Undetectable tsh post thyroid cancer

[TTandnowhyper]

Hi....

Acting to get some I sight because I'm not gettin much at home in Australia.

I'm nine months post op for stage 2 pappilary thyroid ca. Three months post RAI. the cancer was found by accident after removal of a branchial cyst... Lucky. During surgery my jugular vein was nicked and my hemoglobin dropped to 5 so I was in hospital for a while. Adjusting my meds was easy and up until July I am having problems getting the correct dose.
I was on 100 per day and feeling awesome. Then in July my Endo upped it to 150 per day.. I asked her not to as I don't feel well on a higher dose.. Well well well it's been a nightmare since. She keeps telling me my tsh needs to be undetectable so cancer doesn't return.... I get that, but am finding it really difficult.

I have ended up in hospital a few times with a number of symptoms ranging from heart palps, extremely hot even though my temp is fine grrrrr sweating, nauses, dizziness, blurred vision etc. I was even on a drip for dehydration??

At that point my tsh was <0.01..... My recent bloods are
Tsh 0.03.       Ref 0.50-4.0
Ft3 4.8.                 3.5-6.5
Ft4 20.3.                10.0-19.0

When the Endo called me telling me she will bring forward my appointment she said I need to have an undetectable tsh and I'm scared she will up my dose again and I will feel bad again. I'm on 100 now and I can just manage.

Any thoughts???


This discussion is related to Post Thyroid Cancer Follow-up Procedures.

[gizzykitty]

Hello, I have been there. I also had my thyroid and lymphnode removed due to papillary carcinoma. I was not put in suppresion therapy till almost 5 years after my surgery. And when they did I did not like them at all. I had the tremors. My muscles could not relax. I could not sit down and watch a movie and could barely sleep it was miserable. I dropped so much weight really quickly. I would go to the doctor and they would just tell me that my levels were where they wanted them and that they could add an antidepressant. I wouldn't take that medication. But I eventually went to my primary care physician in tears and decided to do the xanax. The first dosing I took was only 1/4 of the pill and I felt every muscle relax. And after so long of being stuck that way it was such a relief. Then I was able to actually get sleep without the continued cloudy effect that antidepressants would do. I am telling you this information for educational purposes only. I do not want you to think that this is always the way to go. It at the time was just the only thing that helped me. I eventually got to the point that I didn't even have to take them and was fine for so long. I am now 13 yrs after my surgery and I no longer have to be on suppression therapy ( Thank Goodness). My theory on all this is if I feel good then my body is doing good. If I feel like crap then that can't be good on my body at all. We have to be able to relax if we can't then it creates all kinds of other problems. Good Luck:)

[TTandnowhyper]

Thanks for that :)
Same as you, I did have some nodes removed and a parathyroid. Omg the restless sleep is a nightmare. I have been prescribed valiums for night but I take one around every 4 days so I don't rely on them.
My GP also wanted to put me on beta blockers but I have such a history with low blood pressure that it may not be suitable. When my Endo called she did say we will do some other testing as I am maybe sensitive to the brand/pill.

I guess I thought I would be atleast alittle better by now. I'm not at work because my symptoms are quite bad at time and I just want to get back to normal.

Congrats on being cancer free :) now you don't have to have such a suppressed TSH I'm assuming your feeling a lot better?

[gimel]

Just tried to post a reply to both of your threads and it was not accepted for some reason.  This is a trial.

[gimel]

No luck here with my post.  Can't imagine why, but I sent it by PM and it went through.  

[TTandnowhyper]

Hiya, I did get your PM and appreciate it.
I just wanted to ask why you keep saying I'm Hypo? Excuse my ignorance, it's just when I try to research Hypo/Hyper I feel I'm more on the Hyper side and the diagnosis was Hyper.
I'm willing to try do anything to get back to normal and my Endo app is tomorrow so I really hope she will do something and I will ask what my levels should be and why do I keep feeling this way..... Or if a lot of patients go through the same thing.. Eyhhh

[gimel]

I first mentioned hypo because of the limited info on symptoms and test results in your initial posts.  Your Free T3 being below the middle of its range, and relatively low dosage of thyroid med (for a full daily replacement) seemed to indicate the likelihood of being hypo.  Even though you have some symptoms that are sometimes related to hyperthyroidism, we won't really know until you have test results from the 24 hour saliva (or urine) cortisol test and also results from the ferritin test and a full iron test panel.  That is why I listed the many symptoms that can occur from adrenal fatigue,  such as the following:

Fatigue/Weakness
Poor Appetite
Weight Loss
Nausea, Diarrhea
Muscle, joint, abdominal pain
Light-headedness upon standing
Low blood sodium level
Skin darkening
Low blood potassium level
anxiety or nervousness
shakiness
dizziness
racing heart
feeling hot,

In addition, low ferritin can cause the following symptoms.

