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Old 01-29-2013, 01:15 PM   #1
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Frustrated and FED UP...

I'm tired of this battle and never feel like I am going to win. Christmas 2011 I was very ill and Christmas was very scaled back. Christmas 2012 was much better and I THOUGHT I was on my way to getting better. My 'one little word' that I chose for 2013 is BETTER. I was determined to to what I could to feel better, make better food choices, get some exercise instead of being a couch potato, be a better wife and mother. And then 2013 arrived and so did another set-back. Started with some major heart palps and anxiety and my hubby suggested i see a cardiologist to I made an appt. Before my appt I realized I was pretty certain all my symptoms were hypo, and they totally peaked right before I started my period in January. Kept my appt with my cardiologist who did an EKG that looked good. Also have an ECHO scheduled as well as 30 day heart monitor, and have had a sleep study done but don't know the results yet. Asked to have my thryoid labs run again and was saddened to find my Reverse T3 had jumped from 33 to 51. I've had issues with RT3 being too high previously and thought it had been brought on by too much stress and thought I could lower it by getting my Free Ts in the top of their ranges. Well, my Free Ts are up, stress has been lowered (not completely gone-can it ever be?) and my RT3 shot up.

I am at a loss as to what to do now. Have not spoken to my dr. since labs have come back, I want to wait until all my other test results are back. However, I think she will want to put me on straight T3 to clear out my RT3. I've been struggling to perform my job at times with the hypo symptoms I am currenltly having...I don't know how I will do my job. (And of course we have some upcoming projects at work that I know are going to be super-stressful.)

However, I can't keep living like this. And I know the answer is just do what I need to do to find health and if I lose my job in the process so be it. But even if we clear the RT3, how do I know what caused it to raise and how do I keep it from happening again. (Adrenal testing came back good last time it was done.) I have been doing WW for the past 3 weeks. The first week I lost 2 pounds and then the 2 weeks after I lost 1 pound. I know I should be happy I am losing but I know I've been sticking to this diet religiously and that realistically a gal at my weight should be losing more at least at the very beginning. I know my metabolism is screwed up, but it is frustrating!

Any words of wisdom or advise? I've included my labs from the beginning....page down to the bottom if you are interested in seeing the most recent.

Thanks!

TSH 11/8/2006 7.1

Started on 75 of Synthroid.

Labs 3/7/2007
TSH: .53 (.40-5.50)
FT4: 1.7 (.8-1.8) 90.00%
FT3: 353 (230-420) 64.74%

Labs 5/22/2007
TSH: 1.59
FT4: 1.5 (.8-1.8) 70.00%
FT3: 332 (230-420) 53.68%

Felt great the weekend of memorial day (5/31/2007).

Florida 10/6-10/13/2007, felt VERY faint.

Labs 10/24/2007
TSH: 2.25
FT4: 1.3 (.8-1.8) 50.00%
FT3: 269 (230-420) 20.53%

10/26/2007 Increase Synthroid from 75 to 88

Labs 12/5/2007
TSH: 2.194
FT4: 1.3 (.61-1.76) 60.00%
FT3: 3.0 (2.3-4.2) 36.84%

12/6/2007 Added 5 of Cytomel, Kept Synthroid at 88

Labs 5/2/2008
TSH: .827 (.350-5.5)
FT4: 1.23 (.61-1.76) 53.91%
FT3: 3.3 (2.3-4.2) 52.63%

5/9/2008 Increase Synthroid from 88 to 100, Cytomel at 5

Labs 9/12/2008
TSH: 1.247 (.450-4.5)
FT4: 1.32 (.61-1.76) 61.74%
FT3: 3.2 (2.3-4.2) 47.37%

Labs 1/28/2010
TSH: .55 (.40-4.5)
FT4: 1.0 (.8-1.8) 20.00%
FT3: 339 (230-420) 57.37%

Labs 11/18/2010
TSH: .56 (.40-4.5)
FT4: 1.1 (.8-1.8) 30.00%
FT3: 3.7 (2.3-4.2) 73.68%

12/10/2010 Increase Synthroid 100 to 112, Increase Cytomel 10 to 15

Labs 01/22/2011
TSH: .34 (.40-4.5)
FT4: 1.1 (.8-1.8) 30.00%
FT3: 3.4 (2.3-4.2) 57.89%

After that Increase Synthroid 112 to 125, Cytomel at 15.

