# When will post op medicine begin?



## voto23

Hi everyone!

I have a PT set for Oct 21st. Possibly a TT if cancer or Hashi's is found during surgery.

I started a post in the General Discussion forum about a month ago that more explains what I'm dealing with. Basically I have a multinodular goiter and have had two fna's both inconclusive. I deal with bouts of acute thyroiditis (not sure if Hashi's). I have presence of antibodies TPO, TSI, TRAB/TBII, not high levels. I have never been on thyroid medicine except for a few week period to try to suppress symptoms and I couldn't tolerate them.

I know I'm going to have a lot of questions in the coming few weeks leading up to my surgery and am so grateful to have this website! 

I have a few questions about post op medication:

I know that if I have a TT I will absolutely need thyroid replacement but was wondering with a PT? Do most ppl still need medicine? My doctor acted like I might not need any with a PT and I was just wondering how accurate that is?

If I DO need thyroid replacement, who will start me on that? My ENT surgeon or my endo?

And last question is about timing. Again, if I do need medicine, how soon after surgery do I start on it? I have been researching on this board and find that some ppl start immediately after surgery and some that wait weeks. Is that because of the possibility of cancer and are awaiting pathology? If so, I guess I would fall into the last group??

Sorry for so many questions! I have tried to get answers out of the nurses but I don't really get anywhere. And I feel that if I can get some answers to my questions ahead of time, it will help me to not be as nervous in these weeks leading up to surgery. 

Thanks everyone!


----------



## joplin1975

Everyone is very very different but it seems to me that most people with PTs need at least a little medication. It also seems to me that most people's doctors tell them they won't. 

As do for who would start you on meds, I would assume if you have a PT, they'd wait, see who your labs look and go from there. My surgeon was happy to adjust my meds but I think most surgeons prefer to have endos or general practitioners handle the meds.

If you have a TT, well, again, it depends. A lot of doctors are starting cancer patients on meds right away and them using thyrogen if RAI is needed. Buuuuuut, a lot of doctors don't believe on using thyrogen for initial RAI treatment. In that case, you'd wait.

The best thing to do would be to ask your surgeon. I'm willing to bet almost every post op patient has had a slightly different experience.


----------



## voto23

Thank you, joplin1975, for your help.  So, yeah, I guess a lot of questions dealing medication will be up in the air until surgery is done. Just knowing THAT does help me, and I

can put that aside for now and know it will be dealt with as it comes. I will talk with my surgeon and see if he can give me some idea. Thanks again.


----------



## Lovlkn

voto23,

With all the antibodies you have - I am surprised your surgeon won't just remove the entire gland?

How do you feel physically? Since you have not yet been on medications I can only imagine your antibodies are doing a balancing act, which may or may not continue.

If it were me, I would inquire about a total thyroidectomy.


----------



## joplin1975

And, yes, I agre. Get that TT if you can.


----------



## jenny v

I'll third the TT. With all of those antibodies floating around it could be difficult to stabilize on medication after surgery if you've got half of a thyroid left. I would definitely ask about that.


----------



## joplin1975

Oh, and also, I was on 25 mcgs of Synthroid (as reaaaaaaaaaaaaaaally low dose) for a week before surgery and I would have sworn in a court of law that I almost died. I would sweat through my shirts by lunch, could only sleep about two to three hours, was jittery, anxious, and was told by my husband that it was like living with a meth addict. I blame the TSI. If you have TSI, I don't believe that it is realistic that you will be able to tolerate even low doses of thyroid meds. So, um, just one more time: ZOMG get the total!


----------



## voto23

Lovlkn, thank you for bringing up about the TT instead of PT, and thank you everyone else for chiming in.  THAT has been another question I've been dealing (stressing) with!!

