[Talley]

in reply to: TT/parathyroidectomy scheduled, fear of being Hypo #1182759

I am on my second endo here in CO and think he has done a fairly good job of listening to me since my TT last year.

I was started on Synthroid 100 mcg post-TT by my ENT and didn’t see my endo for six months. When I saw my endo, he upped me to 112 mcg as I was still quite tired and he also wanted to keep me somewhat suppressed due to the cancer dx post-TT.

I changed to Tirosint after reading that it works better in many cases for patients with gastro issues. Again my endo made the change at my request. I also requested to add Cytomel since my T3 numbers were low and he added that.

I am now on 112 Tirosint and 10 mcg Cytomel. I finally feel as close to normal as I think I will – I think the addition of the Cytomel has made a huge difference for me. I am thinking of asking to lower my T4 and increase the T3 depending on my labs next month.

I also see a holistic doctor – but she is an hour away in Boulder and tough to get in to see. She wants to switch me to a compounded T3 since it has a longer half-life. She has also talked about changing other meds, but I am nervous since I am finally feeling better.

I think it generally takes time after a TT to get your levels figured out – what dosage you need and which medications to take.

Yes, you need an endo that will listen – and will have a plan of action (get it in writing) before your TT, so that you are prepared.

[Talley]

in reply to: thyroid cancer diagnosis after TT #1182771

Hi there;

I had my TT in June of 2014 due to Graves, but mainly because I had a mass in my chest that they needed to remove and my endo wanted the thyroid removed at the same time so I could avoid RAI or surgery later.

I was surprised when my surgeon told me that they found cancer in my thyroid (the mass was benign). I feel lucky that my endo recommended the TT when I told him about the surgery to remove the mass.

I would highly recommend going to inspire.com thyCa: thyroid cancer survivors association. I’ve learned a lot about our “good” cancer…there is some helpful information out there to help post dx – if you want to PM me if you have any questions, feel free.

I’m sorry about your daughter’s cancer dx. I hope she is doing well after her TT and finding the right medications post TT.

[Talley]

in reply to: Is there always weight gain after TT? RAI? #1182697

Just to give another perspective…I went into my TT at a good weight – 114 (I’m only 5′ tall). I have always been active – workout daily, eat well, etc.

I gained 15 pounds within the first 8 weeks post TT. I started working out on day 9 post-TT, earlier than recommended, but I was already concerned that I had gained 5 pounds. I was eating very healthy since I was concerned about weight gain.

My endo started me on 100 mcg Synthroid the day after my TT. Since they can’t test your levels for around 8 weeks, by the time they checked my levels I had gained 15 pounds. Unfortunately I didn’t see my endo until 6 months post-TT, I wish I had seen him earlier since he raised my Synthroid as soon as he saw my numbers. My Synthroid was raised to 112, but I still felt bad.

My endo has been great, I asked to change to Tirosint since I have gastro issues and he changed. I asked to add Cytomel to raise my T3 and he did. I believe you saw him in the past and didn’t like him, but I have to say he has been great through this post-TT process with me.

I am still struggling to lose the added weight – I am eating gluten-free now due to my intestinal problems, low/no sugar, low carb, etc. I am now seeing a holistic doctor in Boulder and have a follow-up with her next week – I am curious what she has found in my blood workup, I think my T3 and adrenals are causing the problems with my weight gain (or inability to lose).

Overall, my surgery was great – I loved my ENT and my scar is non-existent. I wish I had a better “plan” for post-TT tx and had started on a higher dosage – although based on my weight, the dose was “good”. My only complaint about the TT is the weight gain.

Be sure your endo will check your T3 and T4 levels after you have your thyroid removed – TSH is not adequate to base your medications on. I am very happy with the added T3 – my body doesn’t seem to like to convert the T4 to T3. I may end up requesting increase in T3 and lower T4 (Tirosint) depending on my next blood results.

Who knows why some people gain and some don’t. I started off at a great weight and now am overweight. I’m glad for the TT since they found cancer, but there are many days where I wish I hadn’t had the surgery…It took almost a year before I felt “normal”…and taking medication every day for the rest of my life is depressing.

[Talley]

in reply to: 11 Weeks Post TT #1181338

Hi Sue;

Glad to see your post…I haven’t checked in here in a long time – I’m now 16 weeks post-TT (tomorrow anyway) and for the past few weeks I’ve noticed I feel “worse”. I am crying a lot – never had this before, I feel “down” – not depressed but just sad, I’m lethargic – not really tired more disinterested and I just don’t feel “good”.

