Alli, Ruth, Enigma, Shiela...

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Alli, Ruth, Enigma, Shiela...

Post  Cluelesskitty on Fri 09 Sep 2011, 1:15 am

.... Kim, Angela, Vicky, Om, and other terrific peeps - where are you and how are you?

You are being dearly missed, and we worry about you!!

Please let us know how are you doing, dears!! Even if just by the way of one little line Smile

Risa

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Re: Alli, Ruth, Enigma, Shiela...

Post  Paradox on Sat 10 Sep 2011, 2:02 pm

Yes, yes....where are you? Hopefully you have found the cure that works for you and are out enjoying the sunshine of life. (that was an old song from the 70s wasn't it?)

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Re: Alli, Ruth, Enigma, Shiela...

Post  Ruth on Tue 13 Sep 2011, 9:14 pm

I'm here, just been really busy with stuff, grandkids, boating etc. etc.

Still getting lots of headaches but not too many migraines, just once in a while.

I hope to participate a little more now that life has slowed down somewhat!

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Re: Alli, Ruth, Enigma, Shiela...

Post  Enigma on Wed 14 Sep 2011, 8:55 pm

Hi Guys

I stop in from time to time to see what you guys are up to. I don't feel much like posting as I'm usually not in the best of moods. These last 6 months have gotten pretty unbearable in the migraine pain department. Almost daily now. In mid July I wound up leaving work and heading to the hospital with some scarey symptoms. (I wrote about it here.)

Turns out I have Graves disease (Hyper thyroid) to make things worse and probably the reason for all the excess pain as this is a hormonal issue. Right now I am 68 days away from my appointment from THE migraine doctor. (I've been waiting 17 months now and it has been a test in endurance). My Endocronologist agreed to wait until seeing him before making any permanent decision on my Thyroid until then. So I am complete limbo as to what to do as a gamut of symptoms take over my body while I adjust to meds.

Recently I am finding out that when I am Hypo (because my thyroid goes up and down) I am in more pain than Hyper. Problem is, when I am Hyper, my emotions go through the roof and my life expectancy is shortened....but I am in less pain.

So now I sit here knowing that in my hands I can decide to refuse treatments and live the life of a rollercoaster and shorten my life, but have less pain, or, run risks that the Endo wants me to take for my health to balance me out, but be in more pain and maybe pain every day of my life.

You can imagine what this does to a person's mental state while I wait for the Neurologist who may or may not help me. I won't say that I am necessarily suicidal but some days maybe I do have a bit of a death wish. I have caused a lot of comotion at work and in my family that is totally out of character for me as I demanded to be heard and respected. It got me a big fat raise, and my family to back off, but it doesn't make me happy.

I go to this other support site that is about chronic pain and we give each other support. It's not about headaches or back pain or whatever ails you so much as it is about pain and just getting through the day. I post journals to get the anger and frustrations out and that is really helping. It's where I need to be right now. I feel like I've gone to intensive care until things have changed.

Sorry for not being there for you. I so hope this ends soon.
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Re: Alli, Ruth, Enigma, Shiela...

Post  Cluelesskitty on Thu 15 Sep 2011, 7:56 pm

{{{{Oh, Enigma }}}}
Sad

My heart is breaking for you, you poor thing!

What a misery your must be now in! in so much pain! I am so sorry for you!
I wish I could help somehow. I am glad you have that other forum where you are in company of people who can support you, too.
Please don't forget that we are here to support you, too! and if you need or want to email me, please do it anytime!
I understand what you mean about not being suicidal but having death wish - wishing to die but just wanting to just expire rather
due to a continuous pain, stress and misery than actively doing something about that, right?
Been there, thought that, my friend...

I am wondering why you have to do nothing in regards to your thyroid problems before you got o the neuro?
Is that because you are afraid of more pain and no adequate pain relief?
Or you are not quite convinced all this pain is related to your thyroid?


I was researching a bit Graves and Hashimoto because my own thyroid tests result were kinda unclear - my TSH was so low it
was very close to be too low- so close to also having Graves, but my T3 and t4 were still in the norm.
But my anti -TPO were triple over the norm. My dr of course doesn't know what to make of it, and doesn't think it is necessary
to make anything of it, lolol, especially how my latest TSH was in the norm -1.08.