I've been praying and trying to stay hopeful that the surgeon will do the right thing during surgery (do a TT if needed) but I guess I shouldn't leave that up to chance..? He said if he found any

cancer then he would take the whole thing and also if he found any inflammation then he would take the whole thing. But how often does that really happen?? And would he really see

"inflammation"? I'm concerned that maybe I would be having a "few good days" and things would be calmed down and he would miss it. Ugh!!!! I'm so confused.

joplin1975, thank you for the comment about the meds and TSI. That, again, has been a HUGE stress for me (I could cry thinking about it...sorry)

I am so stressed that after the surgery I won't be able to tolerate meds like last time. And, yes, the meth addict comment was right on! I was so panicky, jittery, and nervous on the medicine. It was absolutely horrible! And I became mentally panicky and couldn't be away from my husband. I know, weird. I have never been like that in my life, so I knew I had to stop the medicine. I was told by two endos that the reason i had those symptoms was "because I didn't need to be on the medicine". :-/

So, it looks like I need to have those antibodies GONE!!!!!! And that would require a TT. I will speak with my surgeon about this. Has anyone requested a TT and been told no??....

(Thank you all for the advice you are giving me! You have no idea how much you are helping me (and have helped so many others) through this process!)


----------



## voto23

And I would love to hear from others who had issues tolerating thyroid replacement meds before surgery but have had no problems with them after a TT.

Sorry, but this is a huge fear/stress of mine because I know after surgery I will HAVE to be on medicine....and I never want to feel, again, like how I did on the medicine in the past. ;-/


----------



## joplin1975

Yes, that was me.  I'm FINE on meds now. No, not fine. Better than fine...I'm great!

When I had the TT, I was 36. I'm 39 and I swear I feel better than I did at 29. I'm so, so grateful my case required a TT.

Hope that helps!


----------



## voto23

Yes, joplin1975, that soooooo helps to hear that!  Thank you.

Btw, I'm 45. And if I could feel even 39 again I'd be happy!!........but I'll take 29, too, haha.


----------



## voto23

Hi everyone, just wanted to update. Looks like it will be a TT for me. I messaged my surgeon and explained all my reasons for wanting a TT instead of PT and asked for his

opinion. His nurse (who is just wonderful) called to tell me that he read back through all my history and does believe that it is warranted to go for the TT. She even said that if he

didn't truly believe it was warranted he would not approve it and that he was more "conservative". I was SO glad to hear that. I didn't want it to be me asking for (and getting)

something that was unnecessary.

Well....a little more than a week to go. Getting a little nervous but I am actually more excited and looking forward to hopefully feeling sooooooooo much better!!!!


----------



## Octavia

voto23 said:


> I messaged my surgeon and explained all my reasons for wanting a TT instead of PT and asked for his opinion.


Okay, I have to confess...when I first read this (quickly), I thought you "massaged" your surgeon...and I thought "well, hey, whatever it takes to butter him up and get that TT!"

But really, good for you--this is great news!


----------



## voto23

Octavia!....that just gave me a good laugh! Thank you, I needed it!


----------



## voto23

Hi everyone!

Well......tomorrow is the big day! Surgery is at 7:30am (arrive at 5:30am yikes!  Actually, I'm glad to be going early so I don't have to stress all day. Right now I am feeling

nervous but honestly I am happy, too. Happy to be on the road to feeling better!...happy to be getting my life back! Mostly my nervousness is about the "unknown" (surgery,

post-op, how will I feel afterwards etc) but reading all the stories and advice on this board has helped SO much with that. I thank all of you for sharing so much. 

My endo has already sent in a prescription of Armour for me of 90mg. She didn't say when to start it (I'm assuming they will tell me in the hospital) and then she wants to see me 6 weeks.

Well......I will update you all after surgery! Thanks, again, for everything! 

~Kathy


----------



## joplin1975

Wishing you all the best


----------



## jenny v

Good luck!


----------



## voto23

Well.....I made it! This will be a quick.

Still tired and dealing with the pain. Home yesterday. Dealing with some calcium issues too. Hospital and dr's and my hubby have been great. 

Will update more later.


----------



## joplin1975

Glad you are back home! Take care of yourself.


----------



## voto23

Hi everyone, 

An update on me.

