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Undetectable tsh post thyroid cancer
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Undetectable tsh post thyroid cancer

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.
76 Comments Post a Comment
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4294592_tn?1354145195
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:)
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Avatar_m_tn
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?
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Avatar_m_tn
Just tried to post a reply to both of your threads and it was not accepted for some reason.  This is a trial.
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Avatar_m_tn
No luck here with my post.  Can't imagine why, but I sent it by PM and it went through.  
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Avatar_m_tn
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
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Avatar_m_tn
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.
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Avatar_m_tn
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 :)
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Avatar_m_tn
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

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4294592_tn?1354145195
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.
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Avatar_m_tn
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 :)
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4294592_tn?1354145195
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.

  
  
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4294592_tn?1354145195
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.
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Avatar_m_tn
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 :)
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4294592_tn?1354145195
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:)
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Avatar_m_tn
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 :)
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219241_tn?1357815389
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

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Avatar_m_tn
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.
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4294592_tn?1354145195
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.
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Avatar_m_tn
Hiiiiii :)
That's a good sign... Are you feeling any better so far?
Just takes time!
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4294592_tn?1354145195
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...
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4294592_tn?1354145195
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...
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Avatar_m_tn
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.
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4294592_tn?1354145195
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.
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Avatar_m_tn
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 :)
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4294592_tn?1354145195
I haven't heard of her before now. I always kept my head in books studying the endocrine system. I have a whole closet full of medical books. I am such a nerd.lol but now i am looking up all kinds of things to get myself on the right track. I am a single mother so i can't afford to be ill and not work. But i'll check out her site:). The doctor i work with believes in an all around approach to the endocrine system and balancing it out. He told me that there is a functional range they use  he said it is 1.8- 3 (tsh) he said usually is people are out of this range they dont feel well
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Avatar_m_tn
Lol a closet full isnt nerdy... We do want to know all we can.
Have a look at her site, it is quite informative.
I think different labs, countries etc have different ranges, our TSH range is
0.04-5.0.
We just have to monitor how we feel each time we change a dose/meds.
Good luck to us both :)
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Avatar_m_tn
Hi again,
Just wondering if you can help. Just had an Endo check up and ALL my labs were within range. I take 85 per day of thyroxine.
I feel extremely tired, dizzy and nauses every day. My iron, folate b12 etc are all ok.
Any suggestions on what I can do or take to get some relief. My heart palps, irregular heart beat and tremors have seemed to subside alittle, I just can't shake off the rest. Eyhh soooooo tired of this.
Thanks
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Avatar_m_tn
Just wanting some of your insight.

I have just had all my labs done, TFTs, calcium, ferritin, cortisol etc and they have all come back FINE. I'm kind of getting to a point where I don't know what to do.

I feel extremely tired all the time, when I stand for too long I get reall dizzy and light headed (especially in a line at the bank etc ). All my symptoms from before, heart pals, tremors have almost gone. Just left with not being able to tolerate the heat. It's quite hot here now in OZ.

Any suggestions of what may be happening? I'm keeping myself so hydrated,eating well etc and I still can't shake this one off???
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Avatar_m_tn
I just posted a reply to your new post, so I'm going to request that it be deleted as a duplicate.  It is hard  for members to keep up with your previous info when you start a new thread each time.  Anyway, here is what I said.


By "fine" I assume that you mean that all your test results are within the so-called "normal" range.  Just being within range is frequently inadequate.  The ranges are typically too broad.  Please post results and their reference ranges and members will be glad to give their opinions.

Also, it wasn't clear about your current symptoms.  Do you still feel extremely tired and real dizzy?   Or was that from before?


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Avatar_m_tn
Hi again... Sorry about the new posts but thanks for responding.
I tried to get a copy and just my luck the printer wasn't working.

I am extremely tired, dizzy, lightheaded and feel sick a lot through out the day.