    Minor aches
    Fatigue
    Weakness
    Heart palpitations
    Increased pulse
    Loss of energy
    Loss of libido
    Confusion
    Irritability
    Shortness of breath

So low ferritin symptoms can mimic hypothyroidism.  Shortness of breath is also a symptom of low ferritin levels. 93% of patients with ferritin under 50 ng/ml were iron deficient.  Excessively low ferritin as well as low iron can resulting in hyper symptoms when raising desiccated thyroid (armour).  Severely low ferritin or iron can be improved quickly with iron injections or IV iron infusion - a few weeks as compared to a few months from iron supplementation.  


So, in view of all this I would be reluctant to say that you are hyperthyroid.  We really need more test information.

[TTandnowhyper]

Thanks for clearing that up.
I am still confused with it all because I NEVER had any problems/symptoms until I had a branchial cyst removed this year and by accident was found i had cancer.
My GP just orders TFTs and my Endo who I see every three months don't do much here.... Iv been to a few different endos to only be told to suck it up for a few months so I lost Abit of hope but I'll get there.

Thanks again though :)

[TTandnowhyper]

Hi...
I just wanted to say thank you again for all advice so far.
Just saw my Endo and will se her again in 6 weeks. Today she reduced my dose bc of my symptoms and blood work but am getting tested for all sorts in 6 weeks.
Including B12, iron etc the rest I don't understand lol

[gizzykitty]

That is really good new:) I am also going to my physician on monday and I am going to request alot of the testing that gimel was suggesting for you. I have thought for some time now that I was suffering from adrenal fatigue but when spoke about it to my physician she dismissed it as that was not a definite disease so nothing was done. But I have had this thyroid disease since I was sixteen and I looked back through every lab report I could find and they have never checked my ft3. So I am going to insist this be done so I can stop dwelling on all this and start getting better. Let me know how your tests come out I am very interested.

[TTandnowhyper]

It is very difficult to suggest tests to them that THEY didn't suggest.
I must admit my Endo was lovely this time, with a physical exam and recent bloods she did say I'm alittle high so reduced me to 80mcg per day.

I do hope the tests you ask for she will be able to do... She said if I were to go on the Beta Blockers I would pass out in 20 minutes bc of my lower then low blood pressure and weight.

How old are you now? Have you been struggling for that long, I'm so sorry to hear that. Why were you not taking meds straight after your surgery? Or did you have a partial thyroidectomy?

It is true what they say, be patient. I have only worked a couple months of this whole year and had to close up my own business bc of it. It just takes time and when you get there you won't let a day pass you by. Starting again is what life is about. The hardest thing for me is getting around the time it takes for meds to settle when you change a dose... It would be much easier if it was a few days, even a week eyhh

It will work out for you :)

[gizzykitty]

I sent a message and I guess it did not go through.

  That is good maybe you'll get alittle relief with the decrease and be able to get back to  normal:)

   I am 33 now almost 34. So I have been hypo for many years now. I have not had to struggle that long and even when I was diagnosed I did not feel the symptoms of hypo at all. I was young and had energy and worked out and did everything as normal. It was not till my thyroid was removed that I really felt what it was like to be hypo.

  Then I had to feel as close as could be what it would be like to be hyper as well and that was uncomfortable. I always say I have my good years and my bad and luckly the good years make the bad ones not that terrible.

  And I did take the thyroid meds after surgery I was just not put into suppression therapy right away. I was not put into suppression therapy until about 4+ years after the surgery and only because I had basically passed out and was taken to the emergency room, and after testing they determined that I had a high tsh of 80's or 90's and a low calcium level. After that I was sent to the endo.


  The only reason they did not put me in suppression therapy was lack of knowledge I would say and that I did not see the endo I went to my Primary Care Physician and he did not keep me on high doses of meds. Then when I was put on the suppression therapy plan then he just followed the orders of the endo because it was too hard for that doctor to see me since I lived 2 hours away. And there are no endo's in my town.