I am doing better and better each day, but let me tell ya, this recovery has been more intense than I thought it would be! I have not been one of those people

that "went out to lunch after leaving hospital" or "walked around my neighborhood on day 2"!!!haha Usually I'm a bounce-right-back kinda girl but this has kicked my butt!! I

am now day 5 post op and starting to feel a little more normal. Swallowing is easier and less painful. Breathing easier. Calcium issues seem to have lessened. My voice is still

very hoarse and soft but I know that will take time, too. It was seriously day 3 before I was able to walk unassisted to the bathroom and not all hunched over like a 90 year old

lady!!! haha. So it goes to show you, everyone is different. I wasn't going to say how rough it's been for me, (and sugar coat it a little), but then I thought.... No, this is how it's

been for me and I sure appreciated the truth when searching this board for advice and stories. So my advice....have a back up plan....plan for extra days off and extra

help in case it's needed!! If you don't need it, all the better. 

One great thing is that I have a wonderful hubby (and family) who are taking great care of me so I've been able to rest in bed and take is very easy.  I'm doing what I can,

going slowly, a little more each day. We are blessed with amazingly warm, fall weather here so I've been able to sit outside the last few days and enjoy that. That has definitely

lifted my spirits. 

My endo started me on 90mg Armour (1.5 gr) the day after surgery and so far so good. I see her in 6 weeks for labs and adjustments if needed. I was most fearful about

starting the meds because in the past I was unable to tolerate any thyroid meds without horrible side effects (see above in this thread). But I haven't felt anything

negative.....just calmness.  (a special thank you to joplin1975 for giving me the confidence boost that that's how it would be once the thyroid and antibodies were

OUT!!!....you were right). 

In two days I go back to the surgeon for post follow up. I'm very interested to hear the pathology report and find out what the heck was so wrong with my thyroid. My incision is

much longer than I or the doctor anticipated. I had talked to his nurse ahead of time who said it is usually 2-3 inches.....my is at least 4 inches and it is down in the very hollow

of my neck. It looks good though and is healing quite well. I do have some bruising on my chest where the drain was. When my surgeon came in to discharge me, his first

words were "It was a little bit more than you thought it would be isn't it?"....and told me that we would discuss everything at my follow up. I'm glad he didn't go into anything that

day because I was very hazy and probably wouldn't remember it. Anyway, that is probably why I'm also having a little rougher and longer recovery than some have.

I will update in a couple days and let everyone know about my pathology report. Fingers crossed I have the all clear and NO cancer!!!! )

~Kathy


----------



## joplin1975

Yup, everyone is so, so different. Glad you are doing well and glad the transition to meds hasn't been troublesome.


----------



## jade

I'm glad to hear your surgery's over with and you're doing well =)


----------



## Andros

In spite of your slow bouncing back; you sound wonderful. You sound happy!

And.......................we are all glad for that!

Many hugs,


----------



## voto23

Whelp.......drum roll please...... I had Hashimotos AND cancer! How sucky! :sick0012: I'm just glad that suckers GONE! I'm still trying

to absorb all this.

My surgeon said no other treatment is necessary and to see my endo, like scheduled, in 5 weeks. Does this sound right? I'm not that

informed about the whole cancer aspect as we didn't know I had it going into my TT but I know I've read about RAI and the such.

The pathology report says:

DIAGNOSIS

- Papillary Thryroid Carcinoma, 6mm

margins negative (but close)

-Lymphocytic Thyroiditis

-One parathyroid gland and benign perithyroidal lymph node

(There is a more detailed part of the pathology report I could give if needed.)


----------



## voto23

additional info from my follow up appt....

Also, my surgeon said my thyroid was very large and had actually grown around my left vocal cord, so he had some difficulty with that. He said he knew the vocal cord

would be okay because after he removed my thyroid, he tested the vocal cord and it tested fine.

He looked at my vocal cords today and sure enough the left one wasn't moving as much. He said it might take a couple more weeks for my voice to come back and

I see him in a month to look at them again. He took the stitches out and said my incision looked good and I could start using Mederma anytime.


----------



## joplin1975

Well, sounds like your thyroid was a hot mess, too!

