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in reply to: swelling above the eyebrows #1183684

Hi Holly, I’m relieved to know I’m not crazy for linking this with TED. Sorry you have this too – it’s kind of like insult to injury. Did you ever try anything to make the swelling go down? Cucumber slices, tea bags? I too have the extra wrinkles – it’s like the puffed up skin pushes upward to show up the wrinkles – makes me look worried on top of the other eye oddness.

I know it’s silly compared to the really bad stuff, but I’d just like to know which parts of my body are off limits to Graves, you know?

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in reply to: TED (thyroid eye disease) seven years later #1183625

Shirley, your strength and good heart always shines through. I so much wish you could have some relief from this. That everyone could have relief! I often get frustrated with people who don’t take thyroid disease seriously and say oh you just take a radioactive pill and you are done. It’s a lot more than that. Thanks for sharing you story and courage with us.

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in reply to: swelling above the eyebrows #1183682

Thanks Kimberly! So swelling above the eyebrows? This is some weird stuff. I’ve had swelling below the eyebrows for almost two years now maybe it just wants to expand. There were all those chocolate Easter bunnies I ate…hmmm.

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in reply to: graves disease and concentration problems despite medication #1183673

Yes. I consider the effect on my mind/emotions the highest ongoing cost of Graves’ for me. I’ve experienced the whole range upper and lower of the thyroid levels, so I know it’s just not a matter of being wrongly medicated. I wish this issue had higher prominence. I do think it hits some people harder than others for reasons they don’t understand just like TED.

Jill I’m sorry your daughter got this so young and I would encourage you to investigate all possibilities. For some people being medicated too high or low (with methi. or synthroid) really is the problem. Sometimes it’s something else – low iron or vitamin d. And if it can’t be found then all you can do is adapt and use what you’ve got to the best of your ability….that’s about it for me.

Kimberly, the link looks interesting I hope to check it out later!

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in reply to: Methimazole trigger Graves eye? #1183419

Hi Mforsberg21, I too am someone that has taken on educating myself to the nth degree about this so I can have influence in my treatment. I think it is fair to say that a shockingly large number of doctors do not understand Graves well enough and are not giving the right treatment to their patients. That is not to say that there aren’t good doctors out there, but it is very much a caveat emptor situation.

First the disclaimers, I’m not a doctor – I’m a self educated patient, but here’s what I feel I’ve learned:

The key problem in treating Graves’ is that the TSH is not a reliable indicator of what the dosage should be – of ATD or replacement both. Doctors finally seem to have a consensus that the TSH for the first couple of months after onset will be falsely suppressed. But after that most make dosing decisions based off of it as if it were a normally working TSH of someone without Graves’. If they used only FT4 and FT3 a lot of misery would be avoided. But many don’t – This is where the trouble comes in. If there is a process in Graves’ which makes the TSH unreliable for those first couple of months why do we assume that that process completely stops after that time?

I wish you well and hope that you can find your way through this medical maze. I’d say too remember it is not always the worst case scenario – some people do find good doctors and get good outcomes and I hope that you are one of them.

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in reply to: ** If you have ever gone into remission, please come in ** #1182648

I was on methimazole for over two years and had gotten down to 0.625mg/day and my FT4 and FT3 were still too low for me to feel okay, so endo declared remission and stopped it. I could not get her to order a new TSI or Trab test to get her to verify my antibodies were actually in remission though so honestly it may never have been real remission. It lasted about three months and then major life stressors drove the TSH all the way back down but fortunately I caught it before the thyroid levels got too high. Still felt crazy though. I had to move so now I have a new endo and I’m hoping to form a better relationship with this one.

My two cents, most “remissions” aren’t remission unless the antibodies are normal. Graves’ has blocking as well as stimulating antibodies, so you can still be sick but have the right balance to make the thyroid levels look right. I’ve read it often takes about four years on ATD’s for a more lasting remission so I’m not too bummed….well okay a little.

My situation now is that my life circumstances don’t support surgery so I’ve got to make that methimazole work period…..so I will

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in reply to: Old (ongoing) question: WHEN to take T4 #1183352

Hi again Sue, good to hear the morning time is working and your husband is great backup. Yep Sensitive Hothouse Flowers here!

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in reply to: Old (ongoing) question: WHEN to take T4 #1183343

Hi Sue, how’ve ya been? I had a brief dalliance with remission and am back on the methimazole. And so it goes I had an idea for you – maybe you are at the wrong part in your sleep cycle when the alarm goes off, maybe very deeply asleep. What if you try setting it at a different time during the night?

