[catstuart7]

in reply to: weird throat sensation #1175340

Guys I am freaking out….I keep feeling like my throat is being pressed in. Feels like a finger is poking me in the lower throat toward my windpipe. I keep checking though and I can breathe and swallow okay so I guess it’s not a crisis. If anyone here has experienced anything like this please let me know. I guess I should be encouraged (?) that no one here has experienced anything similar. I checked on another board with mostly hypothyroid people and this symptom was mentioned so maybe I’m hypo now? I just want to be WELL, will I ever be friggin WELL??????

Sorry for the rant.

[catstuart7]

in reply to: antibody.for.graves.test.came.back.positive. :( #1175351

Hugs to you Stacy. I know it’s hard when you get confirmation. In the beginning my case was unclear and I was hoping so much it wasn’t too. Then my endo saw my TSI result and said well that settles it and it felt like a door shutting. Still you are in good company here – lots of people with experience on this board to help you.

[catstuart7]

in reply to: weird throat sensation #1175339

Thanks Kimberly! When I had my first ultrasound they said my thyroid wasn’t enlarged so I hope it’s not up to anything since then.

[catstuart7]

in reply to: Well, here goes! #1173546

Vanillasky, like your post about the mental effects – I can’t stand them! Even if I’m slightly hyper my mind goes too fast, my thoughts get disjointed and disorganized, and the emotions are too intense. My first endo told me that her Graves patients drive her crazy…but backed off quickly and made it into a joke but I suspect she was serious.

AZGravesguy, still rooting for you! I hope your bloodwork is helpful. I’ve found that the deep long unrestful sleep is a hypothyroid symptom for me. When I’m hyper I have very light sleep, wake up easily.

[catstuart7]

in reply to: Saw Endo this morning–off Methimazole! #1175221

Amy, this is very interesting to me for my own situation too. Were you also starting a beta-blocker on the first day you started the methimazole or was it the only new thing? I’m interested because I’m now trying methimazole again for the second time right now and feel realllly sedated – trying to sort out if I’m going hypo or maybe reacting as you did.

[catstuart7]

in reply to: Saw Endo this morning–off Methimazole! #1175219

Kimberly, glad you remembered because I can’t find my link to the study anymore. It seems to me too with them adding a small amount of thyroxine that it would be possible to stay on the methimazole longer increasing chance of remission. I read lots of individual accounts on the net of this strategy working, but I wish there was an official study I could bring to my endo!

Amosmcd, are you sure that you felt sedated because of the methimazole OR because you were on too high a dose of methimazole and were hypothyroid? The question of what is a side effect of all of these things (methimazole, PTU, synthroid) seems to get blurred by whether the person is also hypo or hyper because of wrong dosage.

[catstuart7]

in reply to: Saw Endo this morning–off Methimazole! #1175216

One option for you guys to consider is “add back” or “block and replace” therapies where you take methimazole and thyroxine both. The methimazole keeps the thyroid in line and the small amount of thyroxine keeps you from hypo. There is a Japanese study about this leading many people to remission which I brought to my first endo. She dismissed it saying that it had not been replicated but I wasn’t at a point of needing very low anti-thyroid drugs anyway then so I didn’t push it. Still if I were in your position I’d be tempted to try it!

[catstuart7]

in reply to: double vision #1175198

I got one a few years ago at Walgreen’s for when I had a corneal abrasion. It had a black side and a blue one on the reverse.

[catstuart7]

in reply to: 18 year old college student #1175129

rebecca0510 wrote:

So here I am, about 3 months in and I am still not myself, but better. My heart has gone down to a completely normal pace and I am considering getting RAI over winter break because everything else is going too slowly according to my doctor.

Welcome Rebecca! Sorry you have to join our club though. I am older, but at a point in my life where Graves is majorly derailing my future. I have sympathies for where you are at. I would encourage you to educate yourself as much as possible on all the options. I am working toward remission on antithyroid drugs, but if that doesn’t work out am planning on surgery. Based on what I’ve read people seem to get stabilized faster on the replacement hormone after surgery than RAI. But everything has its pros and cons, there is no choice for Graves that has zero significant negatives. It’s a very individual decision which mix of pros and cons works for you.

[catstuart7]

in reply to: Joint/Muscle Pain – How common? #1175012

WWW, I’ve read that it is very common practice for an endo to halve the original dosage when the thyroid levels come into range. So it’s not an entirely crazy thing your endo did going from 20 to 10. That said it clearly didn’t work for you! My endo reduced my initial dosage by a quarter when my levels came into range and I immediately began to become somewhat hyper. After a few back and forths on dosage it has become clear my initial dosage actually IS my maintenance dose. I think it’s very individual though and our docs need to be open to discovering what works for us rather than following any formula. For me the joint pain is definitely linked to rising thyroid hormone.

