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in reply to: Normal? Subclinical? Confused #1182113

Raspberry

That’s the funny (not ha ha) thing. My T4 and T3 are solidly in the middle and my TSH is low (.53) and I’m highly symptomatic. I have scoured the web to find this same situation and have been unable to.

however, as I mentioned in a previous post, I saw my doc and she’s letting me take 2.5 mg every other day (with an initial ramp up of 5 mg once)

I really honest to god don’t know what it means. My doc said some people just have a naturally low tsh. But I’ve got such bad symptoms. She doesn’t believe they are all related to my thyroid, but I know at least some do.

I don’t want to go hypo and she’s checking me in a month to make sure I don’t, but man this is such a balancing act. I’m really glad your doctor is working with you and I hope you find what will work for you quickly. My doc is not a huge proponent, as you suggested, of antibody tests. But I wonder if that would give any more information as to why I’m in the situation I’m in.

Anyway, thanks for such a detailed response. I really appreicate it. I will check AZGravesguy out. Thanks!!

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in reply to: Graves’ rearing it’s ugly head again #1182064

Sue

That was a great post thank you! Your reassurance is greatly appreciated. (and that goes for you laurel and raspberry as well!)

Since I last posted I’ve seen my Endo. She has agreed to start me on 2.5 mg meth every other day. My T3 and T4 are fine so she’s not concerned about Graves at the moment. I asked her why my TSH is so low (.53) and she said some people just are that low. The problem is I am highly symptomatic so she agreed to let me take some meth.

The concerning thing is she said that Meth is not a life time thing and I have about two years in total that I can take it. so I asked her what happens after two years if my tsh is still low and I can’t take meth? She said not to worry about it now and hopefully my tsh will raise on it’s own. I take that to mean that if the time comes, I may have to make some decisions, but for now, I’m just thrilled at the possiblity of relief.

It’s tremendous that you all have not become the slug I feear I will. You give me hope that there can really be other outcomes than what I anticipate.

thank you so much for taking the time to respond

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in reply to: TSH of .7 (range .3-3) #1182103

Gatorgirly

That’s the tricky part. I haven’t been on meds since last summer. I got to see my doctor yesterday and she has agreed to let me take 2.5 mg meth every other day. She sayid my T4 and T3 are fine and so I’m not coming out of remission. So I asked her why my TSH is at .53 and she said some people just have a low tsh. So i just don’t know. What I do know is I’m hugely grateful she’s letting me try this. Otherwise I would commit myself…somewhere because yes I am WAY hyper and miserable.

When my TSH went from 1.2 to .7 and she said it was normal, I got myself some seroquel so I could sleep. I hate taking seroquel but it was the only thing that gave me relief. And over the last 3 or so weeks even the seroquel wasn’t working and it turns out my TSH was .53.

Anyway, we’ll see how this goes, but I hope beyond hope that this will work.

Thanks for responding

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in reply to: TSH of .7 (range .3-3) #1182102

Gatorgirly

That’s the tricky part. I haven’t been on meds since last summer. I got to see my doctor yesterday and she has agreed to let me take 2.5 mg meth every other day. She sayid my T4 and T3 are fine and so I’m not coming out of remission. So I asked her why my TSH is at .53 and she said some people just have a low tsh. So i just don’t know. What I do know is I’m hugely grateful she’s letting me try this. Otherwise I would commit myself…somewhere because yes I am WAY hyper and miserable.

When my TSH went from 1.2 to .7 and she said it was normal, I got myself some seroquel so I could sleep. I hate taking seroquel but it was the only thing that gave me relief. And over the last 3 or so weeks even the seroquel wasn’t working and it turns out my TSH was .53.

Anyway, we’ll see how this goes, but I hope beyond hope that this will work.

Thanks for responding

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in reply to: Normal? Subclinical? Confused #1182110

I’m not sure I understand. You don’t think meth would do anything? I keep thinking if I was OK at 1.2 and worse at .7 and even worse at .53, if I can stop the progression and turn it around maybe I’ll get some relief. you don’t think so?