A 6mm cancerous tumor is consider a "micro carcinoma" and in most cases, no additional treatment is needed. You will need annual (some folks do it every six months) blood draws that include thyroglobulin and TgAB, which are tumor markers. Your doctor might suggest annual ultrasounds as well...but generally, the monitoring should be minimally invasive.

How are you feeling?


----------



## voto23

Yes, joplin1975, my thyroid was a hot mess! I'm so glad I listened to my gut and got that thing OUT!

How am I feeling?

...physically I'm doing better each day.  I actually did a little housework yesterday and today. Tired quickly, so I'm still resting a lot. Swallowing is

much easier and less painful. As I said above, my voice is still not great so that is aggravating and I feel like I need to clear my throat a lot. But I know that will

all get better with time so I'm trying to keep my mind off it.

...mood-wise I had been feeling so great after surgery for the first 4 days or so (an after surgery high maybe?!) then around day 5 through day 6, post op, I had some

bad times with mood and irritability (my poor hubby, I know he thought I was crazy haha.) But I woke up this morning as if that never happened. I had read on this

forum that maybe there could be a mini crash around that time after TT and I'm hoping that was it and nothing more haha! But I know things could be up and down for

awhile and I need to just be prepared to deal with it.

....as far as the Hashimotos and Cancer diagnosis I feel extremely happy and extreemly sad. I'm happy that my thyroid is out and now I can hopefully start

feeling better and getting on with my life. (I have felt so bad for so long that I don't know what normal feels like!) But I'm also sad because I was told for years there was

nothing wrong with my thyroid.... Your nodules are fine... Your nodules aren't cancerous....You don't have Hashimotos.....Your TSH is normal, there is nothing wrong with

your thyroid. .....that's just sad.

.......but on to bigger and better things, right?!!


----------



## joplin1975

Yup, now you know why all of us bug other posters to death regarding those pesky nodules. 

And, yes, the ups and downs of life post-TT are normal. And it will even out. Just tell your husband to steer clear!


----------



## voto23

Yes, absolutely now I know!!! My cancer was found in a nodule they never biopsied because it was under the 1cm mark. Wow, how crazy!

Thought I would post my full pathology report just for info for other people.

Remember, I was never diagnosed with Hashimotos or cancer before my TT. My tsh was always normal (although very low free t3 and free t4).

My TT was for multinodular goiter and thyroiditis flare-ups.

If you feel somethings not right......it just might not be! Listen to your gut and be your own advocate!

Pathology Diagnosis:

-Papillary Thyroid Carcinoma, 6mm

- margins negative, but close

-Lymphocytic Thyroiditis

-One parathyroid gland and benign perithyroidal lymph node

Microscopic Description:

The biopsy from the left neck shows benign thyroid tissue with no parathyroid gland. Sections of the total thyroidectomy show a small 6mm papillary carcinoma

surrounded by a thick fibrous capsule. This has mainly papillary architecture and pale nuclei with fine chromatin, nuclear grooves and scattered nuclear

pseudoinclusions. It focally penetrates the capsule into the surrounding parenchyma, but is confined to the gland with negative (but close) margins.

The remaining parenchyma shows lymphocytic thyroiditis with foci of Hurthle cell change and vague nodularity. In the periglandular soft tissues, there is

a single parathyroid gland and very small benigh lymph node.


----------



## Andros

That's why some of us are so dedicated. It's all about saving lives here. And if not that, at least improving the quality of life for others.

Bless your heart................................!!!!


----------



## voto23

Thank you, Andros. 

Yes, now I understand why all of you are so dedicated. As I was trying to absorb everything I learned yesterday from my pathology report, that realization hit me like

a ton of bricks! NOW I get why those ppl (all of you dedicated ones ) spend so much time helping this board saying....get this test...get that test...biopsy those nodules..

..etc etc...

.....I could have fallen through the cracks. It's making me emotional as I'm writing this because, honest to God, the only reason I did a lot of that was from the advice

and guidance and confidence I got from THIS BOARD!!.....sadly not from many doctors.

I know you all know this!!! but I'm saying it again.....What you dedicated ones do, the time you spend....saves lives! God bless all of you.


