[Gabe]

in reply to: normal to have depression after TT? #1180124

Hi. I’m 4 weeks out and feeling pretty darn good. But do have some swings and inconsistencies in mood and energy. Some of which may be because I’m also menopausal. If you haven’t already, get your levels checked! My personal opinion is that the medical community wants most patients to wait 4-6 weeks post TT to get labs done. I had blood drawn exactly 3 weeks out and I was already hypO (TSH 24.9). So my Levothyroxine was doubled. Insist on labs based on how you are feeling, not what your doctor typically does.

Also, your body is going thru major changes…recovering from a surgery and recovering from what for some is a long time being hyper, AND adjusting to the absence of medications you no longer have to take (ATDs and beta blockers..both of which have their own side effects).

There is nothing quick fix about his damn disease!

Hope it gets better for you,,,,

Karen

[Gabe]

in reply to: Brief check-in #1180128

Hi Amy. Good to hear from you and sorry to hear you’ve been down in the dumps. Maybe some fresh air camping will help. If not, get those levels checked girl!! I’m 4 weeks out and feeling OK except for TED stuff and some inconsistencies in energy level. Hope you feel better soon!

Karen

[Gabe]

in reply to: Eyes #1180112

Hi Suzanne. Very timely questions. Read the exchange between Shirley and I on my “Gabe’s TT Journal” (page 6). Bottom line: TT will not cause TED nor prevent it. TED is caused by the Graves antibodies attacking the eyes. Some get it, some don’t. Shirley’s occurred 50 years after her TT (holy cow). TT is one of the three treatment options for the GD as it relates to the hyperactive thyroid. TED, I believe, is technically a separate but related disease secondary to GD because of the antibodies. Hope this helps!

Karen

[Gabe]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179641

@Shirley. You are a wealth of information! Thanks so much. All the things you mentioned we’re discussed with me except for the possibility of recurrence (#3). I know the prism sticker will be blurry tomorrow and I’m sure I won’t like it. The cost of the prisms isn’t all that bad since I needed new glasses and my prescription changed anyway. My next appt is August 7th so that should give me enough time for the brain to get used to the prisms and to see if its working. I’ve read enough on here to know that in all likelihood this will not be an easy or one-time fix…so I’m crossing each bridge as they come. And trying to stay positive and patient!

@Sue. I’ve had eye involvement (swelling, dry eyes, blurry, mild pain, mild proptosis) since the beginning, however the double vision has gotten worse these last few days. I don’t think it has anything to do with the TT. My antibodies are very high so I think it’s just the TED running its course. Just when I start getting the thyroid crap under control, this kicks in…just isn’t fair…

My sister had/has GD with RAI 5 years ago and never had eye issues…

Thanks!

Karen

[Gabe]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179638

TED and Endo update:

Called yesterday for an “emergency” ophthalmologist appt because the double vision is affecting many aspects of life. I have a great ophthalmologist! The lower muscles on my right eye have pulled the eyeball down and pushed it out…lovely. Mild proptosis but bad diplopia. They are going to start by grinding prisms into my eyeglasses and tomorrow I’m picking up the temporary prism sticker for my existing glasses….should look cute. Go back in 5 weeks and if this doesn’t work we’ll discuss strabismus surgery…yippee… The hyper thyroid mess of symptoms were bad but gotta say the double vision is very hard to live (and work) with.

Endo visit went OK. He upped my Levothyroxine from 50 mcgs to 100 mcgs since my TSH was 24.9 just three weeks post TT. However I’m not feeling bad…slight weight gain and some low energy days so glad we caught this early. Questioned why he isn’t checking my T3 (only labs he ran were T4,Free and TSH). Didn’t give a good answer since he believes in dosing off the TSH level. Asked him how would he know I was converting T3 properly if not checked. Gobbledygook answer that I can’t remember. Asked him about combo treatment using DTE (Armour). Thinks its too unregulated and not standardized enough and might be quackery (his actual word). But has used it for ‘subjective’ symptoms treatment. I may be looking for new Endo.

Next labs in 6 weeks. Still very pleased with TT choice!

Cheers,,,

Karen

[Gabe]

in reply to: question – post TT & hot flashes, nausea #1180066

Hi Talley. Good to hear that you are on the mend! My hot flashes have gotten a little worse since TT but I am menopausal so I’m not sure of the exact cause. I don’t sweat with them but it does feel like my core is on fire and I feel myself getting a little anxious until they pass. Funny because today I started timing them. Seems like I have about one each hour. Annoying!

I started my synthroid at 5O mcgs and take mine at the same times and the same way you described. I am not experiencing any nausea now. But I do remember feeling a little nausea the first week after TT…I thought it was more related to the surgery than the Levothyroxine.