I talked to my endo – he said my labs are “fine” – wasn’t concerned with my low T3 ad lowered T4, only looked at my TSH. I realize that I was used to feeling hyper – I don’t want to be hyper, but I want to feel “normal”…I’m worried that I will never feel normal again…makes me sad – ha, now I’ll cry again.

I’m hoping that once I am stabilized – my levels have changed at every blood draw, that I’ll feel better – or my doctor will finally accept how I feel and make a slight dose change. I really don’t know how to find a doctor that will listen – I think I am very in tune with my body, heck, I’ve lived with it for 47 years…trying to have a doctor that doesn’t have thyroid problems understand is really frustrating!

Best of luck – hope your mood has lifted:)
Talley

[Talley]

in reply to: Safe to take Beta Blocker & Tranq after TT? #1180583

late response, but I asked my doc about taking the bb and sleeping pills and was told it was OK so I am assuming it was also fine for you…

[Talley]

in reply to: TT scheduled for mid-August… #1180552

Hi there;

I’m not sure how long I have had Graves. I can say that I have had to work so hard to keep my weight “in check” over the years – like working out twice a day and doing various diets. I started Jenny Craig last year to lose 15 lb, and lost weight so easily…at the end of two months, I continued to lose weight even without the plan. I thought it was great – until the heart palpitations, tremors and heat intolerance got so bad…had testing done and found out I had Graves.

My numbers were pretty bad. I started on meds but was never very good about taking them and they didn’t seem to work that well with me. Also, I stopped losing weight and actually started to gain – back to struggling to keep my weight down.

I ended up having a TT six weeks ago – they found a small spot of cancer on my thyroid after it was removed so I am very thankful that I had the TT…

Other than the fact that I gained 8 lb after surgery (in five weeks!), I do feel better physically. And, I LOST a pound this week…so, maybe I am adjusting to the “new me” and can work hard to lose the weight I gained post-TT and stay feeling well.

I do have headaches that I never had prior – I think these may be temporary since they are not happening as often as they were a few weeks ago. I don’t think I am on the right level of Synthroid yet – my doc wants to lower it which makes me nervous about weight gain…although, from what I am reading, if I am on the “right” amount of meds based on my labs, this shouldn’t make me gain weight.

I would be concerned with the noduels – although maybe this is because I am still in shock that I had cancer on my thyroid which I don’t think would have been found without the TT.

I think I am going to have to work hard again to keep my weight on track – I’ll do the two workouts a day a few days a week, adding in more weight training will help too. I can’t do much about not having a thyroid, and I think keeping it would have been a mistake for me. I am much better about taking my Synthroid every day than I was with the Tapazole – don’t want to go hypo!

You could certainly talk to your endo about possibly trying meds for 6 months or more to see if it helps, but look into all of your options – don’t let the possible weight gain keep you from a TT…there are many people that had a TT and they don’t go back to the forums to post after because they are doing well…
Talley

[Talley]

in reply to: Just when things seemed okay, vitiligo? #1180403

Amy – my vitiligo started around age 31 and didn’t spread until around 41…it is still mainly under my arms but has spread down closer to my elbows with spots on my wrists, knees and neck. Treatment of the spots while they are new is the best prevention of further spreading – I wish I had known this when I first noticed my vit.

I have no family hx of vitiligo, sporadic autoimmune diseases, but like you, I seem to be the “lucky” one in my family.

Best of luck that your vit does not spread further.
Talley

[Talley]

in reply to: TSH vs FT3 and FT4 #1180475

Carol – I will do some research today looking for an article…I had my TT just 6 weeks ago and my doctor wants to cut my Synthroid dose based on my TSH even though my T4 is in the normal range – and going towards hypo.

I think they also need to listen to the patient – I know what hyper feels and looks like…I no longer have tremors, heart palpatations, night sweats, weight loss, hair loss…I feel “normal” for the first time in a year and yet he wants to reduce my dosage – I’m concerned about going hypo.

I am happy to have had my thyroid removed after hearing they found cancer on it, but I also am sad to now be in a position of needing to “fight” with my endo to listen to me.
Talley

[Talley]

in reply to: Sue’s TT – July 16, 2013 #1180367

I think I felt something similar with the incision – think it was the internal healing going on. My incision was raised on top and bottom. My ENT said it was a plastic surgery “thing” they do – leave it slightly upraised on either side so when it heals it lays flat rather than concave…think I am explaining this right.

At my 4 week appointment, he said could begin to massage the incision – my felt quite “lumpy” at that point. almost two weeks later and it feels much smoother – just one small lump on one side that is getting smaller each day.

As far as the incision goes, relax – unless you start oozing puss or something – it will take awhile for it to feel “better” – mine was sore to the touch for a few weeks.

