The THYROID Thread

[macraven]

angwill, the endo started me back on 50,000 ie weekly.

 

[Christine]

I just realized I am on 4000 iu vitamin D3 daily. Thought I was only on 2000 for some reason. McRaven 5000 vitamin D per month is not going to keep those D levels up. I would think you should be on that daily? If I miss my vitamin D for a couple days I start cramping up right away.

I have a question for anyone with low D levels, do you get super itchy skin when your levels are low?

Singing mom, Good luck with the bloodwork and mammo. I am glad I got mine done earlier in the year.

I do have super itchy shins and also my back. But I had not attributed it to low Vitamin D. I just thought I had dry skin. I can't say that it has really gotten better with the Vitamin D supplementation. Maybe a little. But it also gets better in the summer anyway due to the humidity.

 

[branv]

Hi everyone! Hoping you can share your wisdom once again. We finally have a date for my thyroidectomy, and I was wondering if any of you can impart some tips. Things that either helped you a lot during recovery, things you'd have done differently or things you wish you'd known about. I've been surprised to not find much regarding this online.

One particular question I have is if anyone found that doing gentle neck stretches helped to reduce the muscle pain and stiffness everyone reports having.

The good news is that I gave myself permission to find a new ENT. My original one did a lot to help me, so I felt awful. But there were just some red flags I couldn't keep ignoring (y'know, if someone planning to cut into your throat isn't motivation to reevaluate your relationship, I don't know what is). The best part is that since I have to go into the hospital alone while DH watches our 1 yo, switching ENT means I can now be at the hospital 10 minutes from our house rather than the one 45 miles away in dense traffic. HUGE relief.

I was told it's an overnight minimum at the hospital, that I will have drains, and to not lift anything over 10 pounds for 10 days (which means my son too, sniff sniff). Other than some verbiage about wound care, to eat normally, yadda yadda, it's all very dry and limited medical advice. I could definitely use some advice!

 

[luvmarypoppins]

Singing Mom - hope your mammo and ultrasound turned out well

ang - I used to have really itchy skin. That was before dr.waste my time couldnt diagnose me with anything correct. I told him, I have super itchy skin and it feels like someone s poking and stabbing me like a vodoo doll. He said, oh maybe its just allergies. Um, no it was a total lack of vitamin d and severe anemia. He later found out after he finally did my blood work. Since my thyroidectomy the endo has had me on the 50,000 iu weekly and I have no itchiness except for winter time and that is only sometimes.

branv - I am glad you finally got a date for your surgery. I was not the typical patient so my advice wouldnt probably be all that good. I had 2 drains, one came out before I left the hospital. Nothing would help the pain I had so I cant comment on the neck exercises. I unfortunately will have pain the rest of my life due to surgeon #3 surgery to save my life.

Maybe a neck pillow would help. I know others said they didnt have issues, but I had to eat alot of soft food for a while, bread, salad and french fries were def. out for me.

If you need to take pain meds, take them. I just wanted to sleep alot. My voice was hoarse for weeks but I had vocal chord bruising too.

Wishing you all the best. I am glad you found a new ent that you like and feel comfortable with. Hang in there

 

[angwill]

Hi everyone! Hoping you can share your wisdom once again. We finally have a date for my thyroidectomy, and I was wondering if any of you can impart some tips. Things that either helped you a lot during recovery, things you'd have done differently or things you wish you'd known about. I've been surprised to not find much regarding this online.

One particular question I have is if anyone found that doing gentle neck stretches helped to reduce the muscle pain and stiffness everyone reports having.

The good news is that I gave myself permission to find a new ENT. My original one did a lot to help me, so I felt awful. But there were just some red flags I couldn't keep ignoring (y'know, if someone planning to cut into your throat isn't motivation to reevaluate your relationship, I don't know what is). The best part is that since I have to go into the hospital alone while DH watches our 1 yo, switching ENT means I can now be at the hospital 10 minutes from our house rather than the one 45 miles away in dense traffic. HUGE relief.

