# Help from the masters please



## smiths (Aug 7, 2013)

Diagnosed in late 2010 with hashimotos....little over 12 years after docs stopped listening to me and wrote me off as nuttty im sure.
I have lots of things figured out now, stop the thyroid madness help me a lot and has kind been my guide. But im still having some issues and wonder what you think.
Most of the time I am ok ish. But I can get on a great streak and wow I love it but it only seems to late a week at best. My trouble times are now ovulation and menstruation. I think I swing hyper then.....bad part thats 2 weeks out of my month. If I go with the sttm ideas I should keep upping my meds till they stop. My tsh is 0.01 which my doc is crazy about and wants me to back off but I so want to just get this in some sort of check and get my life back. Dont know what to do?
During these hyper? attacks I get peanut butter pumping tbrough my heart, i get air hungry and am constantly rubbing my chest and raising my arms above my head to get a deep breath, im shaky, and my body feels like im stuck in a room with a blue grass banjo player, ( no offensive, just the speed and tone makes me a little crazy) I could cry at a drop of a hat, and my lower part of legs have massive cramps.after a few days of this I get the bottom feet pain. I also get loud tinnitus. ....BONUS!!
Additional info...43 "going thru perimenopause" if u believe doc...dont have any reason not to BUT dont have any reason to though either..especially if I take in past practice. Also my tsh number when caught wasnt too high, but with hashy doesnt matter to much anyway, but my physical symptoms where huge (cant believe in hindsight I was even moving). I just started lugols today..for 15 mins my body felt calm like it hasnt in years. Not gonna lie here but boy this is embarrassing. ...I have also found inflammation relief from coffee enemas...I am gluten free, only eat organic. I take selenium, vit c, d, zinc, magnesium, and vit e, b12 daily. I am currently on 3 grain of armour a day against my docs wishes.. Oxymoron I smoke cigarettes, but just read new study believes smoking keeps antibodies at bay..who knows..if any consolation, I smoke non chemical cigarettes, just tobacco. Oh, heres possibly a big one, but I dont know, only have one adrenal. Doc says it functioning fine.....if you believe em, again. My cortisol has tested anywhere from 3 to during hyper? times at 24.5. I have also developed fibroid cysts in breasts in the last 2 yrs.
So I am curious what you all think. If I am to believe this is perimenopause, does this just happen? 
Has anyone else been thru this? Has anybody found any answers.....I sure could use any input.
I am aware nobody here is a doc.............and thats why im here.


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## jenny v (May 6, 2012)

Welcome!

Unfortunately, it sounds like your doctor is a TSH worshipper, which is not great. You need to be looking at your Free T3 and Free T4 to truly see what is happening in your thyroid. Have you ever had those checked?


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## hashimotocoaster (Mar 22, 2013)

Hi there!

I agree that checking your Free T3 and T4 is important to see what's going on.

It does sound like you're hyper, though. I totally understand about smoking--I just quit recently and it hasn't been easy, but I will tell you that my hyper symptoms (tremor, palpitations, etc.) have calmed significantly. I've heard about tobacco keeping antibodies suppressed too, and it makes sense, but smoking also a risk factor for other autoimmune diseases, and I'm deathly afraid of getting anything ELSE, so I took the leap.

Have you had your TSI antibodies tested?


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## smiths (Aug 7, 2013)

Thanks for the replies.....last t3 and t4 check was last year. T3 seemed in range mid way....my t4 was .98 drop off level for them is .90. Cortisol one hr test was 33.3.my dheas were just barly hanging on too. Not real sure what to do for that and the benefits. Need to look it up again, im sure I did b4 and just forgot. I feel like im doing all I can to stop the swings...besides smoking...maybe, idk. Im down to half a pack. 
Weird thing about my doc...which I think I will change...she will never recheck anti body levels...told me it was for only for diagnoses. Ultrasound showed huge perfect bite mark out of my thyroid, just like a sandwich bite. I think for me, if I could go in when I felt like this and see if anti bodies are high or low I could better fiqure this swinging out, maybe. Not saying I would want it for sure but if they had something for us like the diabetic home testing kit, I just think I would get the hang of this a little more. Im always quessing if im hyper or old extreme hypo. Now throw in perimenopause.