My theory on the docs is that managing Graves is at the limit of their knowledge. It is hard to treat and varies hugely based on the individual. Even which systems are hit hardest (beyond the thyroid) vary by individual. I find the psychological and memory effects most disturbing. I’ve gotten into quite a few internet battles since this started, it is easier to feel aggressive and act on it with Graves. I’ve also learned that it lowers the pain threshold, emotional and physical. But I read of others who don’t have this problem at all and have other issues. Some have eye issues some don’t. It is scary to have a condition you just can’t self treat, must have a doctor for and then they turn out to have feet of clay. My current tactic is to educate myself as much as possible, so I don’t allow my docs to do anything I know would be harmful to me. But beyond that I try to work with them and establish a good relationship. It is a challenge.

I wish you luck and hope the pain issues stop soon!

[catstuart7]

in reply to: Normal T3/T4, Low TSH? #1174931

Hi Gatorgirly and all, I wanted to update you all on what happened when I shared those studies I linked to with my endo…..zilch. She wouldn’t even look at them and insisted I was completely wrong. I found it quite depressing.

[catstuart7]

in reply to: Joint/Muscle Pain – How common? #1174997

For me joint pain was a symptom of the hyper state building. My very first Graves symptoms were eye symptoms – kind of inflamed irritated conjunctiva made my eyes look red all the time almost a year before diagnosis. After six months of that I had a couple of weeks of terrible pain in my joints – it felt like I’d imagine glass inside them would feel, in my finger joints and cerebral vertebrae, pain so bad it made my gasp and freeze. One time I was putting a barrette in my hair and the pain sudden hit a joint in my hand manipulating the barette – I literally yelled it was so sudden and sharp. I went to the doctor with this and my unusually fast pulse (was 100) and my doc said oh it’s probably nothing. I said what about my pulse though? And she said oh some people are just faster than others. The joint pain did thank God get better. But the pulse kept getting faster and other weird things began to happen and six months later I had the shakes, diarrhea, heart racing and well you guys know the rest.

I feel the same fury and frustration – I should not have to go to medical school or spend endless hours on the internet educating myself to make sure I get adequate care. It sucks. I hope those of you suffering pain find much relief soon!

[catstuart7]

in reply to: OD in the “hot” Phase #1175077

Hugs to you Hoganshelly! It sounds like you are in a really intense difficult position. I have read about cases where RAI fails or is incomplete and the person resumes anti-thyroid drugs to get things under control. Just floating an idea, but what if your endo put you on methimazole to bring your thyroid levels down which would also reduce your bp and then you’d be safe for your OD? You can always deal with your thyroid down the line. Are you on a beta-blocker for your blood pressure now? I’m not a doc, I just read a lot…good luck!

[catstuart7]

in reply to: Normal T3/T4, Low TSH? #1174929

Hi Gatorgirly, I’m so glad your surgery was successful! I hope those nerves finish waking up soon – that you have sensation there sounds like a good sign. I’m not sure if this compares but one time at the dentist I got the right lower side anesthetized for some work, and my tongue stayed half numb for weeks! He said the numbing shot must have hit the nerve but that it would heal and it did after a while. Maybe it will work that way for you?

Hi Shirley, I hope the study will be useful with your endo – I’m planning to talk to my endo soon about all this too. Not sure how she’ll react. Here’s one more related to the low TSH issue if it will be helpful:

http://www.thyroidmanager.org/2007/02/01/long-term-tsh-suppression-in-graves-hyperthyroidism/

[catstuart7]

in reply to: Normal T3/T4, Low TSH? #1174925

Hi Gatorgirly, how are you doing post surgery??? Hope it went well!

About interpreting the study here’s how I’m seeing it (you or your doc may read it differently…) This line is the money quote:

“We offer an alternative explanation, involving a direct effect of TRAb on TSH secretion by the pituitary.”

The TRab are the thyroid receptor antibodies of Graves. These are with us for life but do wax and wane in their quantity. They propose that these are acting directly on TSH receptors in the pituitary itself. This causes

“TSH secretion is influenced through a negative ultra-short-loop feedback mechanism within the pituitary.”

the short-loop feedback causing the pituitary to release a suppressed amount of TSH in the face of normal thyroid levels. Whether those thyroid levels are normal because of taking antithyroid drugs or whether they are normal because your thyroid was ablated/removed should not matter in this scenario. But true in all the studies I’ve found showing antibody suppression of TSH, they are not on people post RAI or post TT, but I’ve not exhaustively looked at everything but it is my goal one day! Maybe run it by your doc and see what he/she thinks?

Edited to add: the upshot of all this is that if 88mcg leaves you feeling good and your FT3 and FT4 where it should be then the TSH alone should not be a reason to change it.

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