  
  

[gizzykitty]

Also I did get to talk to my physician and she is going to change my meds. I did some research as to what the ingredients were in the brand of levo that I use and one of the ingredients I know I am allergic too. It is (aluminum oxide) which is also the ingredient in deoterant as the antipersprant. There is also another ingredient in the med called acacia which is a brush and has contributed to the worsening of seasonal and hay fever allergies. So that is a tid bit. I was having a flushing reaction everytime they would try to increase and I could not use a brand of deoterant that I have been able too for years even with the aluminum allergy because I all the sudden broke out in a rash. Also I would get shortness of breath. And felt as if my face had a mild sunburn.

  So after doing more research I found that levoxyl does not contain either ingredient and so I am supposed to start that med this week. I am alittle nervous because she has increased my meds by 25mcg's and I do not want to have heart palps so I am not really sure how to ensure that I don't get those because she only prescribed me one pill of 175mcg's. But hopefully that will go well and I will not have problems with it.

  Oh yeah and she actually let me pick the tests I wanted to do. That was great! So i have to do those in 4 to 6 weeks unless I feel really bad then I can go sooner. So here is hoping that it all goes well.

[TTandnowhyper]

It's such a shame we, as the patients need to do so much research for our own condition.
I never really had any knowledge what hypo and hyper were, I didn't really even know what a thyroid did til I was diagnosed. I was feeling the best I ever did to be honest. I had my TT three weeks after being diagnosed and I was under the impression it was just one pill per day and I'd be fine...

Wellllllllll that's NOT the case lol. Straight out of surgery I was hypo til I started meds (couldn't swallow for a while from complications during surgery) then was fine and now I'm a mess again. I keep telling them my symptoms and one Endo I saw who came highly recommended told me to 'suck it up' for a while. That's what I have been doing douche and don't want to anymore lol I want results.

I suppose it's hard for us all as there is a wait to see if the meds are suitable for you or if they are the correct dose and that's the crappy thing. In the mean time feeling sick all the time is making me sick.

An increase by 25 shouldn't be too bad as that is the recommended dose to increase by not by 50 etc. I hope it works for you and your tests come back with great results. Also monitor how you feel bc if you do get heart palps maybe a dose in between would be beneficial?? Just a thought.

Good luck :)

[gizzykitty]

I was told how great i would feel once my thyroid was removed ( what a joke that was). I didn't have a choice not to do the surgery so now i really do have to suck it up.lol   All we can do is try to find what makes us feel better now. I am currently having a hard time mega lack of energy, feeling hot, rapid heart beat, dizzy and like i am fighting not to pass out. So this is not fun.lol. i did go do my blood work early so maybe they can figure it out. I was not able to do the increase yet cause my attempt caused problems. So we will see:)

[TTandnowhyper]

Can I ask why you are increasing the meds and not reducing them???

I only say that because all these the stmptoms ou have seem like your over medicated. Once ou remove your thyroid you become hypo.. I was fine until the increase of meds and am now diagnosed 'doctor induced hyper'.

It ***** because I need to be on a higher dose so the cancer doesnt return but anything ver 100 per day makes me feel pretty bad. I have another 5 weeks to see some new results.

I dont know if any of this helps, being in Australia we don't use the brands you guys do and we don't use a combination of T4 & T3 meds which I have read a lot on here that people feel heaps better on the combo meds.

Ps, I know what you mean..... I felt better with a cancerous thyroid then without one lol I'm glad it's out and it's just being patient.

I never thought my symptoms would ever go away, they do, it just takes time. The meds take a few weeks to show in your bloods and maybe longer for symptoms to improve. Keep noteon hoe you feel with each change :)

[redheadaussie]

Hi, I am in Australia, too. I am in just outside of Melbourne. Where are you based?
Don't forget that here in the Land of Oz, many of our endo's are actually more diabetes rather than thryoid trained. I have been through 3 endo's and am now seeing a Professor who has 1000 times more brains than the others!