I have been dealing with this and was able to work out of my home...now I must get an outside job and im scared to death that i would mess it up, I just gotta get this in some sort of order....ive read and read, try to enforce all the advice and the swings are still to big. Is there something im missing? Is there something else to try or drop? I will cut back the smoking until I can quit.

Also, iodine is new for me, been so so scared to mess with it....potassium, ugh! But last nite it felt so good for 15 minutes...anybody had success with it? It felt so good and max level is 50 can I 25 in the morning and 25 at nite? Or just as I get the uber swing symptoms?

Little bit worried, not much, but then it makes me think I should worry a bit more is the hashitoxicosis? What should I look out for as far as the difference between swing and running to er? God knows id probably write it off! 
Thank you in advance.


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## sjmjuly (Mar 23, 2012)

The smoking alone would put me over the edge. Not judging, but I am sure it doesn't help your heart palpitations.


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## jenny v (May 6, 2012)

Do you have copies of your labs? If not, I would recommend getting copies of everything and starting your own file. You need to make sure they are testing Free T3 and Free T4, not just T3 or T4. Also, just because you are "in range" on those labs doesn't mean they are the correct range for your body. Most of us aim for FT3 and FT4 in the higher range of the labs.

Not judging here either, but I think it's good that you are attempting to stop smoking, too. I smoked in college (before I was diagnosed with thyroid problems) and it would make me super jittery and give me heart palps.


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## smiths (Aug 7, 2013)

Im in for the quiting smoking....if that does the trick, I will hate myself for not quitting before! I was just a little worried it would mess with anti bodies and make me feel worse.....use to get into that with exercise b4 hashy diagnoses. Exercise thinking I was building energy...haha!
I wil keep you informed... will cut back extreme today!

Thanks and any other input is so so wanted.

My records are online, dont like the idea, but it is so helpful. She tested my free t4 last time but the t3 does not have a free in front of it. Making an appointment for new doc that they say is good with thyroid issues....but I know great docs are hard to come by.....fingers crossed.


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## Andros (Aug 26, 2009)

smiths said:


> Diagnosed in late 2010 with hashimotos....little over 12 years after docs stopped listening to me and wrote me off as nuttty im sure.
> I have lots of things figured out now, stop the thyroid madness help me a lot and has kind been my guide. But im still having some issues and wonder what you think.
> Most of the time I am ok ish. But I can get on a great streak and wow I love it but it only seems to late a week at best. My trouble times are now ovulation and menstruation. I think I swing hyper then.....bad part thats 2 weeks out of my month. If I go with the sttm ideas I should keep upping my meds till they stop. My tsh is 0.01 which my doc is crazy about and wants me to back off but I so want to just get this in some sort of check and get my life back. Dont know what to do?
> During these hyper? attacks I get peanut butter pumping tbrough my heart, i get air hungry and am constantly rubbing my chest and raising my arms above my head to get a deep breath, im shaky, and my body feels like im stuck in a room with a blue grass banjo player, ( no offensive, just the speed and tone makes me a little crazy) I could cry at a drop of a hat, and my lower part of legs have massive cramps.after a few days of this I get the bottom feet pain. I also get loud tinnitus. ....BONUS!!
> ...




The very most important number and range we need to see is your FREE T3.

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3

http://www.stopthethyroidmadness.com/free-t3/

If you have been over to STTM; you know how important this is.

And I strongly recommend you get a ferritin test. Some of your symptoms suggest it.

Ferritin (should be 50 to 100; the closer to 100,the better) 
http://www.thewayup.com/newsletters/081504.htm

3 grains of Armour is nothing to be alarmed about depending on where your FREE T3 is at which for most of us, it is best at around 75% of the range provided by your lab.

I am 70 year old woman, very very active and am on 3 1/2 grains. Have been for years and years.

