[catstuart7]

in reply to: Apology #1176554

Don’t worry Amy, and I hope you feel better and ok to come back soon!

[catstuart7]

in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176396

Bella1 wrote:

Kimberly wrote:

In an attempt to find some answers about TSI effects and remission, I came across an article yesterday at Thyroid.org in the New Research section which has a new study (backed up by 2 previous studies) that shows that Graves’ TSI also affects thyroid-like tissue in the brain. I wasn’t able to find the link to the study when I went back, but they were able to show damage and diminished blood flow to the right frontal lobe (rational thought and decision-making), which may be the cause of the emotional and cognitive side effects of TSI. The worst part was that they believed the damage done to the brain tissue may not be reversible even when or if TSI is reduced. So we may have more to worry about than just eye and heart damage from sustained high levels of TSI.

Kimberly, would you know if TSI reduction is more likely with drug, RAI or TT treatment? Because that seems to be the imperative in Graves treatment.

Thanks.

Hi Bella, I’d be very interested in that study if you find it again. What Kimberly said is the official word I’ve read too – it’s either the normalizing of the thyroid levels and/or the ATD meds themselves that reduce the antibodies but they don’t know yet. If you use the search function you might find the thread where someone posted a study on that – think it was within the last three months.

[catstuart7]

in reply to: Have GED – could not tolerate methimazole now having problems taking PTU #1176489

Shasha, sorry you are going through all this – big hugs your way! Based on my own experience so far and reading, muscle and joint pain can be a hypo symptom. The normal range for my labs for FT4 is (0.8-1. and I am now at .9 same as you and this is my lowest drop yet and I feel like crap, slightly nauseous, pains and am quite sure this is due to being too low. My eye symptoms while milder than yours are also the worst they’ve been so far. Many people believe that being hypo can aggravate TED. One option is to lower the dosage further, the other is to add replacement hormone on top of the mmi/ptu. In my case I may have to switch endos to get this resolved as my endo only doses by TSH and likes where mine is. I wish you luck and improvement!

[catstuart7]

in reply to: Help, desperately please if anyone can.. #1176444

Lots of your post spoke to me too Vanillasky. I do struggle with how much to talk about Graves. Especially when it obviously affects my moods or memory, sometimes I do tell people I have a thyroid problem. I don’t go into detail beyond that. I do worry what I’ll do if the eye problem gets worse – I have one eye slightly larger than the other and I don’t think people notice it consciously unless I point it out to them. I wear my glasses more now to try to hide it sometimes. Fun, fun, fun.

Rae5, I’m glad you liked the link – that page really sums it up for me. Liked the link from the husband of Graves lady too. I say take it slow, let your former partner introduce the materials to his family when the time is right. I’m sure once they read in black and white a description of the change they saw in you they will find forgiveness and understanding.

[catstuart7]

in reply to: PTU effectiveness vs Methimazole #1176431

On PTU I had a much smoother experience – meaning consistency in how I felt throughout the day – taking it about 3 times a day. I sleep 9-10 hours a night so perfect 8 hour dosing was impossible. But I just picked the midpoint of my waking time and set my cell phone to beep at me at the time every day to remind me. Wasn’t a hardship at all. I’ve been taking my MMI twice a day since it has a longer half-life than PTU, but just today I’ve decided to split it three way just for the hell of it to see what happens. It won’t really change the labs, but maybe I’ll stop pigging out on junk food right before I’m due for the next dose and feeling a little hyper!

[catstuart7]

in reply to: Can’t get into new endo til mid-March–now what??! #1176414

It’s tricky, I entered the low FT4 range many months ago but my hypo symptoms have slowly accumulated since then and did not come on right away. Anyway sounds like your endo wants you to come up some anyway reducing the dose so he’s doing better than mine!

[catstuart7]

in reply to: Help, desperately please if anyone can.. #1176441

Here’s a good page Information for Family and Friends

[catstuart7]

in reply to: Well, here goes! #1173557

I’m so glad for you AZGravesGuy!

[catstuart7]

in reply to: Can’t get into new endo til mid-March–now what??! #1176412

amosmcd wrote:

My endo called me at 8:30am this morning with my thyroid lab results:

TSH: 1.4
FT3: 2.4
FT4: 0.69

Hi Amy, do you have the ranges for these results? According to the lab ranges for mine, from three different labs, your FT4 is below the bottom cut off for normal and you would be hypo right now. Anxiety and palpitations are common hypothyroidism symptoms. I am so glad your endo has reduced your PTU dose for you.

[catstuart7]

in reply to: PTU effectiveness vs Methimazole #1176423

My endo said when switching me from PTU back to MMI that the general rule is 10:1 so 50mg PTU is 5mg MMI. I’ve found so far that the methimazole is slightly more powerful than the PTU but it is very very similar at that ratio. I noticed you mentioned eye puffiness in another thread – for me that kicks up once my FT4 gets toward the bottom end of the range. I’m not sure where that fits in with TED.

[catstuart7]

in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176383

Those ranges are pretty similar to those for my lab so yeah pretty darn hyper! I hope you can get in soon and see where you are at today. I went from hyper to down near hypo in the span of only one month on PTU – change can happen fast. Many docs in the beginning do labs at least every six weeks.

[catstuart7]

in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176382

Modifying since what I was responding to is deleted. Wishing you the best Bella, hang in there!

[catstuart7]

in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176377

Hi Bella, welcome and much sympathies for you having to join our club. I’m similar to you in that I have had mostly hypo symptoms over the last decade – have one lab test only that proves it from years ago and am overweight. Graves hit me officially last March. I can’t tell you how frustrating it is to have Graves and not to at least have gotten supermodel thin!!! I think it threw off docs from looking for it the first time I came in with an elevated heart rate.

I’ve also had an odd mix of hyper and hypo symptoms related to dose changes. Things get confusing because your symptoms can reflect the change that is occurring in your levels as well as just which they are objectively at. But yes stopping your meds was not good – you will need to be on them a couple years at least unless you get remission, or RAI/surgery in which case you’ll be on replacement meds. So it is a good thing you are back on them but you may need to go through the full three week process before relief kicks in – three weeks seems to be the magic time for relief and rashes with methimazole. If I were you I would not wait till the 22nd, that is 12 long days away – better to demand labs now including Free T4 and Free T3 to know where you are at. It’s very hard to be successfully demanding when you feel crazy and bad, but we can only do our best

[catstuart7]

in reply to: Could This Be True? #1176352

Agreeing with Rae5, it is the opposite. Most endos rush their patients to a final thyroid solution based on what I’ve read. It is rare to have one dedicated to helping you achieve remission. Ultimately it’s about you and which path your feel best following – each path meds, rai, or tt all have significant pros and cons to them.

[catstuart7]

in reply to: Creatinine levels elevated…? Thyroxine or kidney failure #1176247

Hyperm, so sorry to hear things are bad right now. I don’t know much about kidneys connected with Graves but I would guess it is rare though. Maybe another doctor’s opinion might be helpful about the kidney connection and how your replacement hormone is being managed. I’ve read that there are some people who do have a hard time with t4 only replacement and need t3 additionally to feel okay – have you ever explored that angle? Wishing you well.

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