Labs 04/16/2011
TSH: .34 (.40-4.5)
FT4: 1.4 (.8-1.8) 60.00%
FT3: 5.0 (2.3-4.2) 142.10%

Labs 08/18/2011 (anxiety attacks, lightheadedness)
TSH: .03 (.40-4.5)
FT4: 1.3 (.8-1.8) 50%
FT3: 4.6 (2.3-4.2) 121.05%

8/27/2011 Increase Synthroid 125 to 137.5, Decrease Cytomel 15 to 10

Labs 10/3/2011
TSH: .07 (.40-4.5)
FT4: 1.2 (.8-1.8) 40%
FT3: 3.0 (2.3-4.2) 37%

11/2/2011 Increase Synthroid 137.5 to 150, Cytomel kept at 10

Labs 12/12/2011
Hemoglobin A1C: 5.4 (<5.7=decreased risk of diabetes)
TSH: .07 (.40-4.5)
FT4: 1.3 (.8-1.8) 50%
FT3: 3.1 (2.3-4.2) 42%

12/21/2011 Increase Synthroid 150 to 175, Cytomel kept at 10

1/18/2012 – very dizzy week

Labs 01/28/2012
TSH: .02 (.4-4.5) LOW - Out of Range
FT4: 1.5 (.8-1.8) 70%
FT3: 3.8 (2.3-4.2) 78.9%
Reverse T3: 41 (11-32) HIGH

03/24/2012 – not feeling well all week, very dizzy

Labs 3/29/2012
TSH: <0.01 (.4-4.5) LOW - Out of Range
Free T4: 1.6 (.8-1.8) 80%
Free T3: 3.4 (2.3-4.2) 57.9%
Reverse T3: 40 (11-32) HIGH

4/5/2012 - Synthroid kept at 175, Increased Cytomel 10 to 15

Labs 5/22/2012
TSH: <0.01 (.4-4.5) LOW - Out of Range
Free T4: 1.3 (.8-1.8) 50%
Free T3: 3.2 (2.3-4.2) 47.37%
Reverse T3: 39 (11-32) HIGH

6/6/2012 - Increasing Cytomel from 15 to 20, keeping Synthroid at 175.

Labs 7/18/2012
TSH: <0.01 (.4-4.5) LOW - Out of Range
Free T4: 1.3 (.8-1.8) 50%
Free T3: 3.6 (2.3-4.2) 68.42%
Reverse T3: 33 (11-32) HIGH

Increased Synthroid to 188, kept Cytomel at 20.

Labs 9/19/2012
TSH: 0.02 (.4-4.5) LOW - Out of Range
Free T4: 1.3 (.8-1.8) 50%
Free T3: 4.0 (2.3-4.2) 89.47%
Reverse T3: 31 (11-32)

Increased Synthroid to 200, lowered Cytomel to 17.5.

Labs 11/15/2012
TSH: <0.01 (.4-4.5) LOW - Out of Range
Free T4: 1.7 (.8-1.8) 90%
Free T3: 4.2 (2.3-4.2) 100%
Reverse T3: 33 (11-32) HIGH

Decreased Cytomel from 17.5 to 15, kept Synthroid at 200.

Labs 01/17/2013
TSH: <0.01 (.4-4.5) LOW - Out of Range
Free T4: 1.6 (.8-1.8) 80%
Free T3: 4.0 (2.3-4.2) 89.47%
Reverse T3: 51 (11-32) HIGH

 
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Old 01-29-2013, 02:19 PM   #2
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Re: Frustrated and FED UP...

Sorry you are still not feeling well.

I would drop the cytomel, I had used it, felt great initially, and then it made me feel shaky and such. I bet you would feel better without it now. Just my personal experience.

