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Thyroid Update - 2/23/2015 5:01:09 PM   
LafayetteLady


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Joined: 5/2/2007
From: Northern New Jersey
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For those of you who have been here long enough (seems like a lot of people have gone poof), it's been six months since I had my thyroid out. What a weird experience it has been.

Between not getting my levothyroxine filled right away which caused hallucinations (not kidding), to having to keep adjusting the dosing and it still isn't right.

The bright side is that the swelling has finally gone down. Both my primary and endocrinologist were surprised at how long it stayed swollen (gee, like it didn't bother me enough).

The down side? I'm finding it impossible to control my weight because I'm still way underactive (undermedicated). Nothing fits and it's pretty annoying. I knew going into this whole thing that it could take a year to get the right medication dosage, but that doesn't make it less frustrating.

Most especially, since all extra weight means that much more pain in my back. I have barely been able to walk for a week now. I have a new pain management doctor, but she is very conservative. She put me on Neurontin, which didn't work before, and is doubtful it will work now. But I figure if I just keep following along like this, eventually she is going to have to come up with something that isn't like Lyrica in the way in works (which Neurontin is).

Anyway, vent and update over. Was just feeling frustrating and needed to tell someone.
Profile   Post #: 1
RE: Thyroid Update - 2/23/2015 5:49:53 PM   
satanscharmer


Posts: 376
Status: offline
LL, vent away and hang in there.
I'll be praying you and your doctor find the right dosage soon.

(in reply to LafayetteLady)
Profile   Post #: 2
RE: Thyroid Update - 2/23/2015 5:56:46 PM   
GoddessManko


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From: Dante's Inferno
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Slight stretches and short walks might help. Not sure how much activity you're allowed but it sounds like you need an outlet. All else fails a good book or a new hobby. Happy healing! I always tell injured athletes it's better to wait and heal and get back there than to risk it and injure worse. I got rid of my size 0 jeans for leggings once I found a good butt workout. I'm still happy with that choice.

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RE: Thyroid Update - 2/23/2015 6:01:57 PM   
shiftyw


Posts: 2831
Joined: 6/6/2013
From: The Shire
Status: offline
Hi sweetheart!

I was JUST thinking of you!

I hear you on the frustrations. And I'm sorry to say- even when they get it right, it could go off again. Weight will continue to be a struggle. Exercise is all that has helped keep mine headed in the right direction. But you're getting through the worst of it.

Have they checked your parathyroids and calcium levels?

Take care of yourself and we're all here to listen. My thyroid is still in but functioning poorly- so while not in the same boat, I'm certainly paddling around the same lake. *Hugs and well wishes*

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RE: Thyroid Update - 3/2/2015 2:01:49 PM   
ShaharThorne


Posts: 11071
Joined: 2/24/2009
From: Somewhere in TX
Status: offline
Still dealing with hypothyroidism myself. It takes a mallet to my head to remember to take my morning meds, but I do remember the evening ones (the mood stabilizers). I hope you get this fixed soon...just don't take a calcium pill at the same time as your thyroid meds...calcium cancels out the thyroid meds (which is why I take mine in the mornings, if I remember to).

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RE: Thyroid Update - 3/3/2015 7:54:38 PM   
DesFIP


Posts: 25191
Joined: 11/25/2007
From: Apple County NY
Status: offline
I'm presently undermedicated because raising the thyroid levels exacerbates my anxiety disorder.
And I don't want to have to live off of Xanax.

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RE: Thyroid Update - 6/27/2015 10:32:35 PM   
crxmale


Posts: 55
Joined: 9/23/2006
Status: offline
Many people have trouble maintaining proper thyroid levels. Make sure you take it on an empty stomach first thing in the morning and at least 30 minutes before you consume anything else. Many Dr's argue that the brand Synthroid is superior to generics and provide more consistent blood levels. Study after study has shown no correlation. However, it was recently discovered that low levels of Vitamin D can affect the blood levels of thyroid. We all seem to have low Vitamin D levels due to our lifestyles and diet. It is easy to rectify by taking around 2000 IU of OTC Vitamin D3. You might need more or less but try it for a couple of months and see if your thyroid levels become more stable.