But I looked at the symptoms online, causes etc and I think whatever you would do to your thyroid to properly balance
it out, it would only help you M wise because the way I figure it out the moment you go from hypo to hyper - that's when you start feel better. So you must be fluctuating.

If you have no fluctuation but stabilization, then there should be no M either.
Recently during my visit to PL, I met a friend who happens to have also Graves'.
She told me had the enlarged neck, and she was suffering severe M
before she was properly dx, and once she was put on right medication her M practically disappeared.
So that's a good sign.

I am thinking 60+ more days to see your neuro is a long time. You can always go off the medication I suppose, if you think it is
doing more harm than good, especially when it comes to your M, sweetie?

Lots of gentle hugs and lots of love,
please do not lose touch with us, we DO care about you!

Risa

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Re: Alli, Ruth, Enigma, Shiela...

Post  marion on Thu 15 Sep 2011, 8:20 pm

Enigma,

My goodness, that sounds too familiar. Started thyroid hormone replacement 3 weeks ago. Started allergy desensitization injections five weeks ago.

After thirty years of looking for answers, now almost on hands and knees praying this helps.

Why are they saying medication for hyper will shorten your life though? My mother has been on hyper (graves) medication for years, shes 75 and has years ahead of her.

If you are running hyper/hypo I am guessing you have antibodies attacking your thyroid and possibly the thyroid receptors?? The thyroid antibodies breaking off chunks of your thyroid which gets disolved into your system sending you hyper and then the thyroid being damaged can't produce enough hormone leaving you hypo. If you have receptor antibodies as well the whole situation gets even more confusing.

I can offer that once the thyroid becomes very damaged and you revert to totally hypo, your symptoms will change. Whether for the better is debatable, but change they will. I went from horrible m's that left me devasted for weeks, to a continual headache and continual visual aura. As I said whether this was a plus or not I'm not sure. Ergo I post very rarely nowdays.

I was started on a mild dosage of thryoid (a sudden large dose can prove bad for people with heart conditions.) Within three days I reverted to a full classic m. Problems with eye muscles lessened. Up we go, down we go. Three weeks down the track I have doubled my dose today, and waiting.....

I wish I could reassure you the replacement hormone will work, you can guess how much I am relying on it, but make sure you have someone who knows what they are talking about. Thyroid is even more controversial than migraine. I know many here will be throwing their hands in the air, going no it can't possibly be. But I wouldn't wish seeking knowledge and treatement of thryoid on my worst enemy. Your down and out because of your hormones and somehow have to get through to doctors that you don't need a damned antideppressant, you want to know whats wrong and treat it!!!

Hope you get through it and find someone to help. Good luck - really mean that.



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Re: Alli, Ruth, Enigma, Shiela...

Post  Cluelesskitty on Thu 15 Sep 2011, 9:01 pm

Ergo I post very rarely nowdays.

You are being missed, too, Marion!

I am sorry you too, have a bad spell health wise. I hope it is only a temporary spell.

I was wondering if it is possible to have both either hypo or hyper -thyroid and Hashimoto?

Risa

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Re: Alli, Ruth, Enigma, Shiela...

Post  marion on Thu 15 Sep 2011, 9:52 pm

Yes both possible Risa. Found this out to my detrement.

What has been accepted medical practice is that if your tsh is in range you are fine. However if your antibodies are attacking your thyroid you will swing. Imagine the ab's attacking the thyroid. Big bit falls off, gets absorbed into your system so your tsh (thyroid stimulating hormone) goes down with this, albiet by a damaged chunk of thyroid - hyper.

The antibodies are reduced for a while, but your thyroid isn't well, so can't produce thryoid, so after a while your tsh goes up looking for more thyroid - hypo.

When you have antibodies attacking your thyroid - hashimoto's. Attacking your thyroid receptors which acknowledge you have hormone - graves (but if they are not working properly due to ab attack, your body produces too much hormone because the receptors haven't told the thryoid the hormone is around.