I don't see my Endo till mid jan and she said to stay on this dose to see if it stableises. I was feeling worse on a higher dose with the heart palps, tremors, hot flushes and I was also nauses also. I have been on 85mcg per day for 4 weeks now..

My doctor just gave me anti depressants and said I'm suffering from anxiety. I'm assuming he said that because he doesn't know what's wrong. I told him I don't want to take these meds and if I wasn't suffering anxiety when I told out I had cancer then why would I be anxious now.

I have an appointment next week with another doctore who is testing for thyrogobulin and antibodies so maybe this may show something ?

Sorry to drain it....

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Avatar_m_tn
I haven't taken the time to go back through your prior posts, but I wondered if you have been tested for adrenal issues and low ferritin?  I ask this because hypothyroid patients sometimes  have reactions similar to yours, when taking thyroid meds before their cortisol and/or ferritin issues are addressed adequately.

If you haven't been tested for those, then the best ones would be a 24 hour saliva (or urine ) cortisol test, and a ferritin test, along with a full iron test panel.
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Avatar_m_tn
Yep, had all that done too and they were fine :( so have never wanted bloods to come back bad but wanted them to so I could find something.

Cortisol, ferritin, liver, full blood and iron panel... All fine. Sorry to keep asking questions but I just don't know what to do anymore. I will ask my Endo if maybe I need a slight increase in meds. I know 100 is a nightmare and 85 maybe slightly too low?? Or maybe even a lower dose.

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4294592_tn?1354145195
Hey, I seen your post and feel your pain. They cant really find a happy medium for me either. Last labs i did showed i was in the high end of normal but i felt awful couldnt even get through a full day of work. I felt like my body was going to fall to the floor. So the doctor decreased meds by 12mcgs
Dont really know if ots working or not i just  struggle to figure it all out. But i agree with gimel as a doctor i work with told me that the range does not suit everyone. He was certain even without the tests that i am suffering from adrenal fatigue. And unless your below the so called range they will do nothing to treat you. But if your low in range that would indicate to him your adrenals meed support. I have been and am still kinda there with your symptoms. Dizzy and etc.... i would get ranges and possibly look into a naturopathic doc as they seem to look at the body as a whole instead of treating symptoms. Just a thought since you have been to so many endo's. I plan to go to one once i have the cash because my doctor will not test everything. Also everytime you change the dose there will be an adjusting period and i usually feel worse when i change dose at first.
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Avatar_m_tn
Before we assume that all your test results that were "fine" are truly adequate, and not just in the low end of their so-called "normal" range, let's please have a look at all those actual test results and their reference ranges.
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Avatar_m_tn
Hi and thanks again...

So here are the tests:

Hemoglobin 10.6       ref 11.5/16.5 (during surgery I lost a lot of blood and my hemoglobin dropped to 5, don't know if that helps at all)
B12 317                     ref 150/700
Folate 1095               ref >630
Cortisol 476               ref 119/618
Ferritin 123                ref 15/165
Iron 15                       ref 7/27
Transferrin 2.0           ref 2.5/3.8
Calcium 2.30             ref 2.15/2.65

I hope these may help with ANYTHING.



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Avatar_m_tn
Just a question... Does cortisol testing show problems with adrenal glands or is a separate test needed??

Hmmm I only ask because when I try to research, it always mentions both.
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Avatar_m_tn
So I just had a thought.

Since my surgery in feb this year I find it soooooo hard to fall asleep. I end up awake for hours and not tired at all.

The doctors have prescribed me valpam 5 diazepam which I take almost every night but I have also been given temazepan 10.... These are so strong and I get hallucinations and weird thoughts.

Could I be feeling sick because of these meds? I can't seem to get to sleep without a pill, otherwise I lie there for hours and before I eventually gal asleep its time to get up in a few hours.

Racking my brain here
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Avatar_m_tn
Well, here's a couple of thoughts for you.  With the 150 mcg dosage of T4 your doctor was prescribing to suppress your TSH, your Free T4 was above the reference range, while your Free T3 was still below the middle of its range.  Then you started to have the symptoms of  palps, sweating, nauses, dizziness, blurred vision etc.  

