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Dr. Bob is Robert Hsiung, MD,
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Posted by Phillipa on February 10, 2005, at 16:59:25
In reply to Re: Comments for all who've written since Feb. 5/05 » Phillipa, posted by corafree on February 10, 2005, at 16:51:36
Oh no! Why did you mention the pituitary gland? I had an MRI done that showed a possibity of a small tumor on my pituitary gland. The neurologist said it was nothing, and I left the hospital before the endocrinologists read the films. I left these films at the neurologists yesterday and told him they were supposed to be read by above. I don't think he will forward them though since they feel there is no problem. Fondly, Phillipa PS I have an elevated ANA, which is indicative for autoimmune diseases. I was tested for Lupus, Hasimotos, and Sjournes, as well as some I don't remember. All but the Hashimotos were negative. Fondly, Phillipa
Posted by Troubled1 on February 10, 2005, at 20:39:09
In reply to Anyone had success on Effexor XR? , posted by jp on October 24, 1999, at 14:59:14
Hey all. I was reluctant to get into any more detail yesterday as my post was already incredibly long. I fear that this one will be as well but is important enough to write. I am not an MD but have been told that the thyroid is like the control centre for the body. If it isn't functioning properly, many other things, seemingly unrelated, can go wrong. I was diagnosed as hypothyroid in 1996. In 1995, I was noticing fatigue and just a general feeling of not being myself. I used to have energy to spare. I would jump out of bed in the morning and start vacuuming. I was also a real social butterfly. The change occurred too suddenly for me to be comfortable with. I did not feel stressed out or depressed; just simply really tired. If I rented a movie, I would fall asleep trying to watch it. I went to my GP who tested my TSH and said it was a bit high so had me go back for a different, supposedly more sensitive, test. I was told that it came back okay so the first test must have been wrong. WRONG! After another full year of feeling crappy, my gynecologist ran a full blood panel and, surprise, surprise, I was diagnosed with hypothyroidism and referred to an endocrinologist who I continue to see to date. I have been on Synthroid since that time. My TSH levels fluctuate but have remained in the so-called normal range. It wasn't until this horrible debilitating depression set in that I really started to research hypothyroidism. Everything seemed to fall into place. I discovered that physical problems that I have suffered from and am being treated by various specialists for (IBS, IC, chronic sinusitis, migraines, endometriosis, adult acne, etc.)are all common in those with hypothyroidism. I guess some people do great on Synthroid and the other common meds used to stabilize TSH, T4 levels, however, despite my levels always being within the "normal" range, I have consistently reported feeling fatigued and not quite like I was prior to the condition developing. I began a crusade to find out more. I want to be sure that the primary cause of my problems is being treated properly rather than the symptoms all separately. I came across some interested stuff on the internet re T3 levels. Most doctors do not test T3. When your body is performing as it should, it will take the T4 you get from Synthroid, etc. and convert it into T3. T3 is actually the more powerful hormone and is responsible for many things. Most doctors assume that your body is doing the conversion for you, therefore, they only feel the need to supplement your T4. If your T4 tests say that your TSH is within the normal range, they expect you to feel great. Recent studies, however, have shown that this is not the case with a large percentage of hypothyroid patients. When these patients participated in a blind, controlled study in which they were actually given T3 and T4 for a period of time, and just T4 for the same length of time (not knowing which they were on each time), a huge majority of them reported feeling better when T3 was given as well. The reason I mention this study here is that the study was done to measure mood more than anything else. The participants filled out questionaires after each period of treatment. Those who had T3 & T4 first, reported improved mood during that period and poorer moods when on T4 only. Those who had T4 only first, rated moods as poor during first period and improved during second (T3 added). Unfortunately, a lot of doctors are hesitant to add T3 to T4 as these studies are new, therefore, have not been repeated numerous times yet. This frustrates me as they are not the ones who feel like crap. I have decided to discuss this with my endocrinologist next week and ask him to add T3 to my treatment. If he refuses, I will look for a new doctor who will. There are testimonials on the internet from those whose doctors were open-minded and agreed to try the T3 treatment. These patients report feeling so much better now. It's worth a try. The worst that can happen is that it doesn't make a difference for me. At least I will have tried and will not be wondering if I could feel so much better if only had a doc who was willing to try with me. Hope this info is helpful to those of you who are hypothyroid. Will keep in touch and be here for everyone. Take care.