Being on a higher dose is to reduce the chance of any thyroid cells which may have cancer in them turn into true cancers.
Did you have any antibodies testing done?
I'd also be asking for thyroglobulin testing to be done yearly. This will show if any cancer is still in your body. Have you had that tested prior to surgery and after? This is very important to know what is happening with the cancer.
Being on a higher dose may not suit you at present and can cause issues as you are experiencing. What were your previous TSH etc levels prior to being on 150mcgs? Have you had any recent testings done?
It can take up to a year to get the levels right for some people. Me, personally, am still struggling after 5 years, but my sisters are all perfectly fine with their issues....grrrrrrr!
Cheers

[TTandnowhyper]

Hiiiiiii, nice to see someone from home home on here :)
I am in inner Melbourne, I am the same. Been through both public and private endos and the private told me to " suck it up " for a few months.
That's what I have been doing you douche... I said that in a nicer way lol
Our doctors ARE more diabetes and even when I find one who is thyroid, there not. That's pretty sucky you have been dealing with it for so long.... Not all bad though? Did you also have cancer? What did your sisters have?
You should try there doctors if you haven't already.
I'm seeing a new one next week...
As far as testing, every time I ask for those tests they say it's too early, my GP doesn't even want to do them bc it hasn't been a year. I even want a new GP but this is the one I've seen since I as a baby.
I did have thyrogobulin done before surgery and I think after my RAI. I was told I took well to that and no more cancer.
It's amazing how some people are fine and others struggle.

[gizzykitty]

Hey:) so i got the new labs my tsh is 1.59 (0.36-33.74) my T4 is 13.9 (4.5-10.9) my FT3 2.8 (2.3- 4.2). So she is going to decrease my meds to 137mcg's and see how i feel. I really hope that will make me feel better.

[TTandnowhyper]

Hiiiiii :)
That's a good sign... Are you feeling any better so far?
Just takes time!

[gizzykitty]

I just went to pick up the new prescription so i will start the first dose. I hope it will be a good. Just weird how all the sudden my levels went in the low range since i've been on 150 for a couple months now. It was a relief though to know that this was the problem. I am also starting the levoxyl also so i have to see how that does too. How are you feeling since they decreased your meds. I'm gonna say the only part i will miss about being this high is the weight loss. Even though i do not have much of an appetite right now i forced down a donut and a half along with a cupcake and numerous terrible things and still lost weight. So now it will be back to watching everything i eat but thats alright better to feel well...

[gizzykitty]

I just went to pick up the new prescription so i will start the first dose. I hope it will be a good. Just weird how all the sudden my levels went in the low range since i've been on 150 for a couple months now. It was a relief though to know that this was the problem. I am also starting the levoxyl also so i have to see how that does too. How are you feeling since they decreased your meds. I'm gonna say the only part i will miss about being this high is the weight loss. Even though i do not have much of an appetite right now i forced down a donut and a half along with a cupcake and numerous terrible things and still lost weight. So now it will be back to watching everything i eat but thats alright better to feel well...

[TTandnowhyper]

I still don't understand some things sometimes lol
With me, the higher the dose I loose more weight....
Have you always been thin or did you loose it after the removal of your thyroid?
I am feeling better on the lower dose however I still feel something is missing. We know our bodies better then anyone so when you know something is up its best to get it checked.
I still feel heaps sick and dizzy its sooooo frustrating.
With your low levels, I always get told that it takes almost one month before the new dose change has any effect and to show in our bloods. It also takes a couple months to see if they stabilize so maybe thats why it's dropped to a low level.
I see a new Endo on Monday for a different opinion AGAIN and see what happens.

[gizzykitty]

At least they have tons of endos there it seems. There is not a single endo in my town. The nearest are all two hours away with waiting lists of a month or more. I went and got my meds and took the new dose. The strange thing is i do not have the feeling like someone punched my heart today that is a relief. But has me wondering why so quickly. I dont understand all these things either and i have had this disorder for along time. You learn something new everyday. And your right we know ourselves better then anyone else does and we all seem to react differently to the meds and the disorder on severity of symptoms. And unfortunately now i would really not say im thin. I  used to be before the removal. I am not a whale though but close.lol no i seem to carry my weight well but had trouble losing unless i ate practically nothing. When i am where i need to be in the thyroid range then i lose weight just fine. But that has been a struggle since my levels were jumping all over. I would love to be back where i was before the surgery and two kids but i have also come to terms with i may never be and i just need to try to eat right and take care of myself and be happy with where i'm at (of course this is not easy) haha.

[TTandnowhyper]

That's great if you feel relief already :)
We are lucky with having so many endos here, unfortunately MOST of them specialize in diabetes so not much help lol
I haven't had much weight problems so far, I have always been thin and hard to put on weight but when they increased the dose I lost more.....
At the moment I haven't been watching what I eat but I need to start before and if I start gaining the weight.
Have you heard of Mary Shanon??? If you go on her site, there are numerous links, info on weight, meds etc.
Her site is all thyroid based... Heaps informative :)