My own experience several years ago was somewhat similar.  I had gotten up to a dosage of 225 T4 daily.  My Free T4 went over the range limit. but I didn't know until some time later that my Free T3 was in the lower end of the range.  I began having some of the symptoms you mention.  Due to the palps, and a fluttering feeling, I ended up at the hospital to make sure I was not having a heart problem,   I even wore a Holter Monitor and an Event Recorder for about 3 weeks.  Nothing abnormal with the heart.  

About this time I began searching the net for info and lucked out and found this Forum.  After learning about the importance of Free T3, I finally understood that my body was not converting all that T4 to T3 adequately, so I still had lingering hypo symptoms, and then the additional symptoms I mentioned, when my Free T4 got up over the range limit.  

So this makes me wonder if you should consider asking your doctor to reduce your T4 meds and replace with an equivalent dose of T3.  Getting your Free T4 back down to the middle of its range, and raising your Free T3 level into the upper third of its range, might achieve the doctor's goal of TSH suppression (T3 is more effective for that than T4, I have read) and also give you enough Free T3 to relieve any lingering hypo symptoms.  

The only other thought I have for you is that some of the symptoms you mentioned have been identified as possibly results from the effect of low cortisol when taking thyroid meds.  I know that you have posted an acceptable  result from a cortisol test, but it was only one test.  You really need to know how your cortisol levels are over the full day.  The best test for that is a 24 hour saliva test, where multiple samples are taken.  A viable alternative is the 24 hour urine test, also with multiple samples.

I know very little about the valpam 5 diazepam, but after reading this info, I had some reservations.

"PRESCRIBED FOR: Diazepam is used for the treatment of anxiety disorders. Diazepam also is used for the treatment of agitation, tremors, delirium, seizures, and hallucinations resulting from alcohol withdrawal. It is used for the treatment of seizures and relief of muscle spasms in some neurological diseases.

SIDE EFFECTS: The most frequent side effects of diazepam are drowsiness, fatigue, and ataxia (loss of balance). Rarely, diazepam causes a paradoxical reaction with excitability, muscle spasm, lack of sleep, and rage. Confusion, depression, speech problems, and double vision are also rare side effects of diazepam.

Diazepam can lead to addiction (dependency), especially when higher dosages are used over prolonged periods of time. In patients addicted to diazepam or after prolonged use, abrupt discontinuation of the medicine may cause symptoms of withdrawal (insomnia, headaches, nausea, vomiting, lightheadedness, sweating, anxiety, and fatigue). Seizures can occur in more severe cases of withdrawal. Therefore, after extended use, diazepam should be slowly tapered under a doctor's supervision rather than abruptly stopping the medication."

Why would the doctor prescribe diazepam for insomnia?  There must be better alternatives.  I suggest that you discuss other alternatives with the doctor and consider getting off the diazepam.  
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THANK YOU SO MUCH....

I think he just prescribed them because there muscle relaxants also so thought they would help. I am going to ask or an alternative when I see him this week when I get my TFT results. Maybe a natutral replacement, If there is such a thing.

Regarding T3 meds, we don't use the combination of T4 and T3 meds in OZ. last time I asked the Endo for this alternative she kind of shrugged it off and said once we find the correct dose of T4 things should get back to normal.

I am seeing my doctor tuesday and my Endo in mid Jan so I will put it to them again and see what they say. I don't know if I need to be suppressed for o
T the first year after surgery which will be feb or for a longer time. I guess I'll ask them that too.

