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Old 01-03-2014, 09:06 AM   #1
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Please help me understand what's going on

I have had symptoms of hypothyroid most of my life. TSH always came back in normal range, so nothing was done. After 5 years of pleading with my PCP, he put me on .025 Levothyroxine. Within 10 weeks, I dropped 50 pounds with no change in diet, etc. It took 5 more years of pleading to get him to test T4 and T3. They came back in the bottom of the "normal" range, and I really had to fight to get him to up the Synthroid to .050. The biggest change I noticed from the increase was that my lifetime inability to have regular bowel movements abated. I didn't even know that was related to the thyroid! Here are my test results from August 2013 (when he upped the synthroid) and November 2013. Please help me understand what these results mean, and whether I should continue to fight for better thyroid treatment. Thanks in advance.
Aug 2013: (on .025 Synthroid)
Thyroyropin 1.70 Ref Range: 0.10-5.50
Thyroxine.Free 1.0 Ref Range: 0.7-1.6
Triiodothyronine.Free 2.5 Ref Range: 2.3-4.2

Nov 2013 (on .050 Synthroid)
Thyroyropin .043 Ref Range: 0.10-5.50
Thyroxine.Free .09 Ref Range: 0.7-1.6

There was no Nov testing for the Triiodothyronine.Free

I still suffer nearly every symptom of Hypothyroid and am being treated like a hypochrondriac by my Dr.s

Last edited by ifthespiritmovesme; 01-03-2014 at 09:07 AM.. Reason: more info
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Old 01-03-2014, 09:15 AM   #2
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You definitely need better thyroid treatment. Start by getting a better doctor. You should never have to "beg" for treatment or be treated like a hypochondriac for what is a fairly common problem for women.
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Old 01-03-2014, 09:23 AM   #3
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Thank you Gina! Tears in my eyes....
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Old 01-03-2014, 09:32 AM   #4
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Oh Honey, please don't feel like you are alone either. If you read this board for a while you will see good thyroid treatment is the exception rather than the rule.

Many of us here have found good doctors and are managing our thyroid condition, but it isn't usually easy or cheap.

Where do you live? Let's see if you can find a doctor already known to treat thyroid properly. Your next step then will be to read up on all things thyroid so you know what you are up against and how to tell if you are getting good treatment.
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Old 01-03-2014, 09:38 AM   #5
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Thanks again Gina. I have been doing so much research and I do know I have a problem. What it is, I'm not sure. I live in southern MD - Solomon's Island area. Unfortunately, I receive medical care from the VA (disabled vet) and have to get special authorization from them to see a local doc. I am going to send a letter to them requesting that, but I do need to know of a good Dr. to see, and s/he needs to be willing to accept payment from the VA. ANY help is so appreciated....
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Old 01-03-2014, 09:51 AM   #6
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Hmmmm. I am in CA and know nothing about the VA (except they don't seem to take care of our vets very well) so I am no help there. Maybe someone else here will know more.

There are labs where you can order your own thyroid tests. Would it help your case to get a private doctor if you had labs that showed you have a problem that the VA doctor wasn't dealing with? There is a book and a website called Stop the Thyroid madness that has information on the testing.

Thank you for your service.
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Old 01-03-2014, 09:59 AM   #7
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Yes, in my letter to them, I am sending a LOT of information that proves inadequate treatment, and a lack of concern (and much condescension by the Endo. I was referred to - who refused to even see me, saying TSH and T4 were fine...) What an A**!!
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Old 01-03-2014, 10:56 AM   #8
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I used to work with the military, and I can guarantee that you won't receive adequate thyroid treatment from the VA.

A good friend of mine, the wife of an Army Colonel, has been hypothyroid for many years. At the Army hospital, they refuse to test T3 and tell her that they will not supplement T3 at all. It's against their 'rules.'

Eventually, she went to my endo group and pays out of pocket for treatment because she needs T3 (Cytomel).

Keep in mind that you don't need to be checked that often, so paying out of pocket for a good thyroid doctor is often manageable.
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Old 01-03-2014, 11:58 AM   #9
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Thanks, Leo....
I have a friend on Armour Thyroid....Maybe I can see her Dr.
I just don't know what my problems truly are. I am Hypo-thermic with low BP as well. Cortisol is "normal" according to my PCP. I just read an article about low body temp and how destructive it is. I now need a nap....gads this is all too much for me to deal with....
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Old 01-03-2014, 12:03 PM   #10
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spirit-

Unusual fatigue is a sign of being under medicated, so you probably need a dosage increase.