(in reply to DesFIP)
Profile   Post #: 7
RE: Thyroid Update - 9/16/2015 4:09:38 PM   
dollparts85


Posts: 1233
Joined: 10/22/2006
From: NY
Status: offline
Many people do best with taking it several hours before you get up in the morning. Let set your alarm, wake up and take it and go back to sleep. Hypothyroidism can also slow your digestion and lower your stomach acid levels so it can take a long time to absorb. So the longer you go between taking it and eating, the best. I've also found taking the brand name Synthyroid works A LOT better than the generic. I took the generic for 10 years and went from 125 lbs to 380 lbs. Switched to the brand name and I've lost 45 lbs or so in 8 months.

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RE: Thyroid Update - 9/29/2015 12:42:02 PM   
LafayetteLady


Posts: 7683
Joined: 5/2/2007
From: Northern New Jersey
Status: offline
~ fast reply~
Wow I haven't been on here in ages and I just saw this post so I figured I would give everybody an update. I'm also doing it via voice to text on my phone so who knows what might come out on this text.

Somewhere along the line one of my other meds cause some pretty severe swelling in my foot so my doctor put me on a diuretic. The combination 175 MCG of levothyroxine and the diuretic has had me losing weight simply by watching someone else walk across the room which is pretty cool since before I gained weight watching someone else eat a piece of cake.

My thyroid levels right now are actually a little high and we're leaving them that way until November at my request. I know thyroid medicine is not a weight loss product, but that goes with the diuretic has caused me to lose like 50 pounds so far and I've done nothing different at all. I have heard my doctor that if I get any symptoms hyper thyroid I will immediately reduce the dose but so far we're doing fine.

The downside to this is for every ounce I drop my insulin dosage changes so my diabetes has been so brittle for the past few months that I don't know which end is up. Before I knew if I ate X and took Y amount of insulin in 2 hours my blood sugar would be z. Now if it works today it may not work tomorrow but I'm going hypoglycemic instead of hyper which is actually safer physically and easier to manage but still a pain in the ass.

As for the back pain I began aqua therapy a few months back and I have two great physical therapists and AM doing so much better as far as pain is concerned. Which is a good thing since I'm either allergic or immune to basically all pain killers at one point I was given 50 micrograms of fentanyl in an IV push and they might as well have given me saline. I didn't have a millisecond of relieved or even like wow somebody gave me a drug. But with the Aqua therapy I'm able to do so much more and I am so grateful for it to me it's like a miracle. My next session we move to the gym and start working on the neck pain which is where I have the stenosis. My physical therapist told me that we're only going to get so far with the lower back pain because the degenerative hip arthritis I have throughout my body just going to never make me a hundred percent. But I am so happy with where I am now I don't care it is such an improvement over before when I couldn't even walk across the street to get the mail.

Weight loss I'm getting ready to go to the doctor and talk to him about a tummy tuck because as I've been losing the weight where my c section scar is and how it makes that little shelf, I keep getting rashes and infections and apparently thanks to someone on this site, I think it was sharhar, a tummy tuck becomes a medical necessity to prevent the constant rashes and infections because there is no way to keep it dry all the time.

So thanks everyone for all of the good energy and prayers I really appreciate it I'm doing very very well. Oh and as far as the vitamin D goes I take 50000 iu's twice a week and my vitamin D levels are better than I've ever been so is my cholesterol.

(in reply to dollparts85)
Profile   Post #: 9
RE: Thyroid Update - 9/29/2015 6:52:25 PM   
DesFIP


Posts: 25191
Joined: 11/25/2007
From: Apple County NY
Status: offline
50,000 IU of Vitamin D? Or did you mean 5,000 which is a much more normal dose?

Anyway, It's great to get an update and know you're doing so well.

I go to the doctor in a couple of weeks and I think it's time we up my thyroid meds from 112 mcg to 125. I'm not looking forward to it because I'll be anxious for 4 - 6 months if past history repeats itself. But it should help with the fatigue. And weight loss.

_____________________________

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Cynical and proud of it!


(in reply to LafayetteLady)
Profile   Post #: 10
RE: Thyroid Update - 10/2/2015 10:03:25 PM   
LafayetteLady


Posts: 7683
Joined: 5/2/2007
From: Northern New Jersey
Status: offline
No I meant 50 K twice a week. It used to be that PLUS another 2000 a day. My vitamin D levels do not stay at normal range on their own. I could have gone with just the 2K every day but this way I have two whole days a week to take one less pill. Completely psychological on my part.

And now irrelevant because for some stupid reason my insurance won't pay for my Prozac if it is two 40mg pills a day but no problem if it is 4 20mg pills a day. How stupid is that?