Karen
Posted by Phillipa on February 10, 2005, at 20:59:03
In reply to More on hypothyroidism, posted by Troubled1 on February 10, 2005, at 20:39:09
Please let me know what you find out. You can Babble me if you like. I started out with a flu-like syndrome and my chest was so tight it took great effort to take a deep breath. This with extreme fatigue. From that my anxiety rose extremely high to panic. Add more xanax and synthroid. Stabalize, and then vertigo that sent me to the emergency room for antivert and 2mg IM of ativan. After this the intolerable fatigue, nightmares, night sweats, and cold spells. I was told this was depression and was given lopressor to prepare my body for l0mg of Paxil. A 3 month period of lying in a hammock or the couch ensued. Finally I came out of it and was able to go back to work. The pdoc said "how did you do it?". What a strange thing to ask I thought. Anyway, about 2yrs later it happened and I've never been able to work since, and the drug parade began. Fondly, Phillipa
Posted by corafree on February 10, 2005, at 22:02:32
In reply to Re: More on hypothyroidism » Troubled1, posted by Phillipa on February 10, 2005, at 20:59:03
Pls both share responses from endos.
Now that I look more closely at a current blood workup form right in from of me here, what he has written is actually, well an asterisk above, and then, not just the word T3, but T3 free
What I wonder is up with that?
I want to write in myself, T3, T4!!!!!!!
I can't believe that STILL after all these years, thyroid isn't researched more closely. My mouth is kind of hanging open.
Please Phillipa, Karen, Troubled, let me know what you may or may not find out. I'm sure many here are interested in this. I am open to babble.
Thanks cf
Posted by corafree on February 10, 2005, at 22:05:56
In reply to More on hypothyroidism, posted by Troubled1 on February 10, 2005, at 20:39:09
I'm sorry, Karen and Troubled1, one and the same. cf
Posted by Phillipa on February 10, 2005, at 22:10:42
In reply to Re: More on hypothyroidism » Phillipa, posted by corafree on February 10, 2005, at 22:02:32
Corafree; What you are looking at is part of a complete thyroid panel profile. It's good that this was done. But, I still say that even if everything checks out fine, as it does with me, that does not explain the abundance of depression/anxiety associated with hypothyroidism. Fondly, Phillipa
Posted by corafree on February 10, 2005, at 22:25:09
In reply to Re: More on hypothyroidism » corafree, posted by Phillipa on February 10, 2005, at 22:10:42
Okay, T3 free, written in. Above TSH (already on form) is testosterone (alphabetical), and above that is thyroxine (T4). That one is not checked. Shouldn't it be? cf
Posted by corafree on February 10, 2005, at 22:30:53
In reply to Re: More on hypothyroidism » Phillipa, posted by corafree on February 10, 2005, at 22:25:09
Now I see there is also, T3 uptake, and Thyroid Cascade Profile, already on form, unchecked. Shall I ask for referral to an endo?! cf
Posted by Phillipa on February 10, 2005, at 23:55:51
In reply to Re: More on hypothyroidism » corafree, posted by corafree on February 10, 2005, at 22:30:53
Tell him you want a complete thyroid panel done. When the results are in,find out what they are. Then if you think it's necessary see an endo. In the meantime, find a good endo {I don't know if you're in a large city or what}ask around for a good ones' name and call and tell them your situation and find out how you can see him. Boy, here I am telling you how to do it, and I don't have the guts to call the neurologist and demand he send my MRI to the endo! Fondly, Phillipa
Posted by Troubled1 on February 11, 2005, at 1:27:48
In reply to Anyone had success on Effexor XR? , posted by jp on October 24, 1999, at 14:59:14
I strongly recommend seeing an Endocrinologist if anything is abnormal re lab results. Most good doctors will refer you w/o you having to ask. There is a reason that Endos exist. They have far more knowledge in that area than GPs. They also deal with all disorders of the endocrine system, not just thyroid. Adrenal insufficiency is another disorder that I stumbled upon while researching pituitary disorders. It has similar symptoms including fatigue, depression, etc. and can be brought on simply by stress. I plan on requesting that my Endo do a full blood panel for other disorders/hormones as well as my regular hypo tests. I've read that some suffering from chronic fatigue symptoms have