 
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Old 01-31-2013, 02:09 PM   #3
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Re: Frustrated and FED UP...

I had been on Cytomel, slowly increased to 50 mg per day per the advice from the doc. I agree with the previous post, at first I felt good, then slowly I had many symptoms indicating I was not balanced at all. I am truly happy I stopped the Cytomel, I have still continued with the armour thyroid. I will just share this, when I first started with Cytomel, they gave me the generic brand which gave me horrible heart palps. Did some research. That company is under investigation by the FDA for not abiding by certain rules during production. So the doc switched me to the name brand King and I did not have the heart palps. My biggest problem with Cytomel was hair loss. I slowly took less cytomel each day and before you know it, the hair loss stopped completely. Think my body was attempting to tell me I was out of balance. All the best to you.

 
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Old 01-31-2013, 05:56 PM   #4
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Re: Frustrated and FED UP...

yikes, im scared to start cytomel 5mg. my nd started me at 5mg a day. he even said it would be okay to split the doses 2.5 mg in the morning and 2.5 in the afternoon. my last labs:

ft3 3.15 (2.5-3.9)
ft4 0.95 (0.58-1.64)
tsh 1.13 (0.3-3)

currently taking 50 synthroid but he suggested i should cut back on the t4 to 37 mcg instead. don't know what to do and i havent taken a dose yet.

 
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Old 01-31-2013, 07:34 PM   #5
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Re: Frustrated and FED UP...

Reece - I don't feel hyper at all, just hypo. Some of my symptoms are considered hyper symptoms, but I've consistently had them when hypo.

Gabriella - were you put on Cytomel in addition. To Armour? I've been taking the generic Cytomel since 2007 (I do take name brand Synthroid though). And we started because I was not balanced. I didn't seem to convert to well.

Fresnogirl - your FT3 is at 46.4% and your FT4 is at 34.9%. I would have opted for a Synthroid increase, that could help both T3 and T4. Often when T3 is added or increased there is a decline in our T4 labs. If you do start the Cytomel it's prob a good idea to take 2 half doses. And I would not decrease the Synthroid if you are given the choice.

 
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Old 01-31-2013, 08:26 PM   #6
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Re: Frustrated and FED UP...

heckofagal- yes, I increased from 37 mcg to 50 mcg synthroid. I was told the increase would probably bring my free's up. *crossing fingers*

I just dont know if I NEED the t3. I want Synthroid to work and i want to hope i convert well. in december my ft3 was 3.75 (2.5-3.9).

the ONLY reason I would try t3 was try to clear my high reverse t3. its been high since october. my latest reverse t3 is 364 (90-350).

thank you for your advice!

 
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Old 01-31-2013, 09:20 PM   #7
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Re: Frustrated and FED UP...

Heckofagal,
Here are a couple of quotes from research papers: (1) In hypothyroid patients receiving T4 replacement, serum rT3 concentrations varied directly with the dose of T4 between doses of 0.050 and 0.3 mg/day, (2) An elevated or high-normal reverse T3 is shown to currently be the best marker for reduced transport of thyroid hormones and an indication that a person has low cellular thyroid levels despite the fact that standard thyroid tests such as TSH, free T4, and free T3 are normal.

Translation:
the more T4 you take, the higher your RT3 will be.
if your RT3 is too high, your cells will be hypothyroid.

At 150 mcg Synthroid, my RT3 was 51. I was having heart palps too. I reduced to 100 mcg Synthroid plus 10 mcg slow release T3 and my RT3 dropped to 22. My levels are now good with 100 T4 +15 T3.

You do not have to go to straight T3 in order to reduce your RT3. You just have to reduce your T4 intake to something like 100 to 125 mcg. Keep your T3 at 15 - 25 mcg. Once you have reached good levels you have to have a lot of patience because it takes 10-12 weeks for symptoms to subside.

 
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Old 01-31-2013, 10:28 PM   #8
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Re: Frustrated and FED UP...