I wouldn't worry about low body temp. Mine has remained low, and all my doctors say that it varies by individual, so unless the doctor is concerned (because it's unnaturally low), don't worry about it. It can also be due to your need for more thyroid hormones.

I hope you find a good doctor who treats you appropriately.
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Old 01-03-2014, 12:11 PM   #11
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Yeah, Leo, I know I'm undermedicated. Doc. doesn't agree. Even 60 mg. Ritalin per day can't keep me from needing my naps! Wish I could MAKE them read all the articles I've read and continue to find on hypothyroid under-treatment.
Thanks for your help!
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Old 01-03-2014, 12:18 PM   #12
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Just an aside....saw my shrink yesterday and my BP was high. He noted the unusual occurrence and asked why I thought it was high. (the nurse had just told me the endo refused to see me because my tests were normal so I don't have a problem) I told him I am PI**ed!!! about my mistreatment for hypo. He will prescribe T3 for me - tells me shrinks and endos see hypothyroid very differently. I just don't know if I should take the T3 or not. So much conflicting advice concerning that and iodine and selenium....Even if I didn't have such mush for a brain, I think I'd still be confused... What do my test results say to you?
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Old 01-03-2014, 02:30 PM   #13
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I think you need more tests before you can see what is going on.

Is your psych wiling to do the tests, or just rx the T3? T3 can be dangerous if it isn't what you need.

I have heard of MANY women being diagnosed with depression that really have a thyroid problem. Maybe he knows that. I think its a good sign since you are so limited in your choice of doctors, but be careful.
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Old 01-03-2014, 02:36 PM   #14
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OK--This is my take on this, based on my own experience.

When my T3 tanked, my major symptom was crushing fatigue--2-hour naps to just get through to bedtime. T3 supplementation saved my life! So if this doctor is willing to give you T3, based on your labs, I'd take it in your situation.

Please IGNORE iodine. If you need T3, it's possible that you're having some conversion problems which is characteristic of Hashimoto's (7 of 10 hypothyroid folks have Hashi's). It's notoriously difficult to diagnose via bloodwork--my own was confirmed when I had a biopsy of one of my nodules. So always consider that you may have Hashi's.

The point is that if you have Hashi's, any additional iodine can be harmful.

In fact, the whole idea of iodine is based on the thyroid's need for it, BUT lack of iodine as a problem is now mainly in third-world countries because of all the iodine added to US food products. There hasn't been a case of hypo caused by iodine deprivation in the US since the very early 20th century.
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Old 01-03-2014, 02:42 PM   #15
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Gina-
Our posts may have crossed, but I want to respond to your comment that T3 can be dangerous 'if it's not what you need.' That's absolutely true, BUT that happens most of the time when people self-medicate (I've known of women who buy it online,) I read of a case where a 28-year-old woman gave herself a heart attack by taking T3, but she was self-medicating.

There was a scandal at our community hospital several years ago because several nurses were stealing T3 because they believed it would help them lose weight. The cardiac victim was doing something similar.

Almost every doctor I know is very cautious about prescribing T3 because they know how powerful that hormone is.

I don't think the OP should worry if she trusts this doctor.
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Old 01-03-2014, 03:07 PM   #16
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Gina-
Our posts may have crossed, but I want to respond to your comment that T3 can be dangerous 'if it's not what you need.' That's absolutely true, BUT that happens most of the time when people self-medicate (I've known of women who buy it online,) I read of a case where a 28-year-old woman gave herself a heart attack by taking T3, but she was self-medicating.

There was a scandal at our community hospital several years ago because several nurses were stealing T3 because they believed it would help them lose weight. The cardiac victim was doing something similar.

Almost every doctor I know is very cautious about prescribing T3 because they know how powerful that hormone is.

I don't think the OP should worry if she trusts this doctor.
I think you are probably right.

I have heard of people "doctor-shopping" until they find one that will prescribe for them, but I think it is unlikely any of those doctors would be working for the VA.
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Old 01-03-2014, 03:52 PM   #17
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Gina and Leo -
I so appreciate your support!
Actually, my shrink was the one who got me tested for T4 & T3, when my PCP said the VA wouldn't let him do anything but the TSH. He has done more for my physical troubles than my PCP. He is one of the best physicians in the US - we vets are VERY lucky to have him! His name is Richard B.Rosse. He literally saved my life - came into my life at a very low point.
I will discuss again with him taking T3. I've learned some about dosing, and it's short half-life, etc. I trust him completely, and he does listen to me! He also knows I won't hesitate to call him if I have any questions or adverse reactions to anything. He actually gets on the phone with me if I need him. How great is that?!
Between now and my next appt. with him I'll read more on T3, etc.
Meanwhile, I am still writing a letter to the DC VA Hospital Director, and requesting treatment locally, and blasting a hole in the ego of the Endo who refused to see me at all.
This was his reason:

RECOMMENDATIONS:
Hypothyroidism:
- Pt on adequate thyroid replacement given her TFTs.
- TSH and FT4 are better markers of thyroid function as compared to FT3. Over
replacement increases risk of worsening osteoporosis as well as arrhythmias
(afib etc.).
- Continue current dose of LT4. No other intervention needed at this time. Pt
can continue to f/u with PCP.