had success with treatment not only with T3 but also treatment for adrenal exhaustion, and supplementation of any other hormones that may be deficient (progesterone was a common one for women) even prior to menopause. Sometimes you just have to push for what you need at the risk of ticking off your doctor. Any time I have felt ill enough to go to my GP in the past, I have been right. As discussed, I knew there was something wrong and sure enough tests showed hypothyroidism. Years later, I began having severe nausea and vertigo. After complaining several times to GP who acted as though I was a hypochondriac, he referred me to a medical centre who specialized in problems of the inner ear. Sure enough, after being hooked up to electrodes, having water pumped into my ears, being placed into weird positions, etc., my tests came back with a definite difference in the way the right side of my brain and the left were responding. They hypothesized that I likely had a prior ear infection that was untreated and, therefore, caused the damage. Anyway, the bottom line is that it is your life. You are the one suffering, not your GP. After this recent experience, this Social Worker really doesn't give a you know what if my doctors like me as long as they continue to run the tests I need. I'm sure if they had to live in our shoes for even a day, they'd run every bloody test known to modern man on themselves. So, go ahead and push guys and gals. Sometimes you just have to take back control of your lives to get results. We Social Workers are trained to empower our clients. As a result, it's extremely frustrating to have a GP who just wants you to shut up and let him/her make all the decisions re your life/health for you. Do your own research and don't be afraid to discuss it with your GP (tactfully, of course; egos are fragile). Good luck.
Karen
Posted by corafree on February 11, 2005, at 13:58:54
In reply to Re: Thyroid testing, posted by Troubled1 on February 11, 2005, at 1:27:48
Appreciate your encouragement. Before finding so many knowledgeable and giving people on this website, might have given up. best wishes cf
Posted by Phillipa on February 11, 2005, at 16:37:42
In reply to Re: Thyroid testing, posted by Troubled1 on February 11, 2005, at 1:27:48
Oh no! My mother died as a result of Addison's Disease in the l960's at age 48. They thought I had Cushings Disease in my late 20's, but it turned out I just drank a lot of water. With the constant stress I'm experiencing,{move, sell of custom home, no job, my husband no job, loss of 3 beloved pets, doctor changes, about to lose insurance}, I could go on and on, but you get the picture. I have been saying that the reason I don't feel, taste anything{went to Taste Center so I have the papers to prove it} no reaction mentally to anything, that my adrenals are exhausted. Now I'll have to do a search on this. I will also tell the new pdoc on monday, as she has a lot of experience. I just hope she's finally "the one". Fondly, Phillipa
Posted by dancingstar on February 11, 2005, at 18:37:50
In reply to More on hypothyroidism, posted by Troubled1 on February 10, 2005, at 20:39:09
My internist is an integrative medicine doctor and uses Armour thyroid because it supposedly works on both the T3 and T4. I've had great results with it even though pharmacists tend to look at me like I'm nuts when I first go there with my prescriptions. It's not a popular choice these days.
I didn't need thyroid, though, until I had been on Effexor for quite some time. Now that I am off of Effexor, I will need to have my TSH levels checked again to be sure that I don't need to lower the dosage.
You are right, though, thyroid is amazingly important in helping to ward off so many problems, including depression.
Bebe
Posted by Daky on February 11, 2005, at 19:11:58
In reply to Re: More on hypothyroidism » Troubled1, posted by dancingstar on February 11, 2005, at 18:37:50
Jumping in here to share a bit about hypothyroidism and depression/anxiety. It's important to have a doctor who tests thyroid function regularly. If there is a problem a referral to an endocrinologist MIGHT get you the help you need. Often times however, the best place to look is for an "alternative" doctor, like an OD or a natureopath or a MD who is holistically oriented. A couple of good books are The Thyroid Solution by Dr. Arem and What Your Doctor May Not Tell You About Hypothyrodism by Mary Shomon (About.com--thyroid disease forum).