Quote:
Originally Posted by telus View Post
Heckofagal,
Here are a couple of quotes from research papers: (1) In hypothyroid patients receiving T4 replacement, serum rT3 concentrations varied directly with the dose of T4 between doses of 0.050 and 0.3 mg/day, (2) An elevated or high-normal reverse T3 is shown to currently be the best marker for reduced transport of thyroid hormones and an indication that a person has low cellular thyroid levels despite the fact that standard thyroid tests such as TSH, free T4, and free T3 are normal.

Translation:
the more T4 you take, the higher your RT3 will be.
if your RT3 is too high, your cells will be hypothyroid.

At 150 mcg Synthroid, my RT3 was 51. I was having heart palps too. I reduced to 100 mcg Synthroid plus 10 mcg slow release T3 and my RT3 dropped to 22. My levels are now good with 100 T4 +15 T3.

You do not have to go to straight T3 in order to reduce your RT3. You just have to reduce your T4 intake to something like 100 to 125 mcg. Keep your T3 at 15 - 25 mcg. Once you have reached good levels you have to have a lot of patience because it takes 10-12 weeks for symptoms to subside.
telus,
if i back off on my t4 to 37 mcg of t4 and add the 5 mg of cytomel it should help? my rt3 is high (higher than the range) my adrenals are fine and my other minerals/vitamins are well within range. I think i can tolerate taking some t3? im just nervous.

 
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Old 02-01-2013, 10:30 AM   #9
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Re: Frustrated and FED UP...

Heckofagal - yes, I was taking both cytomel and armour at the same time, not for very long though. Cytomel first, then when ft4 was extremely low I started armour. Now I am only taking armour and think I am slowly starting to see some symptoms disappear. I can see it may take some time.
Fresnogal - What I really was aiming to share was my experience with the generic version of Cytomel. I did well for a while on the King name brand. It seems some people like me do not do well on the generic version. Certainly did not mean to cause you concern regarding Cytomel, as I can see on this board, what works for one person may not for another. (It just may work for you, wouldn't that be good.)

 
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Old 02-01-2013, 10:42 AM   #10
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Re: Frustrated and FED UP...

Telus, why do you suppose I felt so horrible then nov, dec & jan of 2011? I didn't have RT3 tests done before then and my FT4 was barely midrange and that is when I was taking a lower dose...

 
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Old 02-03-2013, 01:35 PM   #11
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Re: Frustrated and FED UP...

Heckofagal Feb 3, 2013

The problem we are dealing with is the reference ranges. The mid-points of the reference ranges shown on your lab report are (in the units of your most recent labs):
FT3 3.25
FT4 1.3
TSH 2.45

The problem is that these reference ranges that doctors use are far too broad - by definition the reference range is the 2.5 percentile to the 97.5 percentile, and also they are for males and females, young and old.

On the other hand, if you look for mid-point values for females under age 60 years, with normal thyroids, the values are:
FT3 2.88
FT4 1.04
TSH 1.41

Now comparing your labs to these mid-points, you can see that your FT3 and FT4 were above mid-point right at the beginning, when you were on 75 mcg T4!

It is impossible to say what dose of T4 was too much and the RT3 started to go too high. Looking for clues, your TSH plunged to .56 when you were on 100 T4 + 5 T3, so that's a clue that dose was enough to completely shut off your thyroid. Another clue is that you started to report anxiety and lightheadedness on 125 + 15.

What to do? How much is enough?
A normal thyroid produces about 90 to 100 mcg of T4 and 6 mcg of T3 per day. If you assume you only absorb 80% of T4 meds, then you need to take 112.5 to 125 mcg to absorb 90-100 mcg. So 125 mcg of T4 should be a complete replacement dose. That kind of jives with your TSH going very low on 112+10 and 125 + 15. But judging from your anxiety symptoms this might have been when RT3 started to build up.

You stayed on 100 + 5 for quite a long period (2008-2011) do you remember how you were feeling then?

Another benchmark to consider is that 3 grains of Armour seems to work for a lot of people. That contains 114 T4 plus 27 T3.

If I had to pick, I would go to 100 T4+15 T3, but I am biased. That is what I am now taking and my labs are above mid-point. I found that 100+5 and 100+10 did not give me enough FT3.

