. Synthroid is crap.

I would look for a doc that prescribes Armour at their website locator. Reading about drawbacks of Armour too at STTM usually a doctor that px's it will be aware of current issue with cellulose and be more open to compounding or other natural thyroid replacement than an endo who uses synthetic T4 only Synthroid.

Also if you do not have a thyroid you are not controlling your calcium well the thyroid cannot be producing calcitonin as well. I think it is ridiculous that mainstream endos do not realize this and px T4 only! Synthroid use is correlated with osteoporosis.

The Broda Barnes Foundation is also another good source of doctors who treat to symptoms using whole natural thyroid hormone replacement and not to lab tests.

today! not at you mamas! just how messed up this whole thyroid treatment is today.

Thank you, Thank you! I'm so frustrated and at times feel hopeless. I will most definitely check the resources you listed and find a doc who will prescribe Armour. I see my endo next week and damned if I'm not going to ask her. I have no thyroid and feel like synthroid is just not hitting it for me.

[aliah79]

Interestingly enough... I took just the 1gr last night (until I can get the exact numbers of my results and make a more informed decision) - and for the first time my fasting blood sugar was under 90.

I'd read that high levels of thyroid hormone can cause your blood sugar to rise, and asked my OB last visit if this could be the problem, but he didn't seem to think it was.

Looks like I was right though... so now I have to decide if this means I was really hyper? LOL I went to bed at 11:30 last night, woke up at 4:45 this morning, unable to get back to sleep, and I am so revved up already. I hadn't even had my morning caffeine and was talking a mile a minute to my neighbor. So - maybe doc is right and I'm hyper....

[JaneS]

Yes it seems to me that those would be hyper symptoms.

I know thyroid influences blood sugar for sure but don't know the details of it.

I wish some autoimmune person would step in and give their knowledge of pregnancy switching one from hypo to hyper. As far as I know, this is a classic Hashimoto's symptom.

[aliah79]

I've also read that taking Armour at night can cause you to have insomnia. That the T3 can cause that and for you to feel hyped up. So now I'm confused again. I've emailed my OB and asked if free T3 / T4 were tested, and if not, can we do that before taking me off the meds completely. I also explained everything else.

I've also had what I consider extreme weight loss - 7lbs in one month while being pregnant seems like a lot to me (total is 20lbs in 4 months, and I'm 3 months pg). I can literally see myself melting away. I'm also hungry all the time, like stomach growling hunger, even though I'm eating every two hours.

I read a bit about Hashi's, but I didn't know switching from hypo to hyper was a symptom. I'll look into it more and ask my OB about it. If we retest for the T3 / T4, maybe we can do it for Hashimoto's too.

[lil_miss_understood]

Originally Posted by JaneS

Yes it seems to me that those would be hyper symptoms.

I know thyroid influences blood sugar for sure but don't know the details of it.

I wish some autoimmune person would step in and give their knowledge of pregnancy switching one from hypo to hyper. As far as I know, this is a classic Hashimoto's symptom.

i think i might have gone hyper with ds2's pregnancy but wasn't being treated or monitored yet as i was dx'ed after that... i lost 35lbs in the first 5 mths and then struggled to gain
ive heard that the body may block the antibodies during pgcy causing an apparent remission