I was told it's an overnight minimum at the hospital, that I will have drains, and to not lift anything over 10 pounds for 10 days (which means my son too, sniff sniff). Other than some verbiage about wound care, to eat normally, yadda yadda, it's all very dry and limited medical advice. I could definitely use some advice!

Branv. I don't remember if you have thyroid cancer or goiter or what? My thyroidectomy was done because of cancer. The surgery for me was a breeze it was the TSH suppression and going into hypohell then the RAI treatment that were the worst for me.

What I found was that I read all these things about the pain, possibly losing my voice or my parathyroids that would cause me to be on medication for low calcium for life etc etc. What actually happened is that I must have been the most fortunate thyroid patient ever. I only lost one parathyroid so I can take OTC calcium and vitamin D instead. From what I read because of my hoshimoto's ripping apart my thyroid it would be a mess and more likely to lose those parathyroids. I had absolutely 0 pain from day one a not even a slightly scrathy voice or slightly sore throat. I didn't bother taking my pain meds after the first day. No pain or sorness in my neck at all. My surgeon looked at me like I had three heads when he saw me after surgery and asked my pain level and I said 0. That said I have been told by doctors in the past that I have a very high pain tollerance. I didn't think so with some of the back pain I have had over the years. So prepare for the possibilities but you may just be surprised. Just realized you said you will have a drainage tube. Are they taking out lymph nodes as well? I didn't have a drainage tube but only had my thyroid removed no lymph nodes so maybe that makes a difference? It is an overnight in the hospital while they watch your calcium levels to make sure you don't go too low which can cause painful cramping and other issues.

Sometimes firing a doctor can feel liberating. I fired the doctor who found my cancer right away and found a new doctor I loved. Got my ENT after surgery and will fire him as soon as I am regulated and will try to find a GP that feels comfortable treating me. There are no other ENT's anywhere near me but I feel like I know more than him anyway. He charges $169 a visit and lately it is me who tells him what meds I want tweeked and what labs to do. It is frustrating to pay someone to do nothing and then have to wait around all day on a Wednesday for lab results and if you miss his call you rotate to the next Wednesday's calling list, even when you call him back right after his call. This is his new method and I am not pleased I won't even go into how many phone calls it takes to get meds called in or lab orders faxed. His office staff is as good as he is at their jobs. lol I hope he is much better as a diabetes and weight loss doctor which most of his patients see him for.

I am sorry about your baby and not being able to lift him. Also that you have to be alone. Honestly, I would not have minded being alone when coming off those meds after surgery. Oh you might want to bring with a note pad and pen or pencil for the nurses after and ask for some ice chips if they don't give you any.

Do you have any other specific questions? Sorry I don't know anything about neck exercises. Maybe others here have better advice.

Oh and you tube has some really good video diaries of people who have had thyroidectomy's who record the before and after telling how they feel and what helps them.

Good luck. Ang

 

[angwill]

Singing Mom - hope your mammo and ultrasound turned out well

ang - I used to have really itchy skin. That was before dr.waste my time couldnt diagnose me with anything correct. I told him, I have super itchy skin and it feels like someone s poking and stabbing me like a vodoo doll. He said, oh maybe its just allergies. Um, no it was a total lack of vitamin d and severe anemia. He later found out after he finally did my blood work. Since my thyroidectomy the endo has had me on the 50,000 iu weekly and I have no itchiness except for winter time and that is only sometimes.

branv - I am glad you finally got a date for your surgery. I was not the typical patient so my advice wouldnt probably be all that good. I had 2 drains, one came out before I left the hospital. Nothing would help the pain I had so I cant comment on the neck exercises. I unfortunately will have pain the rest of my life due to surgeon #3 surgery to save my life.

Maybe a neck pillow would help. I know others said they didnt have issues, but I had to eat alot of soft food for a while, bread, salad and french fries were def. out for me.

If you need to take pain meds, take them. I just wanted to sleep alot. My voice was hoarse for weeks but I had vocal chord bruising too.