You are right about the smoking. I am now an ex smoker and have been for years but I was in fact self-doctoring w/o knowing why.
http://jcem.endojournals.org/content/94/4/1324.abstract


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## smiths (Aug 7, 2013)

Andros,
Good to know about 3 grain not too much.....thanks so much. I was horribly horribly anemic when I was pregnant 20 yrs ago...pills werent enough...took the most allowed and had to get shots in my bum twice a week.......they left giant leaking brown patches on each side ofmy bum.....I called them my cow patches they stayed so long after that I called the company and asked if they would ever go away....just my luck, the guy on the phone said "oh yeah, we know that can happen and no we have no idea if they will ever go away, can you please call us back if they do." Having my husband leave mid stream of my pregnancy, all I could think was I will never ever be able to date again..hahaha. I can chuckle now.

Just been a little nervous about constipation, I was taking high potency iron pill once a week.
Of course, when I told doc how anemic I was she dismissed as only pregnancy and didn't test. Should iron be on higher side as well?

Thank you all again so very much


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## Desertrose (Jul 30, 2013)

Are they checking your female hormones? What makes the doctor suspect you are going through perimenopause as opposed to it being Hashi's related? 
Some doctors seem to outright deny the idea of perimenopause and others want to blame it on absolutely everything that a woman presents with.

To be honest though, my female hormones are always completely "normal" and yet I developed endometrial hyperplasia (very thickened lining of the uterus) which is caused by too much estrogen OR, or not enough progesterone. So even though they kept telling me "no, you are fine, it is NOT perimenopause" they still wanted to put me on a progesterone only pill - (which I refused and started using progesterone cream for a while.)

In the end one doctor even put me on HRT because he believed that despite the test results that all my symptoms screamed perimenopause. 
As soon as I got the HAshi's diagnosis I stopped the HRT because I didn't want to be on it in the first place but desperation leads you to do all manner of things in the quest to feel NORMAL!

They say that "the thyroid is the spoon that stirs the hormonal soup" - so I have no doubt that all these hormones are interlinked and play off one another on a day to day basis!

Perimenopause can cause some really weird symptoms, so I have read, but so can Hashimoto's. Funny too isn't it that it's very common for women going through perimenopause to HAVE thyroid issues.

Your fibrous breasts... I was reading just the other day that this can be made worse, or possibly even caused by too much estrogen, OR not enough progesterone.
Funny thing with me, when I made a huge lifestyle change, cut out all alcohol, followed a low fat, low carb, low sugar diet, my fibrous breasts became soft unlumpy NORMAL breasts. 
Because alcohol is converted to SUGAR by your body, and excess sugar can cause weight gain...and weight gain causes too much estrogen, well, it all makes sense to me now. 
Usually in true perimenopause estrogen drops, so your body actually tries to compensate by storing more body fat, because this creates estrogen.
There is a REASON we go through "middle aged spread". It's your body trying very hard to restore a balance.

But we're being overloaded by estrogen today. It's in foods (hormones given to animals) chemicals that mimic it...in lotions beauty products... SOY and soy is in so many foods. I see you mentioned you're all organic, gluten free so it sounds like diet wise you're probably doing all the right things.

But perhaps there IS some kind of imbalance in the female hormone department going on with you? Funny that it's at ovulation and menstruation. I wonder which hormones exactly are being pumped into your system at those particular times? I'd be curious to see what your thyroid levels are if tested during those times.
I think whatever these blood hormone tests they do are really unreliable. I've heard that saliva tests are better but doctors never seem to order those.

And...the smoking thing. What do you mean by non chemical, just tobacco? Curious. Do you mean like roll your own?
I stopped smoking two years ago and use an electronic cigarette. I would just never have stopped otherwise.
Cigarettes gave me palpitations and all manner of crazy heart things - ectopic heartbeats - awful! 
Though I still use nicotine (weaning down very slowly now) I have never felt better in all my life and all the heart things, all the shortness of breath etc has completely gone.

And yes, definitely get your iron levels checked. Makes sense that if you feel a bit short of breath (which low iron causes) it will make you feel anxious and anxiety can make you feel jittery and even MORE short of breath...as well as induce palpitations.