That's about it. Good luck to you.

 
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Old 02-03-2013, 06:02 PM   #12
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Re: Frustrated and FED UP...

Tells - can you tell me where you found the statistics about women under 40? And I believe the reason my TSH plummeted on 100 Synthroid +5 do Cytomel is because adding T3 meds suppresses your TSH. And I believe I did feel well on 100+5 for quite a while, as I stayed off this board and away from the dr. For such a long time, but I don't think that can tell me for sure what my dose should be now. To be honest, I felt better in 2005 before I started thyroid meds so do you think I would just feel better not taking any thyroid meds?

I'm not sure what the answer is. My dr has recommended to stay on my current dose and to start Thyrosol to help with conversion, and to come in to discuss my situation. I will have to try and squeeze her in as I still need to go back to the cardiologist, most likely need to go back to the sleep lab and would like to get in to my gynecologist to have her check all my other hormone levels. Oh and the eye dr as my eyesight has taken a turn for the worse these past 6 months or so as well.

 
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Old 02-04-2013, 04:26 PM   #13
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Re: Frustrated and FED UP...

Heckofagal Feb 4, 2013

Can you tell me where you found the statistics?
I found them in a research paper when I was searching for numbers for men. I cannot post the paper title because it is against the rules of this Board.

And I believe the reason my TSH plummeted on 100 Synthroid +5 do Cytomel is because adding T3 meds suppresses your TSH.
I think 5 mcg T3 is usually too little to move your TSH that low. When I was on 100 T4 +5 T3, my TSH was 2.29.

I believe I did feel well on 100+5 for quite a while, as I stayed off this board and away from the dr. For such a long time, but I don't think that can tell me for sure what my dose should be now.
Maybe not for sure, but I think it gives you big clues and can give you a place to start.

To be honest, I felt better in 2005 before I started thyroid meds so do you think I would just feel better not taking any thyroid meds?
Well, your TSH was 7.1 in 2006, so you had to take something. I do think that you could cut back your dose a lot.

Hecko - looking at your labs again, you got your first test with high RT3 last January, over a year ago! I do not think that your doctor understands that too much RT3 acts against your FT3, because she does not seem to be doing anything to get the RT3 down. It is the high RT3 that is making you feel so hypo. Like I said, I just reduced my T4 dose and my RT3 came down to normal.

This stuff isn't easy. Hope you have a good discussion with your doctor.

 
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Old 02-04-2013, 10:34 PM   #14
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Re: Frustrated and FED UP...

Quote:
Originally Posted by telus View Post
Heckofagal Feb 4, 2013

Can you tell me where you found the statistics?
I found them in a research paper when I was searching for numbers for men. I cannot post the paper title because it is against the rules of this Board.

And I believe the reason my TSH plummeted on 100 Synthroid +5 do Cytomel is because adding T3 meds suppresses your TSH.
I think 5 mcg T3 is usually too little to move your TSH that low. When I was on 100 T4 +5 T3, my TSH was 2.29.

I believe I did feel well on 100+5 for quite a while, as I stayed off this board and away from the dr. For such a long time, but I don't think that can tell me for sure what my dose should be now.
Maybe not for sure, but I think it gives you big clues and can give you a place to start.

To be honest, I felt better in 2005 before I started thyroid meds so do you think I would just feel better not taking any thyroid meds?
Well, your TSH was 7.1 in 2006, so you had to take something. I do think that you could cut back your dose a lot.

Hecko - looking at your labs again, you got your first test with high RT3 last January, over a year ago! I do not think that your doctor understands that too much RT3 acts against your FT3, because she does not seem to be doing anything to get the RT3 down. It is the high RT3 that is making you feel so hypo. Like I said, I just reduced my T4 dose and my RT3 came down to normal.

This stuff isn't easy. Hope you have a good discussion with your doctor.
telus, can you re - read my post ? i posted labs and my recent RT3 in the post as well. for some reason, my t4 supplementation of 50 mcg right now is making me feel better than i did when my RT3 was also high in october and now.

 
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