----------



## Andros

May the Good Lord bless you 1000 times over! You have made my heart smile!


----------



## jenny v

Welcome to the thyroid-less club! There will probably be a few bumps in the road as you recover (nothing is ever easy with thryoids!), but you got that nasty thing out and now you can move on.


----------



## voto23

Thanks jenny v! I am happy to join the club  .....and I'm looking forward to the months/years ahead to becoming even happier and happier with my TT decision!!


----------



## voto23

Well........I could just cry. Actually I already have.  I went for my 6 wk post op appt with endo today and, let's just say, I'll be doctor shopping. It was horrible.

First off an update on me. I still don't have much of a voice. At my one week check up with surgeon, my left vocal cord was completely paralyzed. I saw him last week (5

weeks post op) and it was moving a tiny bit. He is still very confident it will come back. I really like him and he has been a great surgeon. I see him again in 3 months.

I only had to take calcium for about 2 weeks. Everything seems to be fine with my parathyroid glands.

As far as how I've been feeling....I felt really good thru week 4 post op. Did a lot of holiday shopping, decorating...even did some painting around my house. I was thinking "if I can feel like this for the rest of my life then I'll be good to go!!". Then things have started to go downhill for me. Through week 5 and 6 after surgery it's been a slow decline into severe fatigue, cold, depressed etc.... basically how I felt before surgery. The symptoms were a little easier to handle knowing I'd be having my blood work and appt soon and hopefully an increase in medicine if needed......but that's when I started to realize my endo wasn't going to be a match for me.

First off I asked her if I could have labs done a week early since I had been feeling so bad......."no"

Secondly, when I went (drug myself) to get the labs drawn, I realized she had only put in for TSH........I almost lost it.

My 6 week lab. TSH - .32 (0.4-4.5)

And that brings me to today's visit. She didn't ask me how my surgery was, how my recovery was, about my voice (that I don't have!), nothing. Actually the first thing out of her mouth was that I was hyper and she'd be reducing my medicine. Here I thought I would be getting an increase!! and she's talking about reducing???!!! She said she will only be testing TSH because t3 and t4 only show what you're taking by mouth and not what's in your body. I told her I was feeling great through week 4 but now so fatigued. She said that is hyper also (I understand that but she didn't ask me about any other symptoms). She went on about how there is a lag time for the tsh, which I knew. I asked, well this tsh test shows what was going on with my body 6 weeks ago?....right after my surgery? I had just started my medicine!! And I felt great!!! She didn't comment. She did say that she was fine leaving my medicine where it was. I said YES. It wasn't the increase I had hoped for but she seemed to not be reducing it either....so I took it and ran. (since surgery I am on 90mg Armour)

Then I asked about the cancer aspect. I said I knew it was small but asked if I would be having blood work, ultrasounds in the future? What is her plan to monitor that? She said, No, nothing. It was an "incidental find". She asked if there was anything else?, as we were walking to the door. I just said No. Then she said, Yeah about 50% of people, at death, are shown to have some thyroid cancer, so we don't really do anything about it.

I just left.

Really sorry this was soooo long. I just needed to vent. So now, of course, I'm freaking out and thinking "maybe I AM hyper?"...blah blah blah. But I know it's

useless to wonder since we don't have the free's testing done. I am going to see if my regular doctor can run those for me, for my peace of mind, until I can get into another endo.

Thanks everyone for listening.


----------



## joplin1975

Well, voto, that's crazy disappointing!!! I'm so sorry.

You really can only dose Armour by looking at free t3. You TSH is going to be quite low when on Armour, making the test pretty useless. My TSH can get to that range on synthroid alone, so you aren't really that hyper (if we are only comparing TSH). Most people on Armour have really, really low TSH numbers. Considering yours is just barely hyper and you have symptoms, it stands to reason you need a boost in meds.

The pap cancer IS an incidental finding, but that doesn't mean she should run some basic test on a semi-regular basis, just to make sure the incidental funding doesn't morph into something more. You should have your thyroglobulin and thyroglobulin AB run at least once a year. Note: The only down side with Armour in thyca patients is that it does contain thyroglobulin naturally and so it can, in some people, raise that number a smidgen.

