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in reply to: Unsure about response from Endo re: Eye problems #1176618

Sorry, he’s and Endo. I have been to an Opthamologist prior to seeing this endo.

I wrote this in another post but that opthamologist told me that whether he could see the whites of my eyes when I looked directly at him was his diagnostic criteria for Graves’ Opthamolopathy. That seemed a little curious to me too.

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in reply to: What does stable feel like? #1176608

hypo hell? Oh Dandy lol never heard that before…

Well aside from the other symptoms mostly I’m just tired, depressed and unmotivated all the time and can’t drop weight to save my life even @ 1500 calories a day. But in all fairness, HypoT is a whole lot less painful and distressing in some ways than HyperT was.

I’ve got the 5mg, which makes it perplexing why the first (ex)doctor dropped me from 20 to 10 mg. But last week I got a letter in the mail from his practice stating he was no longer going to be a part of that practice, and no forwarding information, so that could have something to do with it. And yes, splitting the 5 mg is most certainly possible.

[WWWI2]

in reply to: What does stable feel like? #1176606

This doctor IS my second opinion lol. And yes, I (think I) do have confidence in him. Long story short, my first doc put me on 20 mg meth, and when my number neared normal, he dropped me to 10 mg. The results were devistating ( body pain I’d never experienced before and then let me hang like that for a couple months until he put me back at 15 mg meth) and I quit him.

This second doctor put kept me on 15 mg and I started to go hypoT and he added back levothyroixine. The first round (.50 mg) wasn’t enough and he upped it (to .75 mgThe tests just came back and I’m still hypoT.

He now wants me to drop the meth to 10 mg and up the levothyroxine to 1. To be candid, I’m a little nervous about dropping the one and upping the other because as mentioned above when I was dropped to 10mg last time I was in terrific pain. My hope is that the drop at the time was just too steep and it will be more managable this round. It better be because I’m out of the vicoden I was prescribed last time lol.

I guess we’ll see how this goes. If it the changes in dose turn out to be one big uhm cluster, I may be onto my next MD. I like your suggestion about altering the dose, the biggest challenge is I have yet to get in normal ranges and the fact that it can take 4-6 weeks to know what’s working, is making this a very extended process. But if this dose puts me back to hyper, at least I’ll have a better baseline with which to work. With that, if 10mg meth isn’t enough and 15 meth is too much, then alternating or splitting may be a very viable option.

Thanks!

WWWI

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in reply to: Memory Tips and Tricks… #1176365

If it’s something I need to remember for the next day(no smartphone here), I know this is really low tech, but if I write it on a piece of paper and stick it in my bra. At night I have often found reminders of something I totally forgot. I used to write on my hand but that went out of vogue lol

[WWWI2]

in reply to: Frustrated with doc #1176212

Bobbi,

Thank u for responding. It was my emotions that were out of whack but it was all of my senses. Went to take a drive with someone and the sun was just way too bright so we decided to avoid driving directly south. Noises were too loud, etc. It’s not helping that things are stressful at work (they call it work for a reason lol), so many egos involved. I find I’m so sensitive to the mood shifts of others.

I called my new doctor’s office and while the original situation hasn’t been resolved, they did tell me to up the beta blocker and thankfully it has helped to turn down my CNS and calm my innards down some.

It’s so funny that you mentioned it because I DID watch Jumping Jack Flash recently. I hadn’t seen it in years. It’s a great escape movie. I loved the movie and I adore Whoopie Goldberg.

Thank you for validating what I’m going thru, I think that is probably one of the best things you could have done. I forget sometimes that there is legitimate reasons why things are so rough right now. And then I feel horrible for not feeling or behaving as I think I should. I’m hopeful that things will improve over time.

Thanks for your kindness

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[WWWI2]

in reply to: Frustrated with doc #1176210

Khadijah,

I have a list of endos from my primary care. I think right now tho I’m going to see how he responds at our next appointment and see how he intends to proceed. Odds are if you see another post like this one, I’ll be doctor shopping lol.

Thanks for taking the time to respond

WWWI2

[WWWI2]

in reply to: Beta Blockers – Has anyone been on them long term? #1176309

Gatorgirly,

I’m on Atenelol. Was put on a little over a year ago for unspecified tachychardia. Didn’t know the cause. Do now lol. I’m sorry you are in this, but I’m glad not to be alone

So you were able to lower the dose after a time? That’s really good and gives me hope.

My concern, which is that while I appear to need them now, some of us can become dependant on them (not like addicted to heroin lol, but that our bodies adapt to using them, where we are unable to get off of them)? From the searching I’ve done online, there is some information about withdrawing from them, but not the amount I would expect to see if they were hugely problematic for most people.

You are correct, The bad cholesterol can go up and the good down. It can also mess with blood sugar levels

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in reply to: Frustrated with doc #1176208

Bobbi – I can’t imagine there is anything that compares to the loss of a child. I’m so sorry. I can’t imagine what you must have gone through.

Truth is I’m just so angry, tired, sad, distressed about so many things that are beyond my control at the moment. It just seems to be coming from all sides and I’m feeling very vulnerable at the moment and there have been and are just so many more hurdles to overcome.

I feel like an open wound with no protection except blindly striking out at any perceived (or real) wrong. I just want to withdraw and lick my wounds, but circumstances disallow it. I have lost my balance and am not quite clear how to get my equilibrium back. I’m sorry to be spewing all of this here. I just want to take my ball and go home. Ya know?

This will pass…just not sure when

Khadija – Sadly this is my new endo lol. I just dumped the last one ( my first endo) for being a boob head (in this case it was both him and his office administration that screwed up). The final straw was that he dropped my methamizol significantly (I don’t blame him for trying that) but then when things went very badly as a result, he told me to see my primary care to address the debilitating pain as a result of the drop, with her and then he would “follow up with me” at the appointment scheduled over a month out. My Primary care doc gave me narcotics and asked ME why I was seeing her and not the endo. This was not a man I wanted to over see my RAI. I cannot say strongly enough how much I hate this whole thing.