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in reply to: Methimazole trigger Graves eye? #1183394

Hi MForsberg21, sorry you are having to join us but welcome! You might be interested in the study (don’t have the link handy) that shows worsening or onset of TED after RAI is linked to they thyroid levels being allowed to go too low before hormone replacement is started. This is conjecture but it seems to me that a similar dynamic could happen if someone is hyper and their levels drop rapidly from a high dose of methimazole and they stay too low. I would encourage you to make sure that your doctor is not determining your dose of methimazole based on TSH as it tends to be suppressed especially early in treatment for Graves’ patients. Free T4 and Free T3 are the recommended tests to dose by. As always please think about a second opinion…..this stuff is hard enough and we need all the options possible. Good luck to you!

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in reply to: Feeling Frustrated #1183374

Hi Charity, I hope you are still around just realized your post is from 12/10. I really feel for you. I’ve been diagnosed with various forms of depression almost my whole life and now I know much of that time I was too low on thyroid hormone. My thyroid only got taken seriously once I officially became hyperthyroid. In a way it was a blessing because I really believed up until then that I just had all this depression and general wimpiness as some sort of character trait.

I am a little over two years on the path of managing my Graves with methimazole – so I’ve still got my thyroid but have experienced (and still am) all the ups and downs. The biggest thing I’ve learned is this all of my values TSH, FT4 and FT3 can be “in range” but there is only a very narrow part of that range where I actually feel well. I have to advocate and convince any doctor I see of this – sometimes this goes well….and sometimes not. I keep meticulous records of every lab and over time I’ve been able to learn what to shoot for and have evidence to present to the doc. Perhaps you can start a file to find your wellness ranges too – you can always get your old records and look back on how you felt at different lab values.

I still think it is profoundly unfair that any of us should need to advocate for ourselves to this degree just to get decent thyroid treatment in this country. I hope one day that there will be a serious movement to bring about change.

Also I really hope you don’t lose your job – if your employer is open to it have them look at a few of the websites for people with hypothyroidism and see how debilitating it can be. Maybe your employer will be compassionate. Hypothyroidism because that’s where many are stuck once they get on replacement a lot of the time and even on anti-thyroid drug therapy the doctors tend to keep you on the low side.

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in reply to: Feeling fairly hopeless #1183284

Hi Linda, I’m trying to respond to your homophone post but I keep getting rerouted to a web page that won’t let me reply! So I reply here. Yes, this happens to me but in a different form. Often when I am writing I’ll write a homophone word. Like I might have written right instead of write. That is a mistake I just didn’t tend to make before GD. Two years plus in and I still do it some and have to proofread my stuff more carefully than I used to. I’ll have to pay attention to see if this is happening for me in listening to others!

I’m sorry you are having a rough time too. This disease is a rough gig – partly because it seems so hard for others to understand its impact and maybe even for us to explain it. Take care and hugs.

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in reply to: Ratio between TSH and Free T4 levels? #1183192

Hey Sue! How’ve ya been? I would be tempted to ask him whether he finds this TSH/FT4 ratio applies in the same way to Graves and non-Graves patients. TSH does some funky things with us Gravesters. The most I’ve heard about a ratio is that TSH moves logarithmically in relation to FT4 and FT3. I’d say let your symptoms be your guide and if you begin to feel hypo insist on a raise or complete tests. Me, I’m feeling pretty off lately because of other life events but I am finally off the methimazole – I don’t call it remission because I know it’s a tricky business but I have cautious hope.

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in reply to: Puzzling Symptoms? #1183117

Hi Conniepye, please have your doctors test your FT4 and FT3 along with your TSH to determine your levo. dosage. TSH can be affected by antibodies even after RAI and cannot be used as the sole indicator of your treatment. I have much sympathies for all you are going through. It is absolutely crazy that thyroid patients are required to advocate for themselves so strongly just to get the right care so they feel okay. Good luck tomorrow!

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in reply to: Importance of TSH #1183102

Check it out Subclinical thyroid problems and heart disease

even TSH’s higher within the normal range are linked with risk of serious heart issues. TSH of 17 is crazy high, perhaps your FT3 is very low? I had subclinical hypothyroidism for many years before Graves and became accustomed to a “normal” of low functioning but I really had no idea what was going on given it was so gradual. You might be amazed how good you feel if you get more of the right replacement.

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in reply to: Frustrated & looking for answers #1183096

Hi Ecl39, sorry you are having trouble! Did you already have an ultrasound and radioactive uptake test to rule out hot nodules? Hot nodules can require more methimazole and be more unpredictable. This potentially came up for me as I was initially diagnosed was Graves and a hot nodule both. Ultimately the docs decided the nodule wasn’t hot after all in part because low doses of methimazole worked. You could also ask you doctor about block and replace therapy (high dose of methimazole combined with thyroid replacement meds) – that would force some stabilization too. Good luck!

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