(in reply to DesFIP)
Profile   Post #: 11
RE: Thyroid Update - 1/14/2016 7:41:02 PM   
MissKatya


Posts: 341
Joined: 12/21/2007
From: NYC
Status: offline
LafayetteLady-glad to see that you are doing better. Sounds like you have gone to hell and back.

Just curious but when I was first given 50,000 Vitamin D, I always thought it was too much. Is two dosages of 50,000 a standard dosage? I only ask because I'm low on vitamin D and taking 50,000 once a week.

Also, this is more of a general question to anyone experiencing thyroid problems.

Over the summer, I had a tumor removed that effected my hormones. My doctor put me on a 3 month birth control pill to prevent new tumors from forming. during this time (in november), I went to my endocrinologist for my 6 month checkup (as my Hashimoto's was regulated at the moment) and while the Free T3 was high, the T4 was normal but antibodies were shot through the roof. With that being said, he left the meds at the current dosage. I felt fine. Nothing felt off at the moment.

Now here is where it gets tricky. I just finished up my second 3 month dose of birth control (in december) and about 3 weeks ago, I started to gain weight and show symptoms of being "off" but it happened really quickly-I've had Hashimoto's for about 13 years now and this is the first time where the weight gain was pretty quick. It was like I was not on medication at all. That is how rapid it happened. It's only a 10 pound gain but it's enough to make me notice, especially when my weight has been stable for so long.

So my question is-has anyone experienced anything like this where hormone/estrogen fluctuations cause that much of an upset?

It may be that I experienced a serious surgery and my body is still not back to normal so the holiday eats may have caused a trickle down effect so I'm watching what I'm eating and keeping an eye on things but there is a part of me that is worried about the hormone change being the culprit. If anyone has any stories they would like to share or suggestions on what to look for, please let me know.

Also, if anyone knows of a good endocrinologist in NNJ or NYC....I'm all ears. I am not happy with the one that I am seeing now.

_____________________________

"The desire to inflict pain, that is all that is uppermost"-Albert Fish

(in reply to LafayetteLady)
Profile   Post #: 12
RE: Thyroid Update - 1/15/2016 2:33:12 AM   
LadyConstanze


Posts: 9722
Joined: 2/18/2005
Status: offline

quote:

ORIGINAL: MissKatya

LafayetteLady-glad to see that you are doing better. Sounds like you have gone to hell and back.

Just curious but when I was first given 50,000 Vitamin D, I always thought it was too much. Is two dosages of 50,000 a standard dosage? I only ask because I'm low on vitamin D and taking 50,000 once a week.

Also, this is more of a general question to anyone experiencing thyroid problems.

Over the summer, I had a tumor removed that effected my hormones. My doctor put me on a 3 month birth control pill to prevent new tumors from forming. during this time (in november), I went to my endocrinologist for my 6 month checkup (as my Hashimoto's was regulated at the moment) and while the Free T3 was high, the T4 was normal but antibodies were shot through the roof. With that being said, he left the meds at the current dosage. I felt fine. Nothing felt off at the moment.

Now here is where it gets tricky. I just finished up my second 3 month dose of birth control (in december) and about 3 weeks ago, I started to gain weight and show symptoms of being "off" but it happened really quickly-I've had Hashimoto's for about 13 years now and this is the first time where the weight gain was pretty quick. It was like I was not on medication at all. That is how rapid it happened. It's only a 10 pound gain but it's enough to make me notice, especially when my weight has been stable for so long.

So my question is-has anyone experienced anything like this where hormone/estrogen fluctuations cause that much of an upset?

It may be that I experienced a serious surgery and my body is still not back to normal so the holiday eats may have caused a trickle down effect so I'm watching what I'm eating and keeping an eye on things but there is a part of me that is worried about the hormone change being the culprit. If anyone has any stories they would like to share or suggestions on what to look for, please let me know.

Also, if anyone knows of a good endocrinologist in NNJ or NYC....I'm all ears. I am not happy with the one that I am seeing now.


Absolutely, yes, my endo here now works together with my endo in LA, and basically they share blood tests.

My antibodies were through the roof about 18 months ago, which was pretty awful as I was compatible to somebody with leukemia as a donor for bone marrow, as long as the antibodies were too high, they couldn't use my bone marrow as it would have caused her problems.

The result was also putting me on the pill (apparently a misfiring thyroid takes a lot of stuff from your body, including estrogen and due to only having one ovary left, it seemed to be a bit of a problem anyway), switching me over to an NDT, increasing the vitamin D and B12 dramatically and adding folate and some DHEA. I also take some selenium.