[WWWI2]

in reply to: Frustrated with doc #1176205

Bobbie,

You could be entirely right. I’ve had some really bad experiences with a few doctors over the past few years and now I simply assume the worst. I’m exceedingly leary of any misteps as in the past I got hurt (lost a gallbladder unnecessarily, misdiagnosis resulting in inappropriate medication management that landed me with a chronic IBD as a result of a drug I should have never been prescribed, to name just two of many.)

I want to have some confidence in this doctor as he appears to know significantly more about Graves’ than my previous endo. But as soon as stupid stuff happens, like this, it makes me exceedingly anxious of what looms on the horizon. I’m simply scared of getting hurt again. I’m angry that after having other diseases I’ve had to learn to contend with, I now have one more where I’m dependant on doctors for my well being.

I’m also having a sucky month with family crisis and holidays that couldn’t have gone worse and I simply don’t feel well. So when I feel, once again, that I’m in a postition where I lack control, am dependant and feel as if I could not only get taken advantage of but it could be detrimental to my health, I just want to scream.

But I have taken your words to heart. I don’t love paying what it’s going to cost, but truth is as costly as it is, that’s really only a small part of what’s going on here. I will try to arrange things better and let them know the financial impact. I will also try very hard not to place the blame for all of my medical woes and incompetent boobheads on this man.

Thanks for talking me down

WWWI2

[WWWI2]

in reply to: Frustrated with doc #1176203

I think what I said might have caused a bit of confusion. I originally saw him in November with my most recent labs which said I’d gone hypo on the methimazol. As a result he added back Levoxythroid to increase my T4.

The next blood test I had was December 19 which showed me still hypo. I won’t see him again until Jan 15th. But when i called to get my Dec results they told me to increase the levothryoid because I was still hypo. They told me that I still needed to see the doc in a month (Jan 15th) but between now and then I don’t need another lab test.

My question is how is he going to know what my levels are and whether I’m still hypo or not without another lab test? What am I going to this appointment for? And no they have turned down my request for a lab test for this appointment January 15 but told me that in order to monitor me I need to go to this appointment. The worst part is it appears that they intended to hold my Dec 19th hypo results until the appointment on Jan 15. but I pushed them to tell me. There is something very wrong with this picture.

Going forward, I’m going to try and get this worked out better, but I just have this feeling that I’m going to go to the appointment and he’s going to tell me what I already know and then have me schedule another appointment soon after, one where I have labs for him.

Basically i think I can just kiss that $400 good bye. sigh…

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in reply to: Anxiety Medications, which are best? #1175924

You are right Kimberly, sorry.

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in reply to: Anxiety Medications, which are best? #1175922

I have very strong feelings about the psychiatric community after my experiences, but I will keep them to myself. As I mentioned, I have a long history with benzos (taken as prescribed, but dependant nonetheless and currently at the end of a lengthy taper withdrawal) so I really feel for your situation. There are a couple good books and a few good sites if you are interested. And sadly your endo is spot on, we become tolerant to a dose and require increased amounts over time.

The only things that have helped with anxiety that have not had the quantity of side effects, but also didn’t possess the strength that many other drugs do, include: Hydroxizine/Atarax – It’s an old school antihistimine by prescription that is used mainly for itching. It is the active ingredient of some OTC antihistimines. It will not remove anxiety but it can temper it for many as it has antianxiety properties. But no weight gain or risk of dependence. It doesn’t help me sleep, just relax a little, but for some it does help with sleep.

The other is a suppliment called L-Theanine. This is derived from Green Tea and has a calming effect as well. You might want to google that one, you can buy it OTC. Like I said, they do not work like or have the potency of benzos or other psych meds, but they also don’t have the side effects either.

Khadijah – thanks for the effort

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in reply to: Anxiety Medications, which are best? #1175913

I just want to say Kimberly, you have a hard job and you manage it with much grace.

Thank you.

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in reply to: Anxiety Medications, which are best? #1175911

Kimberly, I certainly understand your reasoning. I am not going to be able to convince you the value and necessity of her work.

But I will say this, that despite the fact that she is retired, she has and continues to provide much needed support regarding this topic. She still works as advisory to the House of Commons, Parliment – London as noted here: http://www.appgita.com/index.php/2012/05/professor-ashtons-comments-on-the-latest-draft-of-the-consensus-statement-15-may-2012/

I recognize this is somewhat off topic. However, considering that Graves’ is one of the leading causes for misdiagnosis of Anxiety disorders and that Benzodiazepines are often inapppopriately used as long term therapy for Anxiety. For someone to find themselves iotragenically dependant on a drug that is inappropriate for them but find they are unable to take themselves off this drug, or at worst who suddently remove themselves from the drug at great risk to themselves, I feel this is not entirely off topic.

I simply am trying to provide resources for anyone finding themselves in this situation. There is very little help out there for this and yet it can devastate peoples lives.

Ok I’m off the soap box now.

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in reply to: Anxiety Medications, which are best? #1175907

Vanillasky,

I’m sorry I can’t provide you with any suggestions as to what to take instead of benzodiazepines. But as one who is at the tail end of a very long almost 2 year taper from benzodiazepines after over 10 years of prescribed use, I have to strongly concur with your endo.

This link is one of the best resources for information on benzodiazepines, what they do, why they are a problem and how to safely withdraw. If for some reason this link doesn’t pass muster, please look up the manual written by Dr. Heather Ashton. She is a pioneer in the study of helping people safely withdraw from these drugs.

WWWI2

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