Let us know how things go with your primary physician, ok?


----------



## voto23

Thank you, joplin1975, for the validation! Yes, it was crazy disappointing! :-/

I went ahead and paid out-of-pocket and had labs done this morning for free t3 and freet4. I knew it could be quite a few days before I could get them done with another doctor

and I just need peace of mind. In the mean time, I will be working to find a new endo, and then I will already have those labs done and can take them with me.

I agree that some sort of attention and monitoring should be done about the cancer. I would be fine with once a year blood work etc., again, just for my peace of mind.

I will update in a couple days with the lab results. I am very curious to see what they are!


----------



## jenny v

Oh yeah, ditch that doc post haste! What an idiot! You know more about post TT treatment than her at this point.

You don't necessarily need an endo to manage your meds, just someone who is well versed in hormones and thyroids. My internist manages my Armour (she's a former gyno who went into integrative medicine).


----------



## voto23

jenny v, that is a very good thought. I just "assume" I should go to an endo, but I will definitely look into other doctors as well. Thanks for the imput!


----------



## voto23

Here are results from labs I had done yesterday. (I am 6 weeks post TT and on 90mg Armour)

TSH 0.574 0.450-4.500 uIU/mL 01
T4,Free 0.79 LOW 0.82-1.77 ng/dL 01
T3Free, 2.5 2.0-4.4 pg/mL

Sadly, they are just where I thought they'd be. And my endo said I was hyper and to take LESS medicine!!!! I'm still waiting to hear back from my primary about another doctor recommendation as well as researching on my own. I know it will be awhile before I can get in. I don't know what to do? I have expressed this to my primary and have asked if they can help me with dosing in the mean time.

I know these labs are low and the free's should be in upper part of the range. Just curious if these labs reflect anything else to anyone??.....


----------



## joplin1975

Honestly, I think it just points to under-medication (well, that and a doctor who clearly doesn't understand how to dose Armour).


----------



## jenny v

You're on Armour, right? If so, Armour leads to a typically lower TSH, so you can't rely on that to dose. Clearly your doctor doesn't get this and is totally ignoring the Frees, which is what you have to look at to dose. You definitely need a bump up in medication.


----------



## voto23

Hi All,

Well, I haven't really gotten anywhere in the last two weeks. I have been trying to work with my primary care doctor and current endo about getting properly medicated after my TT (8weeks ago).

After a week of back and forth messages with my primary she said for me to "follow up with my current endo or seek a 2nd opinion". I had told her I would be fine having her help me with my thyroid testing and medication but I guess she doesn't feel comfortable doing that. .....that was a disappointment. And it was a disappointment to wait a week and be told THAT. What a waste of time.

I have also been trying to have my current endo help me further. I asked her to test my free's and I explained how I would like to be dosed by them and my symptoms and NOT just tsh. She agreed to run the free's. I was so happy she agreed to run them and was hoping, after seeing them, that she'd increase my meds.

Here are the results:

tested last week 12/9

Free T3 2.7 (2.3-4.2)

Free T4 0.9 (0.8-1.8)

Here is my endo's message to me after the lab results came in: "I honestly feel you need to get a second opinion. I don't think I can help you. These labs are normal."

I am so in shock, that I honestly don't know what to say. That was like a punch to the gut. Not even so much that she didn't feel I needed more medication but just the feeling that she is completely discarding me. I've only seen her once since my surgery!!

I am so frustrated and having a hard time navigating all this. I feel so let down by my doctors. I know I will pick myself back up and push forward but (as a lot of you know) that is so exhausting, especially when you are feeling bad.

**I am asking for PM from anyone that knows of a good thyroid doctor in the St. Louis, Mo area. Thanks.**


----------



## joplin1975

Oh, man...how disappointing. I'm so sorry. I don't live anywhere near St. Louis and can't help, but wanted you to know I'm still rooting for you.