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## StormFinch (Nov 16, 2012)

Unfortunately the act of burning tobacco causes a lot of the chemicals found in cigarettes. Like Desertrose, (congrats rose!) I quit smoking by using an e-cigarette over 3 years ago and have no plans to stop using it unless the government finds some way to make me.  Nicotine by itself isn't much worse than caffeine, and I function better when using it. There have been several studies showing that ecigs have very little if any of the chemicals found in cigarette smoke and are in fact closer to a nicotine inhaler in composition. If you've had trouble quitting with other methods and would like more info feel free to let me know.

I second (or third?) the suggestion of having your ferritin checked. Low iron can also cause high heart rate and palpitations directly and tends to fall during menstruation. Ferritin is best kept at around 100.


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## Desertrose (Jul 30, 2013)

Good for you Stormfinch! Both my husband and I use them, my stepmother, brother and his girlfriend are on them now too. We're all very happy vapers


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## hashimotocoaster (Mar 22, 2013)

Slightly OT, but I'm so happy (if that's the right word) to hear other people here talking about smoking. I never mentioned it because I thought I'd get beat up! I smoked since I was a teenager--I quit cold turkey in September, though in retrospect I wish I'd used the patch or an e-cig, because I was a monster. My thyroid was already circling the drain, so I'm not sure if my quitting has contributed to my TSH spiking despite having my replacement dose increased, but 98% of the heart issues I was having are GONE.


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## StormFinch (Nov 16, 2012)

Excellent Desertrose! Happy vaping! 

No hashimotocoaster, this definitely isn't one of those quit boards. Even mentioning that you are using an e-cig to quit on some of them will get you beat on.  At least you now know that if you backpedal there's an alternative to going back, and congrats on quitting! 

Cigarette smoke does contain alkaloids that control inflammation and antibody production, there are plenty of instances of people quitting only to develop autoimmune disease a short time later, but at the same time all the other toxic substances are further wrecking the thyroid as well as other parts of the body.


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## smiths (Aug 7, 2013)

Hello all,

Let me try to answer all the questions....glad to hear all ideas.

Smoking tobacco is American spirit, not the others with jet fuel and embalming fluid. I got the nicotine gum to quit, but wondering if the nicotine is going to do the same...but I got the gum so it wasnt coursing thru me all the time. Just have for craving times.

Progesterone was checked on 5/12 it was at 19.27ng. Estradiol was 121 pg. Testosterone was Total was 25 and free testosterone was 2.0. I asked doc at last visit if I needed to put on progesterone cream when all these symptoms happened, she told me it would only make everything worse, because everything seems to blur symptoms into everything else I took her at her word, probably because I cant stand the idea that these times could be made worse. But I still wondered.

Diet......no soy. I can only drink champagne, so thats not happening every week . If I drink anything else I get horrible leg pains and cramps. I always explained it to drs as electric "energy" running up and down my legs..I cant sleep then, so no I stay away. I also eat my coconut oil every other day and everyday if I remember.

When I have asked docs to test me during these times they say its not necessary because we all knew my issue....ggrrr. but instead of blaming I have taken a proactive step and im getting a appointment with a new dr.
I am just so frustrated with the blur.....like desertrose said, the stir of the pot. I was so sure that after 12 yrs and they "solved the problem" that naively everything would go back to normal.

So hypothetical, if im going hyper during these times.....would I up my does? Would I back off for 2 weeks out of the month? Dr has just put in my head if I take to much my bones fall apart....ugh!
Uncertainty with a bad thyroid feels a bit schizophrenic. .....I decide im going to take me and see if everthing stops and soo as I get shaky I worry thats the time I took too much.

Side note this time the tinnitus has not gone away. It usually comes and goes with whatever this is. Little worried. Jaw clenching is back as well. But heres what getz me......tinnitus itself caused by (from reading online) hypothyroidism, hyperthyroidism, perimenopause, vitamin deficiency. So then I get "stuck" again.