I have both antibodies attacking in high numbers so swings and roundabouts. On my third blood test in two years I finally fluked the right day when my tsh was high. Tsh being the gold standard of thyroid I can now be treated. I truly believe my thyroid has swung up and down for 25 years minimum. Going with it hyper and hypo symptoms along the way. I think I have settled into permanent hypo finally. Now waiting to see what, if anything, the extra hormone will fix.

Thyroid ab attack has I feel been far too simplified by the medical world. After if your own antibodies are attacking a part of your body, it can't be right. More to the point the body part under attack is being damaged.

You can of course have problems with your thyroid that aren't ab related. I am only just managing to get a very partial grip on the ab side of things.

So if in doubt about your tsh, ask for thyroid and thyroid receptor ab tests.

Hope that makes some sort of sense.

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Re: Alli, Ruth, Enigma, Shiela...

Post  Cluelesskitty on Fri 16 Sep 2011, 3:42 pm

Marion, thank you so much.

I will write your suggestion down, and since I am booked to see a gynecologist in late October I will talk to her about that.
She used to dabble in endocrinology before, so I hope she'll know what to do about it.

Stay in touch, Marion, please, don't be a stranger! I love you

Risa

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Re: Alli, Ruth, Enigma, Shiela...

Post  Enigma on Fri 16 Sep 2011, 9:56 pm

Hi Guys, thanks for your support and nice talking to you again.

In answer to your questions. I am afraid to make the wrong choice because if I choose the wrong solution to thyroid, I could render myself in more and continual pain. The medication is not the problem, it is the permanent solution that the Endo is pushing for. Radiation. Being Hyper seems to be better on my head, but it is harder on the heart and eyes and emotions and my other organs that shortens my life. Being Hypo slows me down and lengthens my life nicely, but I'm read that being hypo means that I'm more suseptable to pain and the narcotics don't work so well. I'm the one that has to ultimately chose and my Endo has never had a migraine patient and I'm willing to bet my Neuro that I am meeting probably never had a Grave's patient. Thyroid disease is not an exact science by any means.

Hugst to you all for your care. It means a lot to me.
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Re: Alli, Ruth, Enigma, Shiela...

Post  marion on Sun 18 Sep 2011, 7:52 pm

Hi Enigma,

"Thyroid disease is not an exact science by any means."

Isn't that an understatement. Do you have antibody problems or lumps or something else that our wonderful bodies can throw at us affecting your thyroid?

Into my fourth week of thyroid medication. Just still praying something comes of it. I really don't know what I will do if it doesn't have some effect on my health. Trying so hard to stay positive but nothing as yet seems to be changing, except I had a totally different migraine 3 days after starting meds - (Little aura, lots head pain) and most of the gremlins of my health seem to have reared their heads in the last month.

Starting, as you can probably tell, to get rather down in the dumps.

Do you know a doctor who has a grasp on both aspects, the thryoid and migraine, or am I being way too hopeful? Even a gp if you could throw what everyone is suggesting at him/her, and ask what they would do?

Gets so confusing being a layman trying to understand all this.

Best of luck.

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Re: Alli, Ruth, Enigma, Shiela...

Post  Enigma on Mon 19 Sep 2011, 8:00 am

Hi Marion

For me it is antibody and hormones but no lumps or eye problems as yet. It takes about 4 weeks for meds to kick in and eratic emotions is a part of the disease, but as you stablize, so does that. I have yet to meet a Neuro that understand migraines, let alone a Neuro that understand Endocronology, I'm sorry to say.

I did get a lot of aura when I started meds too. So you and I are starting on opposite sides of the boat but we keep swinging past each other with the med adjustment so we share the same sypmtoms from time to time.

Hyper you can't sit still and your heart beats faster and you feel euphoric, but you can't sleep and if you have a migraine, it hurts more than usual because you are doing more physical movement. Sooner or later, you crash from exhaustion and are depressed and physically feel like hell and will have a migraine (if you are a migrainer). Hyper you lose weight and you tend to talk fast.

Hypo you are feeling drained and sleepy all the time and easily to be feeling blue. You ache more so migraines hurt more (if you are a migrainer) and from what I have read, narcotic painkillers don't work so well (not sure on this one). THere are more Hypo patients than Hyper.