Wishing you all the best. I am glad you found a new ent that you like and feel comfortable with. Hang in there

Thanks LMP. I just notice that as my Vitamin D increased my intense itching got better but still never went away completely. I also notice if I forget to take my Vitamin D the cramping and intense itching come back. It was so bad I scratched my skin to bleeding and would use my big toe nail to scratch my calf and foot to the point I found out I pulled it off and am toe nailess still. My endo tells me everything is not thyroid related to tell my GP.

 

[SingingMom]

Lmp - thanks! Mammo & ultrasound status quo but I must admit, this time my mammo was total agony! I am petite but well endowed so I am used to being uncomfortable but yoza, this time it was very painful. I do like this facility though, since radiologist reads everything immediately.

Bravn - I had my surgery 22 years ago. Stayed in hospital two nights. Drains removed before I went home. Two things I can advise or just mention:

1. My sister, an RN who used to run a recovery room, told me when I awoke from the surgery they would ask if I was in pain. She told me to say yes - since they would give me something in recovery and watch me more closely than once I was in my regular room. They gave me morphine and I was fine the rest of my stay!

2. Be prepared for multiple blood tests to check calcium levels etc. seemed like every time I sort of got comfortable, someone else came to draw blood. I bruise easily and both arms were black & blue from wrist to past elbow. That sort of caught me off guard. Also having to wear a beck collar for a day was odd feeling.

The surgery & post op were ok. Afterwards having to go hypo to have the body scan was much worse. Luckily I don't believe they do it gaff way anymore!

Good luck and be well!

 

[Christine]

My surgery was about 19 years ago so my memory is vague.

My surgeon told me that for the first 24 hours, you will like you have a very bad sore throat. And that it rapidly goes away. He was absolutely correct. I did get demerol in my hospital room and that didn't go well for me. I would just stick with ibuprofen or something if I had to do it all over again.

I had one night overnight. I was told not to drive for a week (as was my friend who just had the surgery). They don't want you to have to rapidly move your neck. In fact, they'd prefer you not be spending a lot of time in the car. It would be very bad if you got into a accident.

I did lose a parathyroid and had no issues with calcium levels. My friend did NOT lose a parathyroid and had calcium issues for about 6 months. You just never know. She's fine now.

 

[branv]

Thank you so much everyone. I definitely hope I'm one of the ones who recover easily. I know my csection was surprisingly easy, and like thyroid surgery, that is another you hear everything from "not too bad" to "it took weeks to recover and a lot of pain." Your suggestions are being stored in my brain (though these days, my brain is so sieve like, I'm grateful I can also revisit here and reread ).

My surgery is due to Hashimotos with multinodular blabbity blah. I have three nodules on the right about 2 cm ea, one of which came back suspicious/indeterminate with hurthle cells, and three small nodules on the isthmus/left side. I was hypo for a bit then asymptomatic for years, but then the nodules started growing again and pregnancy sent it into a tailspin. My labs 2 months ago showed my TSH of 10 was down to 3.2, but my endo wanted me under 2.9 at the least. She upped my synthroid, and my latest test last week showed me at 6.6!! I mean, what the... My meds gets upped and my TSH gets worse?! Yep, this is one roller coaster I'd like off of, please.

One of the reasons I fired my ENT is that she insists on giving you your biopsy results face to face. Which sounds great, except, even if your biopsy results come in a week later, you usually have to wait another 3 weeks to get an appt. I've been through two biopsies with her now, and I couldn't do it again. It was cruel and my anxiety almost killed me. I asked my new ENT about that, and he rather explosively said, "No way would I do that to a patient!! That's just mean!"

 

[SingingMom]

I understand your frustration with your original dr. But I have one better - my endo all along thought my nodule was due to treatment from Graves Disease but did the biopsy anyway.
Called me AT WORK and said "I'm really surprised, but it's cancer." @@

 

[macraven]

that's awful !

 

[angwill]

Here is an article about why we should have our vitamin D levels checked along with the calcium especially after surgery. http://www.henryford.com/body.cfm?id=46335&action=detail&ref=2133

branv that is cruel. Reminds me of my first doctor I fired and I wish I could have done a charge back for her costs. lol Glad you found a much better ENT and that you have choices where you live.