Would an antibody test be worth while? I know I failed the last one I took.

I know my first indicator of an issue was a TSH of .4 from my PCP. Then tested again and it was undetectable and I went to the Endo from there. But because my memory is sh** I can’t remember what my scores were. I’d have to look back.

Sounds like you are in a rough place. If you slightly increased the meth wouldn’t that maybe improve your symptoms without causing you to go hypo? I’ve heard of every other day increases or half of a pill (2.5 mg)?

I guess the question I am asking is if I have confirmed Graves, if my TSH is lowering, if I’m symptomatic why is there a question as to what to do? What am I missing?

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in reply to: TSH of .7 (range .3-3) #1182100

I’m waiting for the rest of the numbers but my TSH is now .5 and I feel horrible.

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in reply to: Graves’ rearing it’s ugly head again #1182062

I haven’t heard from the doctor yet, although I called and they do have the results but can’t share them with me without the doctors OK.

All I know is if what I’m feeling is not graves, I’m in a hell of a lot of trouble. I can’t sleep, my anxiety is through the roof and I’m in such distress right now. At this moment I am having an increadibly rough time. Speaking of wacking away at ones sanity…

This is HORRIBLE

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in reply to: Graves’ rearing it’s ugly head again #1182059

Raspberry,

It’s helpful to know that it may simply have been too early. Truth is she didn’t take me off to try for remission but instead because she didn’t agree with the protocol of the last doctor. Neither of us expected that my number would be normal but they were.

I did some research early on about the Japanese studies. It appears they had a higher remission rate because they had a very, very strict protocol over a period of years with lots of oversight. They tried to emulate those studies here, but they didn’t follow them as strictly and therefore were unable to replicate the studies.

I really hear you on the ups and downs and the worrying. Over the last couple days, I’ve tried to come to terms with the idea that TT is in my future and that I’m probably going to end up extra uhm fluffy and terminally tired. One thing I’m having a hard time with is that because I was on a block and replace protocol from my previous doctor, which included levothyroxine, when I was put on that my hair began to fall out. So I have this image of me as a hairless, very tired, extra full figured woman (I’m’ already seriously mushy). I haven’t QUITE accepted that yet, but I’m working on it…

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in reply to: Graves’ rearing it’s ugly head again #1182057

Nancy,

Thank you for your response. I think until I get back on the Meth and things calm down some I’m going to be a crying, worrying, angry pile of muck lol. I appreciate your words and I am going to try my best to stop the self harshness. It’s just so hard right now, each day seems to be getting progressively worse. Just want some relief.

Thanks again

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in reply to: Graves’ rearing it’s ugly head again #1182055

Shirley,

I’ve been beating myself up for what I might have done that caused graves to come back. I quit smoking after 36 years in December and I’ve been told that there are studies that show how quitting smoking can cause Graves to initiate. Or was it the edamame (soy) I ate or was it the foods containing iodine? Was it starting a certain medication? was it stopping a different medication?

I cry at the drop of a hat. My brain is non functional and I keep making stupid, stupid mistakes. I got yelled at at a grocery store for parking too close to some guys car and I’m always SO aware of my surrounding and yet I had no idea I’d basically locked him in.

I’m agitated and so impatient and I cry and cry and cry…

But reading your response gave me relief. No I don’t have to figure out how i’m going to get my thryoid out, today. And yes, even tho there are other side effects, I believe that when Meth kicks in much of this distress will go away.

Thank you for your calmness and reassurance. I don’t think I can tell you how much that has meant to me.

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in reply to: Back to hyperT? #1180985

Hiya Kimberly

I wasn’t paying attention to the fact that the T4 was on the low end of normal since my symptoms seem to point to hyperT. thanks for pointing that out (although after googling that now I’m worried about my pituitary gland lol). I get tests in another two weeks and not to borrow trouble, but what the heck would it mean if both my TSH and my T4 continue to dip? Also she’s doing a total T3, not a free T3. Is that problematic?

Thanks.