Thanks again for helping me along!!
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Old 01-03-2014, 04:32 PM   #18
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spirit-

Cherish this shrink! He seems like a wonderful doctor. And keep in mind that any MD can treat your hypothyroidism. There are many women I know who use their primary doctor or their GYN--or shrink--simply because they've had such terrible experiences with endos.

I happen to have a great endo, but my sister (also hypothyroid, AND a medical secretary who can usually find the best doctors) has had terrible experiences with many endos. Her primary doctor is the one she uses for her thyroid.

That VA endo seems to be a typical dork.
Yes, the TSH and T4 are indicators BUT if the patient begins having conversion problems, you only know that by checking the T3. And the T3 is the most vital hormone for regulating the body.

However, the belief that T4 always converts to T3 is so prevalent in the medical community that some insurances won't pay for T3 testing at all. I find it incredible.

Also, it's not 'overmedication' but simply being hypothyroid than tends to cause bone loss. That's why my endo does regular bone scans (since I'm 72) to check. I've been hypo for more than 10 years, and while I have some bone loss (age related), I'm not even close to osteoporosis, so it's not inevitable.

This VA endo seems to be one of the 'loser endos,' and you're best staying away from him!
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Old 01-03-2014, 05:27 PM   #19
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I agree Leo. I have already been diagnosed with osteoporosis, unfortunately. My PCP tried me on Alendronate Sodium (once weekly) but I couldn't tolerate it. Now taking nothing for it. I believe most of my problems will disappear with a properly functioning thyroid. (maybe not that, though) I am on so many meds that can't be taken within so long of each other, etc. that I have a hard time getting my calcium in. I know that I'll have to be more conscientious about meds. if I go on T3, since I believe it needs to be taken more than once per day. My phone is so full of alarms/reminders that it is annoying, but Ill do whatever I need to do. Thank you so much for all your great info. and help. I get overwhelmed with so much information and conflicting opinions about treatment. I'll share all my info. with Dr. Rosse and let him decide what we need to do. Meanwhile, I'll just channel Buddha when I sometimes get frustrated and forget all that I have to be grateful for. Good thing - just reduced the amount of Cymbalta I've been taking by half! My pain is from my thyroid, not fibromyalgia - of this,I am sure....
Thanks again...
Christine
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Old 01-03-2014, 06:05 PM   #20
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I agree Leo. I have already been diagnosed with osteoporosis, unfortunately. My PCP tried me on Alendronate Sodium (once weekly) but I couldn't tolerate it. Now taking nothing for it. I believe most of my problems will disappear with a properly functioning thyroid. (maybe not that, though) I am on so many meds that can't be taken within so long of each other, etc. that I have a hard time getting my calcium in. I know that I'll have to be more conscientious about meds. if I go on T3, since I believe it needs to be taken more than once per day. My phone is so full of alarms/reminders that it is annoying, but Ill do whatever I need to do. Thank you so much for all your great info. and help. I get overwhelmed with so much information and conflicting opinions about treatment. I'll share all my info. with Dr. Rosse and let him decide what we need to do. Meanwhile, I'll just channel Buddha when I sometimes get frustrated and forget all that I have to be grateful for. Good thing - just reduced the amount of Cymbalta I've been taking by half! My pain is from my thyroid, not fibromyalgia - of this,I am sure....
Thanks again...
Christine
I take time-release, compounded T3. I only have to take it once and it lasts all day. It costs a little more and you have to go to a special pharmacy, but it is worth it to me.
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Old 01-03-2014, 06:13 PM   #21
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Gina - great to know that! thanks! Not sure what the VA stocks, but will surely ask if I can get this type. I see Dr. Rosse again in 6 weeks or so. Hope I will have good news to post at that time. Meanwhile, I am learning, learning.
Thanks ever so much!
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Old 01-03-2014, 06:15 PM   #22
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BTW....I uploaded my pic, but it's in the gallery. how do I get it on my profile area when I post?
Thanks..
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