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in reply to: how to not obsess about GD and TED – any advice? #1178253

It is hard Carrie. I look different now though I would still count as having “mild” TED. If it stops where it is, I don’t think I’ll ever choose surgery but I already feel a bit of loss about it. So many other more urgent concerns have come up in my life, big ticket stability type things, that I’ve finally let go of obsessing like I used to about my eyes. It helps to read the stories of those who have had severe cases who are handling it well and realize that life does go on. I just had a tiny freaky new change to one of my eyes yesterday and basically I refuse to let this dominate my thoughts – there’s just too much else that matters more. So I guess that’s my advice, find what matters more to you in your life, and redirect your mind there.

Edited….I don’t mean to make it sound just so easy though. For me it was a period of a few months staring at my eyes all the time, freaking out. And even now if I weren’t having major stress in my life I’d probably be more freaked out about that. I think that TED and the psychological effects are by far the hardest part of Graves.

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in reply to: Feeling hyper again, sort of… #1178235

Beta-blockers do cause me to get cold hands and feet, this is a listed side effect actually – the effect isn’t too noticeable for me if the room temp is warm but during the winter it’s very clear. I sure hope you aren’t getting hyper again – did you reduce your meds recently?

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in reply to: Uncaring husband(have to share) #1178116

Karen, I too am so sorry you are going through this. In most browsers now like already mentioned there’s an option to switch to a mode where your history won’t be recorded. You can also go in right now and clear the entire history – if hubby asks (cause he will notice) just say you were worried about tracking cookies allowing spyware to harm your computer or some such thing and then from that point forward use the private/incognito mode for browsing.

It looks like you’ve already gotten some great advice about resources though no doubt it is a hard situation. Do you have any other people in your life who might help other than your mother? For what it’s worth, your husband has no right, none at all, treat you in the way that he is and you have every right to be safe and treated with respect. Feel free to PM me any time.

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in reply to: Kimberly, Ski, Bobbi – can you share your stories for the newbies? #1177943

Good for you Naisly! Do you hold off stopping it because of high antibodies also? Have you ever discussed adding Synthroid to raise your levels? I asked my endo but she rejects it out of hand.

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in reply to: Kimberly, Ski, Bobbi – can you share your stories for the newbies? #1177941

That’s amazing! So averaged out she was taking 0.357mg of methimazole per day. Wow. That’s encouraging to know!

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in reply to: Auto immune trigger – questions #1178034

Momof5, how long since you gave birth to the fifth? My endo said last appointment that pregnancy is often a big trigger because the immune system is suppressed during the pregnancy and bounces up afterward I’ve read about many cases like Adenure’s where pregnancy seemed to do it. For me it was a death of someone important to me after a long period of stress.

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in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177565

Can’t we all just get along?

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in reply to: Kimberly, Ski, Bobbi – can you share your stories for the newbies? #1177939

Thanks Kimberly! I’m wondering how low I can go on my methimazole dose (which is now 2.5mg/day)if my antibodies are still active. My endo seems to think I can go lower as I’m a little low in the FT4 range. Have you ever heard of anyone on a maintenance dose of 1.25?

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in reply to: Kimberly, Ski, Bobbi – can you share your stories for the newbies? #1177937

Kimberly wrote:

I’ve now been on the meds for over 5 years.

Thanks for sharing your story with us! Do you ever get tempted to try going off the meds? What have you looked at in determining to stay on them or whether remission is near?

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in reply to: I Stopped Tapazole #1177773

Lilly I hope being back on the tapazole works out okay. Thanks Kimberly for the web page maybe I can print it out and bring it to my endo so she’ll see what I’m talking about.

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in reply to: I Stopped Tapazole #1177769

Kimberly wrote:

@LillyL – Agree with Sue that getting a set of labs would be a good idea to see where your levels are. You might also talk to your doctor about the antibody testing (TRAb). The latest medical guidance (which you can find in the “Treatment Options” thread in the announcements section of the forum) notes that patients who still have elevated antibody levels are more likely to relapse after withdrawal of anti-thyroid drugs.!

How do you get TRAb testing? I asked my endo and she said they didn’t do it. There isn’t a checkbox for it on the lab form they use though there is one for TSI and Thyroglobulin antibody testing. I went to some of the private lab tests sites and they don’t have it either. Am I asking for it by the wrong name?

And LillyL, yep odds are the tapazole was holding things steady but once you stopped it the antibodies were free to get back to their troublesome business. Sorry though I know that’s got to be disappointing.

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in reply to: Well, here goes! #1173596

I don’t think the TSH is useless if it’s already clearly become operational again. If it is still falsely suppressed by the Graves antibodies yeah we don’t want to pay attention to it. But it’s been helpful for me over the years to see that TSH 2 and over equals real hypo symptoms unless the Graves is very active and falsely suppressing it. I’ve heard some people shoot for 1.0. For me in terms of Free T4 hypo starts to happen at 1.2 and lower – 0.7 is hell.

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in reply to: Well, here goes! #1173592

So sorry AZGravesguy! That sounds rather miserable. I can describe my hypo symptoms if it is of aid. Brain fog, overwhelmed to the point of tears over anything that is wrong, feeling unable to cope, spontaneous joint pain – that’s the key one, constipated, and feeling cold. I’m feeling better these days though not sure where I stand. All the symptoms came on when my TSH went above only 2.0 when it got up to 3.0 it was at its worst I just described. Nightmares for me have tended more to be hyper or betablocker related. I hope you feel better soon!

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in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177521

I believe the reason for this problem is that the majority of endocrinologists will declare a person euthyroid, in the normal range, when they are actually hypothyroid. Brain fog, cognitive deficits, joint pain are hypothyroid symptoms. The TSH range used to be (0.5-5.5) and this range is now believed to have been created including a population of some people who were hypothyroid. In 2002 the National Academy of Clinical Biochemistry determined the actual range for healthy people is (0.4-2.5) and based on this the American Association of Clinical Endocrinologists recommended the range be changed to (0.3-3.0). Not all labs and doctors have accepted these changes and call a person’s thyroid status “normal” when it is not. Also I’ve read little about corresponding changes being made in the FT4 and FT3 ranges so if the FT4 range is (.8-1. and you are at .9….gee maybe you are actually hypo! (Source: TSH Normal Range)

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in reply to: Significant hair loss #1177336

Hi, I’m new here but not new to Graves’. Just wanted to share biotin in either supplement or shampoo/conditioner form has helped me with the hair loss. My endo told me that the hair cycle in 9 months and that I would have to be at optimal levels for the hair loss to stop, but it would take 9 months for the hair that is already angry to finish falling out. I do notice the amount falling out slows down when I use the biotin shampoo/conditioner each time – I’m using Avalon Organics and Jason brands.

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