Are tou much better now, after finding the correct dose??
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Avatar_m_tn
Just a couple of suggestions for your appointment Tuesday.  I think you should start by telling the doctor of all the hypothyroid symptoms you started with after having surgery and RAI.  Then talk about how scientific studies such as the following have shown that hypo symptoms correlate best with Free T3, while Free T4 and TSH did not correlate at all.   This is only logical since Free T3 is the thyroid hormone used in the body's cells.  

http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002

Then I would mention that studies have also shown that a significant number of hypo patients do not adequately convert T4 meds to T3.  You obviously do not because even with the large dose of T4 med driving your Free T4 over the range, your Free T3 is still in the lower half of the range.  So you are getting the wost of both situations, your Free T3 is not high enough to relieve hypo symptoms, and your Free T4 is well over the range limit, which can also lead to unwanted symptoms.  

At that point I think you should request that your T4 meds be reduced and a source of T3 be added to your meds, with the intent to raise your Free T3 level high enough to relieve hypo symptoms.  That will also keep your TSH suppressed, as the doctor wants.  

If you need some references about the need to medicate with both T4 and  T3, rather than T4 only, here are some good links.    

http://thyroid.about.com/b/2010/05/17/t3-superior-t4-levothyroxine-hypothyroidism-thyroid.htm

http://www.*************************/medical-research/

http://www.nejm.org/doi/full/10.1056/NEJM199902113400603



As for myself, I took the large dose of Synthroid for over 30 years, yet still had lingering hypo symptoms.  After finding out about the importance of Free T3 on this Forum, I got my doctor to test and it was confirmed that my Free T3 was too low in the range.  I was switched to Armour thyroid and after some tweaking of dosage, I have felt the best ever in the last 35 years.  From last tests my Free T3 was 3.9 (range of 2.3 - 4.2 pg/ml) and my Free T4 was 1.14 (range of .60 - 1.5 ng/dl).  Note that results vary from lab to lab and therefore must be compared to reference ranges from the same lab.  Position within the range is the thing to go by.  By the way, my TSH has been about .05 or less for well over 35 years now, without ever having hyper symptoms.  TSH, or the absence of TSH does not cause symptoms.  TSH is only an indicator of your hypothalamus/pituitary response to the levels of your thyroid hormones, and frequently a poor indicator at that.  TSH cannot be shown to correlate well with either Free T3 or Free T4, much less with symptoms, which are the most important consideration, and the prime reason patients go to a doctor in the first place.

One last thing I suggest is that you try to get the doctor to do a 24 hour/multiple sample test for cortisol (either saliva or urine), to rule in/or out the possibility of adrenal (cortisol) issues.  
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Thank you so much... I just printed out the info you sent. Glad you FINALLY got there :)

The tests I posted early November, I was diagnosed with Iatrogenic Hyperthyroidism. They also point to hyper because of my symptoms, weight loss (down to 46kgs) not even trying, hungry all the time, mild heart palps, fast heart beat, MAJOR intolerance to the heat. Also, I called around some pharmacies here and we do not use the T4/T3 combo.... This is the most frustrating part.

I will get him to to see why it's not converting and suggest T3 again and fingers crossed something may happen. I will get results of TFTs and thyroglobulin ab tomorrow also :) something my last Endo said there is no need to be checked for right now.

I will be posting after I see him lol
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Hi Gimel,

So ended up in ED last night with severe dizziness/nausea. My TFTs were fine but to adjust any meds (I suggested to add t3) I need to wait for my Endo appointment.

I did see my GP who suggested I have an ear viral infection and has prescribed me with stemetil.... Almost a case of vertigo. He did see fluid in there but said no need for antibiotics at this stage. I guess I'll just try this til I see the Endo :(



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Have you ever been diagnosed as having allergies?  I know that when I don't get my allergy shots as I should, and allergens are high, my inner ear eventually seems to get inflamed/swollen from the dust, pollen or mold in the air and I start feeling light headed and then dizzy.  After I get back on the shots, it goes away.  Just a thought.
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Thanks for that....

No allergies here. I'm thinking maybe my dose just needs to be lowered slightly because I'm still getting shakey (shaky) and heart flutters but for me always being tired and dizzy I think to up the dose lol
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OMG.... I just got a call from my Endo, who wants to up my dose of meds :( she said we will re check in the next four weeks.