Would you say that was accurate on Hypo? Or is there more to it? I live in Hyper land more so I don't know, but I would like to know more as the Endo wants to make me more Hypo via Radiation.

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Re: Alli, Ruth, Enigma, Shiela...

Post  marion on Mon 19 Sep 2011, 6:42 pm

Hi Enigma,

I think your explanation of hyper/hypo is right. When I was in my 20's and 30's my son has made the comment that I never slept. Looking back at how much I crammed into my day, I would say I must have been very hyper - then would crash for days on end not being able to get out of bed. This would usually be started with a migraine.

I never understood how most people with m's could continue next day, I would be a vegtable for at least a week. This could happen monthly, weekly or three monthly with no clues as to what changed. So in retrospect I think I was hyper, with big hypo crashes. What is a mystery to me, is it the thyroid crashes causing the m's?

My m's are so sudden. I'd be fine, then instant knife through the eye with crazy aura, then splat on my back for a week - always in the past blaming the m's, but now I have to wonder was it a hypo dip? You would think it would be a gradual sinking down of energy as the hormone level dropped wouldn't you. But it never was.

Have the swings affected my life span? Well the crazy thing is, until two years ago when I think I became much more regularly hypo, I was the physically strongest woman I know of my age. Not arobically fit by any stretch of the imagination, but could go for hours doing heavy chores like landscaping etc.

Because of the rib pain, costocondritis, that I get, I have had my heart checked, and as of a few years ago wasn't bad for my age. (I am a packet a day smoker and drink like a fish so that was a pleasant surprise). The addictions are a strange thing as I am usually incredibally sensible. However the strangest research I have ever come across re the thyroid is that smoking seems to hold thyroid antibodies at bay. The thinking being that oxygen starvation seems to hit this sort of ab very hard. So there's a weird thing for you. The alcohol, by the end of the day after starting by getting children off to school, put in a ten hour day in our business which was in trouble, was the only thing that kept me going. Without it I would fall on the couch and really have to push myself to get dinner. Research into alcoholism is showing that endorphines are stimulated by a few glasses of the old vino, and your adrenaline levels raise. So to get through the day it seems likely I lived off adrenaline rather than thyroid energy which is bad.

So in some ways I think I have probably done terrible things to my body, but in others (being physically very active) have been pluses. Also I have always eaten very well.

Having friends who have never done the wrong thing by their bodies go from cancer or tumors, others who haven't living to ripe old ages, I am coming to the conclusion it is luck of the draw.

Hyper was definately easier to live with, I could achieve like you wouldn't believe, but the crashes were dreadful. Being hypo I am feeling very much like a blob, not socialising, not getting enough done. Haven't answered your question at all have I?


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Re: Alli, Ruth, Enigma, Shiela...

Post  Shiela Stewart on Mon 26 Sep 2011, 10:27 am

So sorry I've been MIA. Life in my house has been crazy to say the least. Still struggling with my daughter and her bipolar and Aspergers. My oldest son moved back home and its been a struggle to get him to find a job. All of this stress doesn't help my migraines or Fibro. My writing has suffered as well but that's not to say I haven't been releasing novels. I've been reworking and editing some old stories and have submitted them. I have two new releases, A taste of Humanity and Awaken the Demon. In a few months Offer the Demon will be relased so that is something. I'm hoping soon that passion to write will coem back to me, until then, I'll continue fixing up old stuff.

I see some of you are having a rough time right now as well and I want to send out a huge ((((((HUG))))) to all of you. What doesn't kill us makes us stronger. And if that is the case, I am now the incedible hulk. LOL
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Re: Alli, Ruth, Enigma, Shiela...

Post  Cluelesskitty on Sun 09 Oct 2011, 4:04 pm

Shiela, how are you doing today, dear friend?

I am so sorry you've been thru so much turmoil lately. You do are VERY STRONG woman, and don't you forget that, girl.
I know it sounds so cliche said out loud, but it's true! Having children with emotional issues and battling one's own
severe M and fibro is not a picnic in the park - you know what I mean, sweetheart.

I look up to you dear Shiela, how you manage it all - working, family, your kids problems and your own - I am falling apart
as soon as I can't get a decent night sleep!

Sending you lots of love and gentle hugs

Risa

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