Hope this helps!

Karen

[Gabe]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179634

Very helpful Shirley! Is there a medical test or something that tells the doctor you are in hot or cold phase? How do you know? Once you have double vision, can it correct itself?

Yes, I have TED…moderate proptosis diagnosed on 5/21 but the double vision has gotten worse since then. I do remember the ophthalmologist telling me to deal with the thyroid first and then we’ll deal with the TED.

The work continues….damn this GD!!

Karen

[Gabe]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179631

Thanks Shirley. Did your double vision eventually go away? Or is it controlled via your eyeglass prescription? Or some other way to control it? is this something that can lead to more sugery? anxiety rising! I have a great ophthalmologist but I will definitely seek a neuro-ophthalmologist (didn’t know there was such a thing).

Thanks! Karen

[Gabe]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179629

Sue,,, forgot to mention something else. I believe the ‘standard’ practice is to schedule a post op visit with the Endo at the 6 week mark. Based on how quickly I’ve heard others swing hypo and my sisters experience with going hypo so quickly after her RAI, I chose to make my appt at the 3-4 week time. Glad I did. Would rather adjust meds at the beginning of the hypo cycle then later. Just a thought.

Karen

[Gabe]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179628

Hi Sue, I have a very generous sick leave plan and could probably take off a lot more. I’m also blessed with a work environment that allows remote working and a lot of flexibility. I plan to work from home 1 or 2 days next week and for weeks to come while I’m still adjusting. It’s more my guilt feeling about not being at work then the benefits. I’m determined not to sacrifice my health however.

I probably felt good enough at the 2 week mark to start the RTW, but the surgeon was nice enough to write me off for another week.

So we’ll see what tomorrow brings and what my Endo says on Tuesday. I too am curious to meet my new ‘normal’ self! Hopefully she arrives soon!

Karen

[Gabe]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179626

Hi all,, just a quick update. Three weeks post TT and beginning to feel slightly hyPO. Feeling the fatigue, eating more yet very little weight gain, muscle weakness, and general lethargy. Some bursts of energy but nothing sustained.

Return to the Endo on 6/25…am anxious to see my labs. Fully anticipate he will up my Levothyroxine from 50 mcgs to something higher. Plan to ask his opinion on Armour.

For the past 3 days my eyes have been at their worse for double vision. Not sure what that’s all about. See what Endo says and plan to make appt with Ophthalmologist. Very annoying since I love to read and most of my work is on a computer.

I return to work tomorrow and am a little nervous. Especially if my eyes are not cooperating and my energy level is so low. I’m hoping this is a temporary set back that will be corrected with an increase on my Levo or a change to another type of hormone.

Scar is healing nicely. Most people don’t even notice it. Itches slightly and can feel that some of the stitches still need to dissolve.

Thanks for all the support and feedback. Forever grateful!

Karen

[Gabe]

in reply to: My 4 year old son just diagnosed with Grave’s Disease #1179982

Kim. Welcome. So sorry to hear about Jordan. This disease is stressful in adults so I’m sure your little guy and you are anxious. We’re all patients here so we know what it’s like to have all the symptoms that Jordan has. You’ve come to the right place to get educated, vent, and help your son.

Start a journal, read the Treatment Options paper in the Announcements Section, and Kimberly offered some great suggestions. There are parents of very young children on this forum that I’m sure would love to connect with you and help you.

I wish the best for you and your little guy!

Karen

[Gabe]

in reply to: TT complete #1180013

What fantastic news! Congrats! They found cancer in my thyroid when it was removed also…much to my surprise. It was very minute and early so it’s essentially gone with the thyroid. Bye bye thyroid,,,bye bye cancer. Another confirmation why TT can be a very good form of treatment.

Rest and don’t feel guilty!

Karen

[Gabe]

in reply to: TT complete #1180009

Good news! Glad to hear from you. You will feel like superwoman while you still have the effects of the anesthesia and the pain meds. Don’t overdue it…you will experience a crash in the next day or so…so the more you rest now, the easier the crash will be. Your body has been thru a lot. Getting in your own bed with some pampering is the best medicine. Take care and I hope you get good pathology results.

As is standard procedure they will draw your blood a few times while in hospital to make sure you don’t have any calcium issues….make sure they tell you the results before you leave.

Best wishes,

Karen

[Gabe]

in reply to: theory for one sided TED #1179977

I have it worse on one side than the other but it’s not the side I sleep on. I questioned my ophthalmologist as to whether sleeping on one side vs the other helped or aggravated the condition and he didn’t seem to think it did either of these. Who knows? What does anyone really know about this crazy disease?! I continue to be amazed how much the medical community truly doesnt know about this…..

[Author]

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