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in reply to: Back to hyperT? #1180983

Harpy,

Thank you for such an informative response. I have just emailed my doctor with regards to the TRab test. Based on my symptoms, things are not getting better. I hope she agrees to the test and even more, based on the results will allow me to begin treatment again sooner rather than later.

I’m finding it really hard to navigate this process with medical professionals. I think she’s a very reasonable human being but without sounding overly dramatic, I’m in pretty good distress and to “sit and wait” feels very unkind. My gut says she may not know what to do for me which is why she offered me Ambien and want’s me to wait instead of just starting treatment again and that really scares me. She’s my 3rd endo and I’m beginning to believe that the problem may be that I have expectations that while reasonable, aren’t realistic based on the current knowledgebase of most endos. I’m just afraid that it’s only going to get worse from here.

Enough about that. Thank you for the response and just maybe, your prompting me to prompt her for the TRab will get me further than I am at the moment. I really appreciate that.

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in reply to: Back to hyperT? #1180981

Sue – As you mentioned about liberal vs conservative, I think she’ll work with me (hope at least) but I’m a little more hesitant now. I don’t think she’s wrong, but there appears to be so much wiggle room in the levels that this get’s really tricky.

It’s funny that you mention about being so distraught after just a day of this when you lived with it for so long. I had the exact same thought today and was questioning why I’m responding so strongly after only a couple weeks. I don’t know why this is, but it does make me feel better knowing that my response is not extraordinary.

I’ve mentioned in other posts early on that after 10 years prescribed Ativan and, I spent a very, very long time tapering off of the drug. I wasn’t told it was addictive and I was told it was easy to get off of, both of which were untrue. In fact, I finally finished the taper around the same time I was taken off the antithryoids. As a result, I won’t/can’t take benzo’s (valium, Ativan, Xanax etc) or z-drugs (ambien and her sisters). Although she did offer me ambien.

I take atenolol (beta blocker) for tachychardia, Hydroxizine (antihistamine – Yes I know I’m not supposed to with Graves, but sometimes we have to make choices) for agitation and anxiety and Unisom (yes, another antihistamine) for sleep, but dos not help much except to help me fall asleep.

My current endo will usually call within 24 hours with results (my 2nd endo gave himself a 2 week span to report levels, which is one reason he’s not my current endo). Does your endo wait longer than that to reach out to you?

I really hope they call quickly and can offer solutions to your situation. It is miserable, I’m so sorry after going thru TT to feel you are back to square one (your not but I’m guessing that’s how it feels)

Thanks again for responding. You have really helped me normalize this situation

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in reply to: Back to hyperT? #1180979

Sue – Thank you for your kind word of support. It sounds like you have a lot to deal with. I’m glad you are getting your levels done sooner rather than later. Are you thinking it’s med levels? Did they remove the whole thyroid or just part? The good news is that if you were feeling relatively well at some point after surgery, the odds are in your favor that you will again. And yes these are nasty symptoms and I understand oh so well about the jumping off a bridge desire.

I’m glad the surgery is over for you but am also aware that doesn’t mean the challenges are over. I really hope thing resolve for you quickly and you can get back to your life, with minimal if any symptoms at all. Thanks again for responding. This process can be very long and very lonely and someone simply saying “me too” means a whole lot.

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in reply to: Armour #1180273

What I’m not clear on is why the European Journal of Endocrinology ( http://www.eje-online.org/content/161/6/955.full )appears open to investigating T3 in tandem with T4 as a protocol for a small percentage of patient who do not do well on T4 alone, but both the American Journal Endocrinology and the AEA fundamentally dismiss it.

I am aware of the short half life of synthetic T3 and while on block and replace took it in split doses. There is a form of T3 that is sustained release but requires compounding by a compounding pharmacy. It is my understanding however that this is at risk because of proposed legislation http://www.pharmacist.com/senate-considers-drug-compounding-bill

It has been surmised that one reason that sustained release T3 is not in favor by these organizations is that this formulation is not patentable which in my mind suggests reasons outside of my “best interest” that T3 is not being pursued.

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