----------



## voto23

Thank you, joplin1975, that really means a lot.


----------



## Lovlkn

> I am so frustrated and having a hard time navigating all this. I feel so let down by my doctors. I know I will pick myself back up and push forward but (as a lot of you know) that is so exhausting, especially when you are feeling bad.


Been there - done that. I feel your pain and discouragement. Keep the faith - in yourself and your ability to direct your doctors into the medications you need. It really comes down to YOU! If a doctor does not listen then find another that will.

Post TT, I had to fire my endo who treated my Graves and also her partner. Never, ever go to a second doctor in the same practice as they will not treat you differently and follow the notes in your file from the 1st one.

I then went to endo #3 and he also would only dose on TSH so I fired him and went to my GP who worked with me for awhile and believed my reasoning for my low TSH and all the medical studies of "proof" I brought to her - that lasted about 1 year and she got spooked my the TSH and began lowering my replacement. I was preparing for this and began seeing a 2nd doctor at the same time and she also agreed with my reasoning for my low TSH for a period of time, even ran a TBII which proved I had the stimulating antibodies , but eventually she spooked and started to reduce my med's. By this time I was already on Cytomel and had prescriptions on hand to do my own experimentation for what I needed to feel my best and paid out of pocket for labs I ordered off the internet.

Then - an acquaintance of mine was being treated for Graves by a OD and I figured if he felt comfortable treating her then he should understand and thank GOD he does indeed dose my based on my FT-4 and FT-3, although there have been times I presented a bit hypo he told me to remain on what I was taking. My lab history shows that the body does indeed ebb and flow as far as thyroid hormone need, even taking the same medications at the same time everyday.

It will get better - stop wasting time and energy on doctors who will not work with you and fill every prescription refill you have in between looking for a doctor, you do not want to find yourself running out of med's. You may spend a few extra $$ but in the long run it's worth it to help dial in your proper replacement.


----------



## voto23

lovlkn, Thank you for the advice and pep talk! I am sorry you had to go through so much but am happy to hear you have finally found a good doctor and are doing well.

I don't know why, but it still amazes me at the lack of knowledge these "thyroid specialist" have. Every time I go to a doctor, and they treat me the way my current endo is doing, I'm shocked. But then I try to brush it off and move forward. Tough to do time after time after time, but like you said it really comes down to US!! We have to be in charge of our thyroid health and WE have to keep pushing until we find a knowledgeable doctor.

And good advice about filling every prescription! I have already realized that, and am happy my current endo gave me a 90 day supply with 1 refill haha!

Thanks again, lovlkn, for your response.


----------



## jenny v

That was good advice on keeping an extra stock of medication. I've had a few dosage changes over the months on my Armour and I still fill every single one of them until the refills run out. I don't take them all, obviously, but I hoard them in my medicine cabinet so when the zombie apocalypse hits I have a three month supply, lol!


----------



## voto23

Hi Everyone! Well, it's been 3 months since my last post and I'm sorry to say that I'm not, yet, at

a good place with my replacement meds.

I have tried working with my endo and am now done with her. My endo kept wanting to

REDUCE my meds based only on TSH. She has told me twice that all my symptoms have

nothing to do with my thyroid. (funny she says that, because I don't even have one!!!)

After my surgery (5 months ago) , she started me on 90mg Armour (1 1/2 grains) , my free T3, free T4

came back at bottom of range. She refused to up my dose. Last month she actually wanted

to reduce my meds to 60 mg (1 grain) due to my tsh.

I said my free's were at the bottom of the range at 90mg.....I would be scared to death to

lower it to 60mg. Needless to say, I AM DONE WITH HER. I tried working with her but

my life is worth more to me than to keep trying to work with her.

It still amazes me at the lack of knowledge these endos have! It's scary and makes me so

sad for the thyroid community.

The reason I am even able to post this today is because I feel like I can function again. I had

to take matters into my own hands (I DO NOT recommend this) and I upped my meds 1/2 grain

when I walked out of my last appt 5 weeks ago. I have been seeking a new endo and am

looking forward to seeing a couple in the next few weeks.

