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.

[TTandnowhyper]

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!

[TTandnowhyper]

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??

[gimel]

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).

[TTandnowhyper]

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.

[gimel]

Just to be sure I understand, what dosage of  Armour are you taking with the T4?

[TTandnowhyper]

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

[TTandnowhyper]

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.

[gimel]

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

[TTandnowhyper]

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

[gimel]

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.  

[gimel]

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.

[TTandnowhyper]

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.

[gimel]

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.  

[TTandnowhyper]

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. 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

[TTandnowhyper]

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.

[gimel]

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.

[TTandnowhyper]

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 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??

[gimel]

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.

[TTandnowhyper]

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

[gimel]

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.  

[TTandnowhyper]

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.

[TTandnowhyper]

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??

[TTandnowhyper]

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??

[gimel]

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?"