She also said she needs my TSH as close to zero as possible and it's sitting at .18 which is almost close ro normal so she can't explain the dizziness. I guess I'll just go back to my GP and see if he can send me to a "brain" specialist.... Or a specialist to see if any things wrong.

Maybe me being so dizzy, weak and tired is bc I'm on such a low dose??

Eyhh....
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Avatar_m_tn
Hi Gimel,
HAPPY NEW YEAR :))))
I was hoping you can give your opinion on my recent lab work. I also posted in the forum.
Hi Dr Lupo.... I have previously posted and was hoping for your opinion.
I have had a TT due to Stage II ThyCa and have had my RAI  four month ago. Since I have struggled with the right dose of thyroxine. I am still feeling extremely tired, hard to concerrntrate, insomnia, dizzy, lightheaded, no energy and sometimes shakey (shaky) and nervous. I feel slow. My Endo wants my TSH to be either close to 0 or undetectable. Currently I am only on 85 per day of thyroxine. Anything above 100 makes me feel terrible... Do I need an increase??
These are my latest test results:
Free T4 24.4 ref 11.0-21.0
Free T3 4.2 ref 3.1-6.0
TSH 0.13 ref 0.5-5.0

Antithyroid peroxidase antibodies 10 ref <35

Thyroglobin <0.2 ref 1.1-35.0
Anti-Tg <1.0 ref 0-4.0

If you could give your opinion that woul be great.
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Avatar_m_tn
Thankyou
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Avatar_m_tn
I don't have much new to offer.  I don't think you need an increase in your T4 med.  I still think you need to talk your doctor into reducing your T4 med and substitute some T3 med, to reduce your Free T4 level and increase your Free T3 level.  Tell him that T3 has been shown to affect TSH levels more than T4, so those changes should achieve what both of you want.  And by the way, I don't really think that the difference between .13 and essentially zero TSH is significant enough to keep increasing your T4 med, in view of your symptoms.  

If you symptoms are not related to the excessive level of T4, then the only other thing that comes to mind is that I would want to see a 24 hour saliva, or urine, cortisol test done, so that you can see the levels at different times of day.
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Avatar_m_tn
Thanks for that... That's what I thought. Here in Austalia, the doctors, endos I have seen quickly dismiss the idea of t3.
They shut it down very quickly even though I have supportive evidence to show them. My Endo keeps telling me that me feeling dizzy, lightheaded and hard to concerrntrate are not thyroid related. I think it is... The rest of my tests are fine.
I have an appointment with a new GP who I found through a chemist someone on the forum suggested and was told she has helped people with combination meds. I'm sooooo hoping she wil find something to change the way things are.
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So I went to the doctor today... A new one and she has prescribed me ARMOUR woohoo. She wrote a letter to my Endo who i see Monday week and seems to know what's going on.
I did want to ask though, I know armour is a t4 and t3 med?? She has still kept me on my dose of thyroxine aswell as armour. Half a grain daily so far. I don't get the dosages yet but I'll ask at the chemist. By adding more t4, will that have side effects of too much??? Also can this keep my TSH down?

