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Old 09-24-2009, 02:19 PM   #1
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Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

Hi all,

I'm new to this forum and will describe my thyroid odyssey as succinctly as I can.

I was diagnosed with Hashimoto's about 2 years ago. My TSH has always been "normal" and was 2.1 (range .350 - 5.50) at the time of diagnosis, but I was placed on .25 mcg Synthroid because of symptoms (unexplained weight gain, inability to lose weight, puffy face & eyes, fatigue, goiter, difficulty swallowing, ridiculously heavy and painful periods, digestive issues, etc., etc.) and antibodies: TPO = 379 (range 0-34) and Tg = 59 (range 0-40).

It worked well for a while, but symptoms eventually returned. Endo (very reluctantly) increased Synthroid to .50 mcg and told me to come back in 9 months. During 6 months on the .50 dose, symptoms got progressively worse. I begged for an "early" endo appt. At that time, bloodwork was as follows:

TSH = 1.33 (range .40-4.50)
Free T3 = 292 (range 230-420)
Free T4 = 1.15 (range .8-1.8)
TPO AB = 566 (range 0-35)
Tg AB = > 3000 (range 0-20)

Endo told me there was nothing he could do because I was "normal," said he didn't believe I even have Hashimoto's, suggested that I needed antidepressants, that I should try a gluten-free diet (I tested negative for Celiac's), etc., etc.

I fired him.

Through Mary Shomon's Top Doc list, I found a new doctor who, fortunately for me, discovered my severe Iron, Vitamin D, and Vitamin B12 deficiencies (for which I now take supplements) and, I'm convinced, saved my life by prescribing Cytomel (5mcg twice a day).

That was almost six months ago, and I initially responded very well to the Cytomel: had more energy, face thinned out, periods returned to normal, lost a few pounds effortlessly. However, that reprieve was short-lived, and we've been gradually increasing medication. I am now on .75 Synthroid and 25mcg Cytomel (sustained release from a compounding pharmacy). Most recent bloodwork showed:

TSH = 1.26 (range .40-4.50)
Free T3 = 339 (57% of 230-420 range)
Free T4 = 1.0 (20% of .8-1.8 range)

Trouble is, my "usual" symptoms persist and my goiter has returned with a vengeance. A few months ago, I had to move away from my "life-saving" doctor, so I have been working with her long-distance and can't see her in person and thus can't have her take a look at the enlarged thyroid; I'm hoping to find a doctor (one who treats symptoms rather than just looking at lab results) locally. For now, I'm having bloodwork done again next week and will consult again with my long-distance doctor.

Meanwhile, I'm looking for your experiences/advice regarding balancing T4 and T3 meds. From what I've read, Cytomel is very potent and I seem to be on a rather high dose without it having much of an effect. I know many people have some hyper symptoms (heart palps, anxiety, trouble sleeping, etc.) as they adjust to Cytomel, but I have never had any of those. Based on the way I feel, I suspect I could tolerate a significant increase with no "hyper" effects, but the Cytomel dosage already seems so high that I wonder if something like Thyroid Hormone Resistance (at the cellular level) is at work here. From what I understand, there's no way to test for that and the only option is continue increasing meds and remain vigilant for hyper symptoms. My reverse T3 has been checked, and that's not a problem.

Any thoughts/suggestions would be most appreciated.

E.

 
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Old 09-24-2009, 04:58 PM   #2
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

I would guess you have either adrenal fatigue or are not high enough on your meds yet. Everyone has to find their own level and what would be high for one would not necessarily be high for you. The fact that the meds work for a while and then stop is indicitive of not getting your levels up high enough to shut down your thyroid and stop the antibody attacks. Since you are coming up on the T3 but not the T4 you might try to raise your synthroid (or switch over to natural thyroid hormones that have them both)

Adrenal fatigue is very common with people who have been undertreated or on T4 only meds for a long time. If this is going on you won't feel much better no matter how high your raise your levels. A saliva cortisol test will tell you what your adrenals are producing. Another thing to check is a reverse T3 to see what your T3 to RT3 ratio is. RT3 can happen when there is adrenal fatigue, high cortisol, or vitamin and mineral deficiencies and T4 converts to RT3 instead of T3 and this binds to the T3 receptors and keeps you hypo.

T3 resistance is very rare and adrenal fatigue is far more common. Not getting the hormones up to an optimal level is very, very common.