They did a test where they checked for reverse T3 and it turned out I produced a lot of that with levo, as apparently I can't really metabolize levo.

Previous to that, they put my adrenals right, because they supplemented for the lack of proper thyroid function, so my sleep patterns were more than erratic, it was a bit of a pain in the neck as I had to give up coffee, tea, carbonated drinks, etc. It basically can become pretty much of a vicious cycle, as the more your adrenals work, the more the thyroid takes a good kicking.

It seriously worked wonders, my energy levels went through the roof, within 3 months the antibodies were in complete remission, I didn't lose much weight (maybe 10 lbs) but toned up beyond believe and dropped from a size 8 to a 2 without effort, they waited another 6 months to make sure it was stable and the antibodies aren't coming back and then tapped me for the bone marrow.

The way they explained it to me was that the adrenals have to be addressed first as there is a relation to the thyroid, then without the right amount of D and B12 you can have all the T3 in your body, it just doesn't get metabolized in the cells, they seem to be some sort of facilitator. I have regular B12 shots and take 5000 units of D3 a day and twice a week double up on it. Basically my ranges have to be not "within range" but at the optimal range, which is the upper third.

I wish they would have done that years ago, it was like I got my life back and the dogs are now worried about my energy levels...

Oh and absolutely GF as the body reacts to the gluten by producing antibodies.

_____________________________

There are 10 kinds of people who understand binary
Those who do and those who don't!

http://exdomme.blogspot.com/2012/07/public-service-announcement.html

(in reply to MissKatya)
Profile   Post #: 13
RE: Thyroid Update - 1/15/2016 8:01:14 AM   
MissKatya


Posts: 341
Joined: 12/21/2007
From: NYC
Status: offline

quote:

ORIGINAL: LadyConstanze


quote:

ORIGINAL: MissKatya

LafayetteLady-glad to see that you are doing better. Sounds like you have gone to hell and back.

Just curious but when I was first given 50,000 Vitamin D, I always thought it was too much. Is two dosages of 50,000 a standard dosage? I only ask because I'm low on vitamin D and taking 50,000 once a week.

Also, this is more of a general question to anyone experiencing thyroid problems.

Over the summer, I had a tumor removed that effected my hormones. My doctor put me on a 3 month birth control pill to prevent new tumors from forming. during this time (in november), I went to my endocrinologist for my 6 month checkup (as my Hashimoto's was regulated at the moment) and while the Free T3 was high, the T4 was normal but antibodies were shot through the roof. With that being said, he left the meds at the current dosage. I felt fine. Nothing felt off at the moment.

Now here is where it gets tricky. I just finished up my second 3 month dose of birth control (in december) and about 3 weeks ago, I started to gain weight and show symptoms of being "off" but it happened really quickly-I've had Hashimoto's for about 13 years now and this is the first time where the weight gain was pretty quick. It was like I was not on medication at all. That is how rapid it happened. It's only a 10 pound gain but it's enough to make me notice, especially when my weight has been stable for so long.

So my question is-has anyone experienced anything like this where hormone/estrogen fluctuations cause that much of an upset?

It may be that I experienced a serious surgery and my body is still not back to normal so the holiday eats may have caused a trickle down effect so I'm watching what I'm eating and keeping an eye on things but there is a part of me that is worried about the hormone change being the culprit. If anyone has any stories they would like to share or suggestions on what to look for, please let me know.

Also, if anyone knows of a good endocrinologist in NNJ or NYC....I'm all ears. I am not happy with the one that I am seeing now.


Absolutely, yes, my endo here now works together with my endo in LA, and basically they share blood tests.

My antibodies were through the roof about 18 months ago, which was pretty awful as I was compatible to somebody with leukemia as a donor for bone marrow, as long as the antibodies were too high, they couldn't use my bone marrow as it would have caused her problems.

The result was also putting me on the pill (apparently a misfiring thyroid takes a lot of stuff from your body, including estrogen and due to only having one ovary left, it seemed to be a bit of a problem anyway), switching me over to an NDT, increasing the vitamin D and B12 dramatically and adding folate and some DHEA. I also take some selenium.

They did a test where they checked for reverse T3 and it turned out I produced a lot of that with levo, as apparently I can't really metabolize levo.

Previous to that, they put my adrenals right, because they supplemented for the lack of proper thyroid function, so my sleep patterns were more than erratic, it was a bit of a pain in the neck as I had to give up coffee, tea, carbonated drinks, etc. It basically can become pretty much of a vicious cycle, as the more your adrenals work, the more the thyroid takes a good kicking.