From what I have read with Hashimoto's some people have the ups and downs in TSH numbers with that disease. I didn't have that but many do.

Let us know when you go in for surgery and how your doing afterward. If you don't mind prayers I will send them your way.

 

[luvmarypoppins]

I never commented on the previous posts.

I too got a call that I had cancer. It wasnt even from the biopsy, it was from a pet scan and it wasnt even the ent surgeon, because originally I went to a thoracic surgeon because my ct scan showed a mass in my chest. It was really in my thyroid but so huge I think it looked like it was in my chest on the ct scan.

Yup, I never saw that surgeon again but I would probably be wanting to hear it face to face but no way would I want to wait for 3 weeks like you had to branv. That is torture and cruelty for sure.

Well tomm. my dh is going for blood tests for his thyroid. The work physical dr. said his appears enlarged. So he went to our reg. md, yup dr. waste my time who couldnt even figure out I had cancer. He never calls you back with test results, sigh. Good luck dh. I told him not to go there and to go to the univ. hosp. instead but he wouldnt listen to me.

I am going to have to book the bone scan soon I am behind.

Also going to start planning our dec. disney trip. So far it looks like we will stay at the Swan. The disney hotels are just too expensive even with dh ff miles. The Swan is a better deal for the miles. I like MVMCP and the Candlelight Processional.

My 2 ds continue to look for jobs. Ds 1 nothing yet, but his basketball coaching will start soon for the highs school and he goes to his unpaid internship 3 days a week but he is really not learning what he wanted to.

Ds3 is applying for nursing jobs like crazy but nothing yet. He is being a recess aid and gym teacher at his old grade school. Its a private school so they are not caught up in all the rules so its good for now. He also is now an officially licensed nurse in in Florida!!! So he has been looking at jobs for there too. He loves it warm and hot like me and loves the ocean too.

Check in when you can. Hope everyone is doing well.

 

[Holly Quinlan]

Hello everyone! sorry for the long post! I've been putting off getting checked out but think I'm finally going to schedule an app with my PCP.
My main symptom is excessive hair loss I don't even know how to describe how bad it is I just chopped it all off the other day. Also I'm only 26 and I'm willing to bet that I'll be fully gray with in the next few years. I've been getting hot more than usual and the last few times I've randomly checked my temp I've had a low grade fever(normal for me was around 97.7) I've always been a laid back person and never worried about anything but now I feel nervous/restless all the time causing my heart to feel like its about to pound out of my chest. dry skin around all my joints and random pains in my legs/arms. Does this sound like a thyroid issue?

What symptoms did you have that caused you to get checked out and how long did you have them before you were checked?

 

[angwill]

I never commented on the previous posts.

I too got a call that I had cancer. It wasnt even from the biopsy, it was from a pet scan and it wasnt even the ent surgeon, because originally I went to a thoracic surgeon because my ct scan showed a mass in my chest. It was really in my thyroid but so huge I think it looked like it was in my chest on the ct scan.

Yup, I never saw that surgeon again but I would probably be wanting to hear it face to face but no way would I want to wait for 3 weeks like you had to branv. That is torture and cruelty for sure.

Well tomm. my dh is going for blood tests for his thyroid. The work physical dr. said his appears enlarged. So he went to our reg. md, yup dr. waste my time who couldnt even figure out I had cancer. He never calls you back with test results, sigh. Good luck dh. I told him not to go there and to go to the univ. hosp. instead but he wouldnt listen to me.

I am going to have to book the bone scan soon I am behind.

Also going to start planning our dec. disney trip. So far it looks like we will stay at the Swan. The disney hotels are just too expensive even with dh ff miles. The Swan is a better deal for the miles. I like MVMCP and the Candlelight Processional.

My 2 ds continue to look for jobs. Ds 1 nothing yet, but his basketball coaching will start soon for the highs school and he goes to his unpaid internship 3 days a week but he is really not learning what he wanted to.

Ds3 is applying for nursing jobs like crazy but nothing yet. He is being a recess aid and gym teacher at his old grade school. Its a private school so they are not caught up in all the rules so its good for now. He also is now an officially licensed nurse in in Florida!!! So he has been looking at jobs for there too. He loves it warm and hot like me and loves the ocean too.