 
Old 09-24-2009, 07:18 PM   #3
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

There are tests for thyroid hormone resistance. There's a protocol that's followed in order to come up with the diagnosis but your current labs don't support that diagnosis and it really wouldn't be worth putting the money and effort into a lost cause.

I think javelina has provided some very sound advice that would be much more worth your while pursuing.

 
Old 09-24-2009, 08:38 PM   #4
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

javelina--

Thanks so much; it's so nice to get such clear information!

I've had Reverse T3 tested before and another test is part of the order for next week's labs. I will also check into the saliva cortisol test; it sounds familiar, and I know I discussed it once before with my Dr. but can't remember why we decided not to pursue it at that time.

Again, much thanks for your help.

 
Old 09-24-2009, 08:54 PM   #5
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

Quote:
Originally Posted by accessn12 View Post
There are tests for thyroid hormone resistance. There's a protocol that's followed in order to come up with the diagnosis but your current labs don't support that diagnosis and it really wouldn't be worth putting the money and effort into a lost cause.

I think javelina has provided some very sound advice that would be much more worth your while pursuing.
Thanks so much for responding. I'm not sure where I read about THR, and perhaps I misunderstood. There's an awful lot of information out there, and I'm never sure what to trust, especially when there are contradictions. I will follow javelina's advice.

 
Old 09-09-2011, 04:51 PM   #6
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

It appears this tread is a couple of years old. I was diagnosed with thyroid hormone resistance several years ago after being over medicated for several years and sick all the time - hyper symptoms that worsened over time, chronic infections, and anxiety. My mistake was going to an internist who kept my blood numbers down the middle. I found an endocrinologist and began to improve when she diagnosed THR and now closely works with me. As I have gotten older I have become extremely sensitive to the thyroid drugs and even 1 mcg increase makes me real sick. Is this normal? Will my body slowly adjust to the increase, sometimes I think I am more intolerant. Any suggestions would be appreciated.

 
Old 09-09-2011, 05:19 PM   #7
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

Who is your Endo in Chattanooga? I tried three there and two in other cities. They were unable to handle my care. I also still drive back to my IM for care.

Natalie Johnson who work with Jeffrey Jump in an integrative medicine practice. If you are looking for a new IM I can vouch for Dr. Johnson. Also I have never had to wait longer than 15 minutes to see my doctor! They have a firm policy against double booking.

Thyroid hormone resistance and a sensitivity to thyroid hormones are slightly different beasts. THR is where you need more thyroid hormone than normally would be used to get you into normal or optimal range.

I have mild THR according to my body weight and age I should only need 150 mcgs of T4. Well I need 175 mcg daily and sometimes have to add on a grain of Armour as well.

I have seen and experienced a lot of thyroid hormone sensitivity. In many cases there is adrenal dysfunction causing the issue. Adrenal health and function are essential for maintaining thyroid hormone balance and conversion rate.

What are your FT3 and FT4 levels and ranges? Where are they in normal range? What is the deviation between the two? What are your symptoms?

With out some actual numbers and ranges I can not give you more specific opinionated advice.

I don't know if this helps, but I got your message.
Sincerely,
MG
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Old 09-10-2011, 05:32 AM   #8
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

I also tried several endos in Chattanooga, some I wouldn't go back to if their treatment was free. I was referred to Dianne Roland and have been seeing her for more than 10 years. She has patiently worked with me and says my blood levels are half the picture, how I feel being the other half.

07/06/11 TSH 12.45, FT3 274, FT4 0.95.
01/18/11 TSH 6.56, FT3 201, FT4 0.95
07/03/10 TSH 11.13, FT3 279, FT4 1.13

I have felt really good the last two years, work fulltime and exercise daily. I am now 57 but through my 40s was sick constantly. I saw an internist who kept my blood levels down the middle. I had constant chronic sinus infections and was treated for that, even going to Vanderbilt for several years and many sinus surgeries. Hyper symptoms seemed to slowly worsen until it was obvious something was going on with the thyroid med. That's when I saw Dr. Roland and she began to adjust the dosages. I began to do better and the sinus problems decreased.

Now a dosage increase gives me headache, nausea, dizziness, diarrhea, tachycardia, aches. Six weeks ago she changed one of my amounts to compounded and one week later I got these symptoms and the next day a sinus infection. She gave me an alternate prescription, just slightly lower, so I have been taking that. I now feel too low with constipation, aches, and very low energy.