The anxious feeling – could it just be from being “house-bound” for nine days? or do you think it is similar to the hyper feeling? I am assuming you don’t have lab work for a few more weeks…four weeks post-TT or 6? If it continues or gets worse, maybe call the doctor…

[Talley]

in reply to: Post TT T4 numbers #1180450

Thanks Karen, this is all so confusing! I think I’m starting to understand TSH, T4,T3, then I find out I really have no clue;)

I’ll see where my numbers are in 4 weeks and will make an appt with my Endo – will probably take that long to get in to see him.

I will do more reading too. So, with no thyroid, am I considered hypo not graves now? But, T3 won’t be checked since the Synthroid is only T4…?

I see my PCP in a couple weeks for my annual, I think it’s been a year + since my last bone density test (always been good, but due to a malabsorption disease they check me regularly) so ill schedule that too.

Have to say, getting older stinks…but I suppose it’s better than the alternative. Hoping a year from now I don’t give the thyroid (or lack of one) another thought.

Thanks again for the info and support!
Talley

[Talley]

in reply to: Post TT T4 numbers #1180448

So very annoyed this afternoon. The doctor called and wanted to lower my dose because of my TSH level! Didn’t event room that my T4 is in the normal range now! I told him no. I said it was my understanding that it takes time for the TSH to move and that since the T4 had dropped so quickly, I wasn’t comfortable lowering my dose! Geesh, here I wanted to discuss upping my dose! He agreed to wait for four more weeks and retest.

I need to get back to my Endo. Hopefully he will be better with the dosing. The ENT didn’t want to “release” me back to my Endo until he was OK post-surgery…think I’ll make my Endo appt now for next month!

I’m really nervous about how difficult this is going to be to get me “stable”…I do understand the need to adjust dosing, but I do not feel the least bit hyper – if anything I’m more tired, so decreasing based on my TSH level after 4 weeks seems wrong. I hope my Endo will be better.
Talley

[Talley]

in reply to: First day of Levo…… what should I expect? #1180434

Not anywhere close to an expert…have my own questions to post, but, after 4,weeks – I think your dose is a good place to start. I would rather start a bit high and come down than to dig out of a hypo state. I had headaches every other day for the first three weeks – those are about gone. I had heard some of the vitamins and special shampoos help but if you stop taking or using then you lose the hair growth. My hair stylist recommended the Phyto for thinning hair – 3 months on then three months off, repeat if necessary. I started this when I started the Synthroid and I have not noticed any hair loss – even though my numbers are dropping fast…again, only been 4 weeks, so we’ll see.

I wake up naturally around 5:30-6:00, take my pill with water and then go back to sleep so when I get up an hour later I can have my caffeine! I can’t get up and not have my tea;) we shall see how this works once the kids start back at school in a few weeks…

[Talley]

in reply to: Sue’s TT – July 16, 2013 #1180353

Glad to hear you laid back down and got some rest after getting up early…I think for most of us, when we pushed it that first week we paid for it.

My doc sent me home with the steri strip – seems like two or something else on it, saw him after 7 days, took it off and put one back on and gave me extras to replace it as needed – said he wanted them on until my 4 week post-op visit. At that appointment he said I didn’t need anything but sunscreen…I read a lot about the silicone scar sheets, and with our sun in CO, I really feel better keeping it covered with the sheet – I cut it in half so it’s the size of the steri strip. It worked great at the beach yesterday too!

Oh, funny about the shower – I kept having visions of my neck splitting open in the shower or if I slept funny…similar to my thoughts of a deferent area after I had my breast lift;).

[Talley]

in reply to: Sue’s TT – July 16, 2013 #1180337

Oh, no ice for me, no calcium and no D…

Didn’t touch incision – went back at one week for doc to change steri strip, then four weeks to remove, now using silicone scar sheets and told I can massage incision 3-4xday.

[Talley]

in reply to: Sue’s TT – July 16, 2013 #1180336

Wow! I probably would have walked out after waiting an hour…my TT ended up being an hour earlier than scheduled – which was good since I was a puke of nerves…

Clear your throat and cough! Did they have you using the “breathing thing” in the hospital? You need to cough out any phlegm that could be in your lungs from surgery – I think – I know I had a lot of gunk (for lack of a better word) after surgery and was coughing for days…still seem to be clearing my throat more than usual. I would say all the throwing up you did in the hospital is worse than coughing;)

Try to sleep as much as you can…I think those that do recover quicker. I’m typing on my iPhone – at the beach with the kids (yay), and surprised the surgery seems a distant memory…other than the silicone scar sheet plastered on my neck…

So glad to hear you are home and the surgery, if not pleasant, was a success!

Talley

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