Check in when you can. Hope everyone is doing well.

I don't so much mind that I found out about cancer in a phone call since it saves a trip and the charges for an appointment it was that the doctor should have been the one to do it since they are the ones with the knowledge and the ones who make the decisions. They should never wait like they did to Branv that is neglect.

Wow on how huge yours was.

How did your DH visit go for his thyroid? Good I hope.

Good luck with the bonescan too.

I do hope your boys find their dream jobs soon.

 

[angwill]

Hello everyone! sorry for the long post! I've been putting off getting checked out but think I'm finally going to schedule an app with my PCP.
My main symptom is excessive hair loss I don't even know how to describe how bad it is I just chopped it all off the other day. Also I'm only 26 and I'm willing to bet that I'll be fully gray with in the next few years. I've been getting hot more than usual and the last few times I've randomly checked my temp I've had a low grade fever(normal for me was around 97.7) I've always been a laid back person and never worried about anything but now I feel nervous/restless all the time causing my heart to feel like its about to pound out of my chest. dry skin around all my joints and random pains in my legs/arms. Does this sound like a thyroid issue?

What symptoms did you have that caused you to get checked out and how long did you have them before you were checked?

Your message is short. Are you used to Twitter? lol Your symptoms do sound like thyroid and a lot of times it is beauticians when cutting a persons hair that notice when someone has thyroid issues. I lose hair even being medicated if I am too far to one end or the other of suggested levels for TSH. I just added Cytomel a T3 med to my levothyroxine and am finally growing my hair back. I have a whole lot of about inch long hair sticking up. lol I too always ran a low grade fever when on the hypo end of the numbers but on the hyper my body temp regulates more and my body can handle the change in temps otherwise I am freezing all the time and running a low grade fever. Anxiety and heart pounding can happen too. Dry skin is typical so keep it hydrated every day so it doesn't get too bad. The joint pain could also be your vitamin D going low along with your thyroid so ask them to check calcium and vitamin D that are regulated by the thyroid. Good luck and let us know how it goes.

 

[Holly Quinlan]

Your message is short. Are you used to Twitter? lol Your symptoms do sound like thyroid and a lot of times it is beauticians when cutting a persons hair that notice when someone has thyroid issues. I lose hair even being medicated if I am too far to one end or the other of suggested levels for TSH. I just added Cytomel a T3 med to my levothyroxine and am finally growing my hair back. I have a whole lot of about inch long hair sticking up. lol I too always ran a low grade fever when on the hypo end of the numbers but on the hyper my body temp regulates more and my body can handle the change in temps otherwise I am freezing all the time and running a low grade fever. Anxiety and heart pounding can happen too. Dry skin is typical so keep it hydrated every day so it doesn't get too bad. The joint pain could also be your vitamin D going low along with your thyroid so ask them to check calcium and vitamin D that are regulated by the thyroid. Good luck and let us know how it goes.

Thank you! My post looked much longer wren I was typing it out. I have an appointment with my PCP tomorrow afternoon so hopefully soon I can get some answers.

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[macraven]

After 17 days in Orlando, I fly back home tonight.

I should have a higher Vit D level with all the sun I have taken it.
Never missed a dose of my ergo while here.

Hope all of you are fine

 

[angwill]

I got some bad news the other day. I started hemorrhaging so went to gyne and they did a uterine biopsy and I found out I now have endometrial aden carcinoma. I am going to have to research if that is a cancer that can happen after thyroid cancer. Does anyone here recall hearing that? I remember breast was one for sure.

Thanks,
Ang

 

[SingingMom]

I got some bad news the other day. I started hemorrhaging so went to gyne and they did a uterine biopsy and I found out I now have endometrial aden carcinoma. I am going to have to research if that is a cancer that can happen after thyroid cancer. Does anyone here recall hearing that? I remember breast was one for sure. Thanks, Ang

So sorry to hear that, Ang. Hopefully it was caught early and you will be fine. Prayers for you!

"SingingMom" ....Sent from my iPad using DISBoards