My fingers are crossed that I find one that "gets it"!! And hopefully my next post will be positive! 

Best wishes to all that are seeking help!


----------



## Octavia

You don't necessarily HAVE to see an endo. I have never seen an endo. My thyroid meds are managed by my primary care physician. Would your PCP be comfortable helping you manage your thyroid meds?


----------



## voto23

Hi Octavia, After my surgery, when I was starting to realize my endo might not work for me, I did

speak with my PCP and asked her if she would help me manage my meds. At that time she didn't feel

comfortable doing it and suggested I find a new endo.

But through all this the last 5 months she has agreed to run tests for me that the endo

won't and has been more open and supportive. I think I will ask her again and maybe

she will have a different view and agree to help me.

Thanks for bringing that up! And for some reason I get stuck on thinking I have to

go to an endo. I need to remember they're not the only answer!

Thanks, again, Octavia


----------



## Octavia

Well, it sure sounds like your PCP listens to you a lot more effectively than your endo does! You may need to teach your PCP a little about what you've learned regarding Armour, but it seems like she's at least somewhat open to working with you on this.


----------



## voto23

Hello everyone!, It has been 5 months since my last post and I have finally come to a good place. I am posting in

this thread, hopefully for the last time, to finish the story of my journey and to help others that might be on the same path.

(I had TT Oct '14....had been undermedicated on Armour with an endo that worshiped TSH. She started me on 90mg and

wanted to lower to 60mg.....that is where this story continues)

I have found a wonderful doctor. It took me 4 months to get in but totally worth it. He is a board certified internist but also

practices functional medicine. After a lot of reminders from others on this board, it finally sunk in that I don't have to see

an endo. They are not always the answer. 

I saw this doctor at the beginning of June. He switched me to NatureThroid (he prefers this). That was fine with me. I

honestly didn't have issues with the Armour I was on and am not having issues with NatureThroid. I do well on these.

He was shocked that I was only on 120mg ( I had raised it 1/2 grain after walking out of appt with last endo). Even at

120mg my free's were still very low. His goal was to get me to 3 grains. It took a couple months for me to raise my

dosage as I have to do things slowly. My body is very sensitive to changes.

What I loved about this doctor is that at my first appt, when we were looking at my blood work, he actually took out

his pen and drew an X through the TSH. He said we are never going to look at this. He said our goal was to get my freet3

to the upper part of the range....or to where I feel my best. I wanted to hug this doctor!!!!!!!! 

Finally!!!....I found a doctor who "got it".

I just had my 3 month check up and my meds are being raised to 3 1/2 grains NatureThroid due to my free's not

being quite where we want them and I'm not quite where I want to be with energy etc.

My hope, with this post, is that others can learn that you don't have to see an endo. Find ANY doctor who get's it. I

understand that when you're undermedicated (and messed up mentally) it's hard to think straight. When I was on such

a low dose, I was having some anxiety, heart palps, difficulty sleeping....and when you're having a doctor telling you that you

are Hyperthyroid because of your tsh, (even when your free's are in the basement)....it messes with your head. You start thinking maybe they're right....maybe you have too much medicine and are hyper. That couldn't be further from the truth! Many hyper and hypo symptoms cross the line and are similar. YOU know your body and when things aren't right.

It has been a long journey for me. Next month will be my 1 year anniversary since having my TT. I would have never

thought it would have taken me this long to get to a good place! I was one that had done my research and felt pretty

informed, had learned a lot, mostly from the wonderful ppl who run this board and post often....but I still struggled a long time.

All that I suffered this last year was because of having an unknowledgeable doctor. I know I still have a way to go and

am still healing since finally getting on a proper dose, but it feels great to have a doctor who listens to me and is on my side.

For those struggling.....keep searching for a good doctor! You know your body. You know all the information you have

learned about TSH and free's. Don't let a doctor tell you otherwise. Keep searching for someone that will help you.

Don't give up hope!!

Best wishes for all that are on this thyroid journey.


----------



## Octavia

Nice post, voto23. Sounds like you found a great doctor!


----------