Thank you so much... I'm so,excited to start them next week.
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Great news about the new doctor, that will prescribe Armour Thyroid med.   I do have a concern that with your prior increase in T4 to 100 mcg, you seemed to have a reaction.  If it was strictly due to the T4, then your current change to add a half grain of Armour will be adding about 19 mcg of T4, along with about 4 1/2 mcg of T3.  If not discussed already, you might want to mention your prior experience with the higher level of T4, and ask the doctor about reducing it by about the same amount as being added with the Armour.  And yes, it should keep your TSH down.  If the next round of tests show TSH not quite low enough to satisfy the doctor, then I would request an increase  in the Armour and a equivalent decrease in the T4 med.  
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So currently I'm on 100 Monday to Saturday and 50 on a Sunday which works out to be 92 mcg per day. By adding the Armour I would be adding roughly 19 mcg of t4 making that roughly 110 per day and 4 1/2 of t3 per day? Because I can't really handle 100 or slightly above, you suggest I reduce my daily intake of t4 to around 75 per day?? Equalling roughly to 90 mcg of t4 per day??
If i drop my 50 on a Sunday and only take 100 Monday to Saturday that equals to 85 pet day and with the armour added mybt4 would be just under 100..... ??? Hope at made sense lol
Thankyou heaps for helping out. I see her gain in 4-5 weeks but will go n earlier if I need. I see my Endo in a week also and I think I'll just ask tell her I will drop Sundays intake... She will not be happy because the head professor of the clinic where I go hates the idea of armour. He wrote a whole article on it on the net.... Oh well lol
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You might find the conclusions from the study in the link to be interesting to your and your doctor.  Here is what was stated, and the link follows.

"On the basis of these results we recommend the combination of FT3 and TSH tests for monitoring thyroxine replacement and suppression therapy. FT4 appears less useful than FT3 for this purpose even if special reference values values were adopted for each patient group."

For your doctor that doesn't like Armour, this is a link to a study in the New England Journal of Medicine.  Note the results quoted from the study.

http://www.nejm.org/doi/full/10.1056/NEJM199902113400603

"The patients had lower serum free and total thyroxine concentrations and higher serum total triiodothyronine concentrations after treatment with thyroxine plus triiodothyronine than after thyroxine alone, whereas the serum thyrotropin concentrations were similar after both treatments. Among 17 scores on tests of cognitive performance and assessments of mood, 6 were better or closer to normal after treatment with thyroxine plus triiodothyronine. Similarly, among 15 visual-analogue scales used to indicate mood and physical status, the results for 10 were significantly better after treatment with thyroxine plus triiodothyronine."


If you give this info to the doctor, a good followup question is, "So where is the problem with using T3 (Armour in your case) to suppress TSH and also to help improve symptoms?"
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It's such a n exhausting process that patients need to follow up things on their own, what are the doctors for?? I bet not one Endo as had a problem with thyroid cancer, hashis, graves etc and yet still think they know how to treat the condition.
I did read something that states he thyoid gland regulates 25% of our bodies... Thats a big portion. I tried explaining this to my GP and he didn't seem to care... I alo told him Iv been of work for months now and I miss it and want to go back... His response: as soon as you ind our dose of thyoxine you will AND he gave me anti depressants.
I wil look at he site. Thanks again... Are you oing well with your doses??
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Avatar_m_tn
Just a question after speaking to the chemist:
Will my FT4 increase as a result of me adding armour?? Instead of decreasing it??
She said I'm not either hypo or hyper bc I had cancer but to watch my thyroxine increase.
I'm so confused??
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Oh and is 1/2 a grain daily enough for a month before I see my doc again??
I just read some posts and it seems people tend to increase weekly?.....
Sorry to keep asking so many questions but thanks SO MUCH for answering.
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Avatar_m_tn
Yes, your Free T4 would increase as a result of just adding the half grain of Armour.  The half grain contains about 19 mcg of T4, in addition to the 4 1/2 mcg of T3.  So that is why I suggested a possible reduction in your T4 med.  

A weekly increase in Armour would be a bit too fast I think.  But perhaps if your body acclimates well to the change, you could ask the doctor about an increase after a couple of weeks.  
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Avatar_m_tn
So I should miss my dose of 50 on Sunday?? That way if I'm on 100 Monday to Saturday it works put to be 85 of thyroxine daily. If then that's too much I reduce it further :)
Hope this works
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I worry that it may still be too much.  The 4.5 mcg of T3 in the half grain of Armour is approximately the equivalent of 18 mcg of T4.  The half grain of Armour contains approx. 19 mcg of T4.  Since you felt best when taking 100 mcg of T4, then I think the right dosage for T4 would be as follows:

100 mcg of T4 minus (4.5 mcg of T3 in the Armour x 4)  minus 19 mcg of T4 in the Armour = 63 mcg daily average dosage of T4.  I highly recommend that you should discuss this with your doctor, just to be sure you maintain a good relationship, since he is working with you on the Armour.
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Oohhhhh ok I think I get it now...
So ontop of the 1/2 grain Armour daily I should only be taking roughly 63 mcg of t4 a day??
I can't thank you enough for all this. I will call my doctor to tell her all this. I just picked up my Armour and the lady at the chemist didn't understand why I was on both... She said most people normally feel better just on one from who she has seen and only a few on the combo and if I'm feeling hot and shakey (shaky) a d izzy now then additional t4 would not make me feel much better.
Even though I bought them maybe adding cytomel would be better??? Instead of armour??
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Some patients do find it easier to adjust levels of Free T3 and Free T4 by taking separate meds, like T4 and Cytomel.  Especially when making small adjustments.  It is kind of a personal preference decision.  Either one can do the job for you.
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THANK YOU AGAIN AND AGAIN :)

I'll avoid the Armour till I hear back from my doctor and then explain it all again to my Endo.
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Avatar_m_tn
Hi Gimel... Here I am again with another question.

I had an Endo appointment this morning, I told him all my symptoms and he feels I am still being over medicated. I don't think he thought me being dizzy, always tired and foggy is thyroid related but he agreed to reduce my Thyroxine to 75 mcg per day. My Free T4 was high (above range) and because I am 47 kgs he said I am too small to be on such a high dose. I am trying to get a copy.

I think it is strange that I am always feeling foggy and tired on a high dose, I thought that only happens on a high dose. I am still feeling jittery, always hot, heart racing and shakey (shaky). The insomnia is terrible so I take sleeping pills.

He mentioned today to not take my meds before getting bloods done because it can alter the reault.....No one has ever told me this before, I have always taken my pill in the morning and get bloods done about half an hour or an hour later. Can this be the reason I can't get an accurate dose, from the reading being perhaps inaccurate??

I have an appointment with my doctor who prescribed Armour tomorrow so I will ask if it's safe to still take the 1/2 grain now my meds have been reduced. I haven't used them since because I am worried it still may be too much. I will also ask if it's better to just try a T3 med instead of the combo. I suppose I can just take the armour and see how I go.

Any thoughts
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Avatar_m_tn
If you are going to go with the 1/2 grain of Armour, I think the 75 mcg of T4 would still be too much T4.  The amount I calculated was about 63 mcg daily.  To achieve that average amount you could just skip one of your daily doses of T4 each week.  You should make sure to discuss with the doctor tomorrow.  
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Avatar_m_tn
Just doing some extra research for myself... Wow, it's amazing at all the different types of combos. I found and Australian website that even talks about slow release T3 meds which release slowly over 24 hours.

I think now my Endo reduced my Thyroxine to 75, I will ask my doctor if I can start on 1/4 grain of Armour first. I may be wrong with my calculations but if I do this I will be just under 100???

I'm sorry to keep asking you so much but I really want to get this under control. Some days I'm great and other are just a nightmare.  I'm scared/worried to try the 1/2 grain and go hyperion again. My Endo will re check in 3 months.

He kept saying "your TSH needs to be suppressed" and when I said, well previously on a low dose, anything under 80 my TSH rises and you just increase meds again. He didn't really care lol

So on 75 and 1/4 I'm hoping this will keep TSH down and improve symptoms.
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There is available info that says that Free T3 suppresses TSH even more than Free T4.  I think you need more T3, and less T4, so that is why I was suggesting that you try 63 mcg of T4 daily by skipping one of the 75 mcg daily doses and adding 1/2 grain of Armour.  That gives the equivalent of approx. 81 mcg total, which is the level you said seemed best for you.  But that is only my opinion, you and the doctor need to agree.
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I meant to add, that if you want to be really cautious, then start with the 1/4 grain, and take only half of one of the 75 mcg tablets of T4 on one day in the week.  
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Hello,
Hoping I could ask your thoughts on some tests.
I'm kind of on the way to getting better, just can't shake off the tiredness, dizzy and irritable/anxiety feeling. I have never had anxiety before so its more annoying bc I'm not sure if it goes away.