It's complicated and getting a doctor to correctly diagnose it and treat it using T3 can be difficult. Armour is a good option for many but the amount of T3 is too high for some people. Armour was the drug of choice for years before the synthetic T4 meds were developed.Some people do much better on Armour (pigs thyroid hormone) than on the synthetics but others find the amount of T3 in Armour to be too high.
I go to a thyroid guru in the Boston area and am fortunate to have found him but unfortunately, his practice is now closed to new patients. He has helped me tremendously.
Posted by Phillipa on February 11, 2005, at 19:57:35
In reply to Re: More on hypothyroidism, posted by Daky on February 11, 2005, at 19:11:58
Don't mention OD. The "bad" pdoc was one. While when I first saw him nearly 8yrs ago he was holistic oriented he became corrupt when he became a psychiatrist and passed the Boards. The drug companies got him, now he's under investigation for medical fraud, and illegal distribution of controlled substances. I have had my thyroid checked in the last month at least 4-5times due to changing pdocs so much. Fondly, Phillipa
Posted by Phillipa on February 11, 2005, at 20:00:43
In reply to Re: More on hypothyroidism, posted by Daky on February 11, 2005, at 19:11:58
Okay, I'm finally going to tell you his name. He doesn't know who Phillipa is anyway. Michael Kermit Nunn OD in North Carolina. Run a check on the New Bern Sun Journel, Business As Usual, on Feb l. There I feel better! Fondly Phillipa
Posted by winddancer on February 11, 2005, at 20:09:41
In reply to Re: Thyroid testing » Troubled1, posted by Phillipa on February 11, 2005, at 16:37:42
That's the first time I've heard mention the lack of taste symptom! This is what I experience so I only eat because I know I must. It's a sad day when chocolate doesn't taste like anything. I had a feeling it was drug related. Geez, I'll be so glad to get off this stuff. My naturopath is "at the ready" if I need some herbal support for depression or anxiety, as I continue to decrease my dose.
I am having good success with the acupuncture and chinese herb tea helping with my sleep. What a joy ot wake up feeling rested. It's been a long time. I'm also trying out a Nikken sleep system. They claim that it can relieve fibromyalgia and sleep problems. Let me know if you want to know more.
winddancer
Posted by Phillipa on February 11, 2005, at 20:41:46
In reply to Re: Thyroid testing » Phillipa, posted by winddancer on February 11, 2005, at 20:09:41
Did you just say what I thought you did? You have no taste too? This is too bizarre. They at Wake Forrest Hospital Taste Center {only a few in the USA} told me after 8 hrs of testing, that I must have had a virus that affected my smell ie no taste. Well, I can too smell! They told me to first try prednisone starting at 60mg a day and decreasing it over 2 weeks to see if it came back. Supposedly this virus affected the nerves in my nose and they are the only nerves that can regrow. If that didn'lt work then take Theophylline for 4-6mths. That's where I drew the line. This drug is used for difficulty breathing, and causes very bad anxiety. I certainly don't need that! That's my predominant symptom-anxiety. If I interpreted your message correctly, please feel free to BabbleMail me. Fondly, Phillipa
Posted by Troubled1 on February 11, 2005, at 22:31:10
In reply to Anyone had success on Effexor XR? , posted by jp on October 24, 1999, at 14:59:14
During my internet research, Armour Thyroid was mentioned a lot as was the fact that most drs are reluctant to use it since it is an animal product, etc. I did find one article,however, that stated that there is a synthetic T3 available. Doc must be very knowledgeable re proper amt's of T3 and T4 to prescribe. Apparently, if you are given T3, they need to reduce your T4 dosage. It is likely impossible to do with Armour as I'm assuming that both T3 and T4 exist together as one unit. Perhaps that's why some feel they are getting too much T3 on Armour. I dug out my research articles that I will be taking with me to my endo next week. For those who wish to read them, here are the addresses:
www.thyroid.ca/Articles/neweng.html and
http://content.nejm.org/cgi/content/short/340/6/424
Also, check out www.thyroid.org and look under the frequently asked questions section for thyroid hormone treatment. It discusses T3 as well. Good luck.Karen
Posted by Blucky on February 11, 2005, at 22:42:31
In reply to Re: my Effexor experience, posted by woodie on February 10, 2005, at 13:45:30
Getting ready to get off this zombie drug and have read many of the posts on here confirming my fears...this is gonna be hard. I have not heard anyone really say how long the symptoms last though???? I guess people just stop posting once their syptoms are gone?