It seriously worked wonders, my energy levels went through the roof, within 3 months the antibodies were in complete remission, I didn't lose much weight (maybe 10 lbs) but toned up beyond believe and dropped from a size 8 to a 2 without effort, they waited another 6 months to make sure it was stable and the antibodies aren't coming back and then tapped me for the bone marrow.

The way they explained it to me was that the adrenals have to be addressed first as there is a relation to the thyroid, then without the right amount of D and B12 you can have all the T3 in your body, it just doesn't get metabolized in the cells, they seem to be some sort of facilitator. I have regular B12 shots and take 5000 units of D3 a day and twice a week double up on it. Basically my ranges have to be not "within range" but at the optimal range, which is the upper third.

I wish they would have done that years ago, it was like I got my life back and the dogs are now worried about my energy levels...

Oh and absolutely GF as the body reacts to the gluten by producing antibodies.



Thanks for the info, JC.

We have spoken about our thyroid maladies in the past. I've cut a shit-ton of gluten out of my diet over the past year or so because I have noticed a sensitivity to it but I will admit-I'm not 100% GF. I do love stuffing during the holidays. Lol.

My problem is that my endo is a real asshole and not to get into details but when I asked for copies of my medical records, I was asked by his receptionist if I was "going to another doctor and why would I leave him and if I was leaving him (I wasn't at the moment) then they would charge me for my medical records)". There are other outstanding factors as to why I don't want to go back to that office but that kind of behavior caught me off guard.

I found another doctor but that appointment is in the end of February (as opposed to May, when they originally scheduled me).

I'm wondering if it would be possible to double up on my vitamin D to see if that makes a change at all. I'm on 50,000 a week and when I last seen my doctor, it was low but that may have been because I skipped 2 weeks before my bloodwork was done. It doesn't feel like it's increased since being back on it.


_____________________________

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(in reply to LadyConstanze)
Profile   Post #: 14
RE: Thyroid Update - 1/15/2016 8:17:30 AM   
LadyConstanze


Posts: 9722
Joined: 2/18/2005
Status: offline
Give B12 a shot, changes are that you are low on that too. The selenium will help the thyroid as well, I get some quiet over the weekend I hope and shoot you a bunch of info, stuff they never told me before and I show a before and after pic, you wouldn't believe it...

_____________________________

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Those who do and those who don't!

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Profile   Post #: 15
RE: Thyroid Update - 1/15/2016 10:00:36 AM   
MissKatya


Posts: 341
Joined: 12/21/2007
From: NYC
Status: offline

quote:

ORIGINAL: LadyConstanze

Give B12 a shot, changes are that you are low on that too. The selenium will help the thyroid as well, I get some quiet over the weekend I hope and shoot you a bunch of info, stuff they never told me before and I show a before and after pic, you wouldn't believe it...


Based on my last blood test, (ironically) my B12 is in the normal range however, I'm not taking selenium so that's an option to test out.

_____________________________

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Profile   Post #: 16
RE: Thyroid Update - 1/15/2016 11:01:13 AM   
angelikaJ


Posts: 8641
Joined: 6/22/2007
Status: offline
Are you taking D2 or D3?

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Profile   Post #: 17
RE: Thyroid Update - 1/15/2016 11:30:15 AM   
LadyConstanze


Posts: 9722
Joined: 2/18/2005
Status: offline
ISn't D2 absolutely useless?

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Profile   Post #: 18
RE: Thyroid Update - 1/15/2016 11:36:20 AM   
MissKatya


Posts: 341
Joined: 12/21/2007
From: NYC
Status: offline
quote:

ORIGINAL: angelikaJ

Are you taking D2 or D3?


I'm taking 50,000 units (a week) of D2 as prescribed by my asshole doctor.

I forgot to add "a week" into my comment. oops.

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Profile   Post #: 19
RE: Thyroid Update - 1/15/2016 3:30:13 PM   
angelikaJ


Posts: 8641
Joined: 6/22/2007
Status: offline
D3 is the form known for being "bioavailable".

http://saveourbones.com/the-huge-difference-between-vitamins-d3-and-d2-and-why-you-should-never-take-d2/

http://ajcn.nutrition.org/content/84/4/694.full

https://www.vitamindcouncil.org/blog/meta-analysis-looks-at-efficacy-of-d2-vs-d3/

http://www.ncbi.nlm.nih.gov/pubmed/24001747

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30 fluffy points!

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Profile   Post #: 20
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