Iron 18.2.               ref 9.0-26.0
Transferrin 2.01    ref 2.10-3.80
Saturation 36        ref 13-51
Ferritin 140.          ref 10-120
Comment: ferritin values above the reference range together with a low level of transferrin may be seen with inflammation, liver disease and also increased iron stores.

Vitamin D 75
Ref vitamin d sufficiency >75
Sub-optimal level 60-75
Vitamin d insufficiency 20-60
Vitamin d deficiency <20
Comment borderline vitamin d level.

I see a new Endo in early march so hope he helps. When you use the public system here you see different endos in the clinic each time you see them so seeing someone private and having one person dealing with my case hopefully helps.

I feel I need an increase as I'm so tired a lot yet need a decrease bc the anxiety and shakes.

Thanks
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Avatar_m_tn
Have a look at the chart in this link and I think you'll see that your first priority should be getting the doctor to diagnose and fix your iron issues.  

http://labtestsonline.org/understanding/analytes/ferritin/tab/test
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Thanks for that.. Can't seem to access it. Can get on lab tests online but there is an error with the link.

Apparently because I have thalasemia my iron seems fine grrrr

Thanks again.
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Hi AGAIN....

I really need some advice. My doctor who prescribed me the Armour no longer works at the clinic. My last appointment with her she had said to stay on 100 Monday to Saturday and 50 on a Sunday to see how I go and do some bloods and the re cap.
Well after 8 weeks on this dose these are my current labs:

TSH 0.12 (0.50-4.00)
FT4 20.6 (10.0-19.9)
FT3 4.4 (3.5-6.5)

I called to make an appointment and was told she is on leave indefinitely :(
My sympoms right now are major anxiety/nervousness. I get so tired I can barely keep my eyes open, dizziness, fast heart beat and can not tolerate heat. I feel over medicated even though my FT4 is not that much out of range??
I keep reading through this forum and notice people add T3... I am confused if this will make me more "hyper"?? As people mention its more potent. Would I still need to reduce my T4 if I add this? I'm asking because they recommended a different doctor who has prescribed Cytomel before but they couldn't tell me much.

I see a new Endo next month so I'm hoping he can sort something out. I really want to get back to work.

Thanks so much
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Avatar_m_tn
Just to be sure I understand, what dosage of  Armour are you taking with the T4?
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I'm not taking any Armour...
My doc suggested I wait a couple more weeks to see if my dose of 100mcg of Thyroxine Monday to Saturday and 50 on Sundays settles and then start on Armour but it hasn't.
FT3 has raised from 4.0 from 6 weeks ago but I still can't manage and now my Armoir doctor has left and the clinic did recommend a doc who has used Cytomel in the past.
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Avatar_m_tn
From those labs you obviously need to reduce your Free T4, and  also need to raise your Free T3.  If it were me I would consider going to, at most,  50 mcg of T4 daily and adding in the Armour that was previously prescribed, starting with half a grain daily, split into two doses for the morning and afternoon.
So I think you need to discuss this with your doctor (whichever one it is for the moment).
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Thanks for that.
I will let the new doctor know.... The Armour comes in capsule form so I won't be able to split it.
This will be a silly question but decreasing my T4 obviously will reduce my T3 doesn't it??
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Avatar_m_tn
The current doctor prefers to use T3 in addition to thyroxine.
I don't want to get on her bad side if she is only comfortable using T3 as its so hard to find a doctor who actually gives you anything else apart from mainstream meds. I will discuss lowering down to 75 a day and maybe adding the smallest amount of T3 to start off with.
Can't wait for this to get better!
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