Posted by winddancer on February 12, 2005, at 1:04:58
In reply to Re: Thyroid testing » winddancer, posted by Phillipa on February 11, 2005, at 20:41:46
Phillipa
It seems that my no taste is related to the tingling that I feel in my mouth and on my tongue since taking effexor. I certainly hope the feeling and taste comes back. It seems like from your post that the drs just want to keep adding drugs to counteract the symptoms of the last drug, instead of finding ways of eliminating the first drug. I really do think we need to be looking to more holistic healers to break into this viscious cycle that western medicine gets us on.winddancer
Posted by dancingstar on February 12, 2005, at 10:37:27
In reply to Re: Armour Thyroid, posted by Troubled1 on February 11, 2005, at 22:31:10
My Harvard-trained, somewhat holistic, integrative medicine/internist began to test my thyroid because I couldn't get my weight to drop from around 150 to my more natural 125-135 and because I was exceedingly sleepy and in severe pain. At the time I was still exercising regularly and taught several classes at gyms (for fun, not profit.)
He has always preferred Armour thyroid, and I have had very good results with it, though I didn't really lose weight nor truly get my energy back until after I stopped taking EffexorXR. Nothing, absolutely nothing, would help me with those problems, and I had no idea what was wrong with me...nor did he as my bloodwork was normal besides the thyroid.
Yep, Armour thyroid is an animal product, but it's been around forever, and with all of the problems associated with the newer drugs, I would rather take the ones that have been on the market for 25 or more years if I have to take any drugs at all. From what I can tell, most of the holistic docs, lean towards Armour, and all I can say is that it works for me, though as with all things, I'm sure it does not work for everyone.
Posted by dancingstar on February 12, 2005, at 10:44:23
In reply to Why worst fears realized, posted by Blucky on February 11, 2005, at 22:42:31
I did it. You might as well expect the best because the reactions seem to vary from person to person. For some people it only takes a week to recover, but from what I hear it's best to cut back slowly and give your body a chance to adjust to the change.
Best of luck to you!
Posted by woodie on February 12, 2005, at 12:07:36
In reply to Why worst fears realized, posted by Blucky on February 11, 2005, at 22:42:31
I am certainly not an expert, but in both my previous attempts at stopping, most of the 'body' symptoms (nausea, dizziness, generally feeling like you're back in the 60's on a bad acid trip) dissipated to next to nil after about two weeks (that was after a veeerrry slow tapering of the dose over a couple months). The bit that destroyed me was the emotional meltdown that happened after most of the physical stuff passed. I didn't realize that a 'rebound depression' was part of the withdrawal. When I started crying and couldn't stop for days, I figured I must really need this drug. Even knowing, I'm not sure I will be able to keep from going back on it. The meltdown is completely debilitating and downright scary.
That's probably not much help...sorry. I am on my third try, having a tougher time with the physical weirdnesses, but coping. I am trying to use some of the supplements and remedies that have been suggested here, and they seem to help. If it would help you to know what may be down the road for you, and the timeline I'm experiencing, I'd be happy to keep you posted.
Currently, I'm taking a little tiny bit of a 37.5 mg tablet (about 1/8th of it) daily. I started out on 75 mg XR about nine weeks ago, so that's how long it's taken so far.
I am so thankful for the information, support and sense of community provided by the people who are part of this site.
Best of luck to you and to everyone taking this journey.
Posted by dancingstar on February 12, 2005, at 12:17:39
In reply to Re: Why worst fears realized » Blucky, posted by woodie on February 12, 2005, at 12:07:36
It just goes to show how different we all are; for me it was and is the physical problems. I didn't know that all of my physical problems were related to Effexor until I stopped taking it and got so sick, which forced me to do all the research.
But I never took the drug for depression. It did cause me to have a bit of it, though.
This won't make you feel much better, but you might find it helpful. If not, I'm sure I can find other links :-) :
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Dr. Bob is Robert Hsiung, MD,
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