Thanks again, thanks for listening, thanks for not running away with the frustration. My family just gets fed up with it, im just so fed up too.


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## Swimmer (Sep 12, 2013)

Message to Smiths: When you feel that you need to take things in your own hands -- that when you need to go get a second opinion.

Write down every symptom you have and have had (title them current and former). Lay out your symptoms and go to another doctor. Get help.


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## smiths (Aug 7, 2013)

Swimmer......you're right. And I guess when I boil it down im *****ing about not having good docs.
I was so hopeful I went to a new doc and did exactly what you had said. He wouldnt read it until 2 minutes before my next appointment, then thought I was goofy, I guess it was because it was only the second time I saw him and had dropped it off in between appts.

I told him I needed help on first visit... I was wondering if my cortisol could be low and causing pain.....he ran the tests.....the nite b4 I had felt uber hyper...so my cortisol came back at 24.5.....after he read my letter and test results, came in the room, and told me he was going to put me on cortisol supplements...I looked at him cross eyed, told him from those results I shouldnt be.....and left. I could tell by the way he spoke to me and he even pretty much said he didn't know what he was doing, I find it hard to believe theres doctors who have never dealt with a thyroid problem. I know I had to look screwy that day as I was still in "hyper mode" for like the 3rd or 4th day and wanted help desperately, I just come across needy or scary. Im sure he was checking my arms just to make sure I wasnt a junkie. 

I have a short tolerance too I guess, I told drs for years something was wrong, b4 thyroid issue and I was dismissed. "They" finally "discovered" I had a pheochromocytoma. I had begged doctors to just put me into hospital and run all the tests till they find the problem......b4 pheo diagnoses, b4 hashy diagnoses.....im starting to feel that way again. I know this maybe too big 4 here but I wonder if pheo "ruined" something in my body, if I deleted something in my body that was suppose to last a lifetime.....with a pheo your body is on hyper drive until it gone.....but doc believe once its out , its over...I dont know if I believe that. Read the b4 tumor comes out that drs put ppl on potassium. I dont know why, they didn't me ( I was the first person in my city to every have one removed, which I didn't know, I should have been sent to someone that had already done that.) and wonder if there is an iodine/ potassium connection here.

Idk....I quess my dream dr knows everything about hashimotos and residual effects of tumor who is an obgyn....I just believe there is something to the idea that both of my issues are endocrine issues.

Anyway, down to quarter pk of cigarettes and chewing gum every other time.


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## Desertrose (Jul 30, 2013)

If you upped your dose during those times you feel hyper wouldn't that make you MORE hyper?

That electric energy running up and down your legs...that sounds so much like restless legs syndrome. If I ever have a glass of wine these days it makes my feet itch. Weird!

Bottom line really as frustrating as it is, you just need to keep searching....keep going to different doctors until you find someone who will take all this seriously.


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## StormFinch (Nov 16, 2012)

Smiths give these resources a try for doctors in your area that know their stuff: http://hypothyroidmom.com/top-10-resources-to-find-a-great-thyroid-doctor-in-2013/. The ThyroidChange site is the most current.


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## smiths (Aug 7, 2013)

Desertrose, last time I upped my armour during one of these episodes I believe it stopped it quicker..then I stayed on that dose until the ovulation and my body went super shaky then....so I lowered again.......I believe that I know, haha, that something is going extreme when ovulation and mens come..... just dont know if its hyoer or hypo.

I just remember reading that if swings keep coming that I must take more to have swing stop.....
I havent said either that when I started on armour that my doc thought I should be on 30 mgs daily......of course, it helped just not for long. And I upped it and told my doc, didn't ask.

Also, what what makes me believe im not on enough is, not only the swing, but also I can get in a good run of feeling ok, but any stress on my body (mental or physical) my body poops out.
Sttm always says take more, since going back to 3 grain, belly bloat back too, havent had it this bad in over a yr.

As I write my internal dialogue is saying I should go up again and see what happens with smoking being mostly cut out and see what happens.....I let ya know..

Stormfinch, thank you for the site.....I will explore.


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