I will see Dr. Roland next Tuesday but I know I need a slight increase and a few days later will get sick from it. She says some people who have taken thyroid meds for many years develop sensitivity as they get older, I feel more like it's intolerance.

Do others develop a sensitivity to thyroid meds like I have? A lesser increase amount makes me sicker every time. Would really like any suggestions or ideas.

 
Old 09-17-2011, 10:32 AM   #9
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

I am real interested in your experience with thyroid hormone sensitivity. I have felt for several years I have that or intolerance, something that causes an increase in dosage to make me real sick. I saw my endo last week and mentioned adrenal fatigue. She says it is not medically recognized but did agree to a blood cortisol a.m. test and said that should show a lot about what's going on with my adrenals.

 
Old 02-17-2012, 04:04 PM   #10
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

A lot has happened since my last post. I found an integrative doc who agreed I have a T4 to T3 conversion problem which explains why an increase in Synthroid makes me sick, my T4 was in the high range, T3 borderline to low, and TSH stayed high. He decreased Synthroid to 100/day and began to add Cytomel 5 mcg every few weeks. I dropped hypo like a lead balloon. I'm now up to 15 mcg of Cytomel and all my levels are mid range but I feel terrible with hypo symptoms. He says the levels are where they should be and come back in three months. My DHEA is high from a supplement so am hoping stopping that will help some.

I have a chronic sinus infection and my frustrated ENT wants to adjust the medication some himself. I have an appt with another integrative group in August but five months is a long time to wait. Any suggestions?

 
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Old 02-23-2012, 08:33 AM   #11
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

What exactly are your results?

Mid range may not be your optimal point. Mine is as close to 80% in both T4 and T3 levels as I can get. Given your symptoms and the fact you are mid range, I would try to reason with your current md for a boost to 112.5 mcg of T4 and 17.5 cytomel. This is just a small change and may help you. Argue that you are not hyperT, but still feel hypoT. Is there any way for you to do a trial run at a slightly higher dose with a blood retest in 4-6 weeks? I wish I could help more. My Current MD listens to me and my symptoms. As long as my blood work is in normal range she is willing to play with dosage changes. I hope that you can find a similar relationship with your MD OR A NEW ONE that will work with you.

Sincerely,
MG
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Old 02-23-2012, 04:39 PM   #12
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

TSH 0.75 (0.45-4.50)
T4, free 1.38 (0.82-1.77)
T3 free 3.6 (2.0-4.4)

My labs look better than they have all the years I saw an endo with T4 high, TSH high, and T3 borderline to low, but I actually felt better than I do now with these miserable hypo symptoms. I called the integrative doc office and left a message, the nurse called and said she would talk to the doc and call back today. No body called. I have an appt in August with the integrative group at Erlanger. My ENT is so frustrated he says he'll work with me with labs and slight adjustments until then.

When my T4 was high an increase in Synthroid made me so sick with symptoms of feeling overdosed that I'm now afraid to try it. I have a bottle of 1 mcg compounded and plan to take that a few days to convince myself I can stand an increase. Being afraid is getting old.

Have you tried Armour? I have been advised T1 and T2 are also important and of course not in the synthetic meds and can make us feel hypo without them. Thanks for your input, it's reassuring to know there are others with the same thyroid problems I've had for so many years.

 
Old 02-27-2012, 10:52 PM   #13
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Re: Thyroid Hormone Resistance? Proper Synthroid/Cytomel Ratio?

I went back to the integrative doc I've been seeing for several months. Three months ago he decreased the Synthroid from 132/day to 100 and slowly began to add Cytomel. Within two weeks I was hypo and miserable and have been ever since. When I questioned him today about it he got mad, closed my file, and left the room. I asked that he come back in the room but he wouldn't. He wants me to go back to 132/day to see if the symptoms resolve. I can't tolerate an increase like that, it will put me in the ER. I can't tolerate any increase in Synthroid. It gives me headache, nausea/vomiting, diarrhea, tachycardia, and does not resolve the longer I take it. I asked for Armour but he wouldn't. I'm going to have to go back to the endo who kept me hypo for 11 years with Synthroid only and see if she'll put me on Armour. Now I am really afraid without a doctor who knows what to do to get me straightened out.

 
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