As long as your PCP is willing to work with you to try and find a good level for both your FT4 and FT4, then I guess there is not a lot more you could get from an Endo at this point. A lot of members would be happy to have such a PCP.
It seems that you need to increase both your meds slightly, with a target being around midrange for FT4 and the higher end of the range for FT3. This is in accordance with the following direction, "the well-replaced patient’s free T4 will be around the middle of its range or lower, and the FT3 will be high-“normal” or slightly high before the AM dose." This quote came from this link that I use so often. The letter was written by a good thyroid doctor for patients that he consults with from a distance. The letter is sent to the PCP of the patient to help guide treatment. It occurred to me that a copy of this letter for your own PCP might help ease any concerns about your treatment.
At any rate, maybe you should discuss with the doctor getting your prescription increased by about 10 mcg of T4 and 5 mcg of T3, and see how that affects both symptoms and test results.
Is Beverly Hills too far away for you? The reason I asked is that there were a few Top thyroid doctors in Beverly Hills that sounded like they could be prospects instead of suspects. LOL
I think the guy I'm currently seeing was one of the Beverly Hills ones. Some are not covered by my insurance. Some have bad ratings from patients on Yelp. Sigh.
No advice about the meds ? I'm seeing my PCP tomorrow, sure would like to have her write me a new script while I'm there.
Hope all's well with you !
Gimel, after reading some of your posts here, I have to take issue. I mean this not to be a personal attack, but after reading some of that which you have written, I think heeding your advise may be detrimental to some posters.
Firstly, individuals seeking treatment are patients, not customer. I understand the crux of your assertion on the grounds of semantics here, but I think the doctor-patient relationship is not something that should be disregarded. It is not a purely monetary transaction. It automatically creates an antagonistic relationship between doctor and patient, and leads members to believe that "taking 'no' for an answer" is indicative of some kind of weakness. I am 100% behind the notion of patients being their own advocates, and I believe it to be essential. Patients have a right to access their records, their results. They have the right to have input in their treatment. However, overriding the the time and trust vested in practicing medical doctors is inappropriate. Doctors make the very best decisions they can with the information available to them. Simply skipping from one doctor to the next when they refuse to increase dosage is not okay.
I don't think it's appropriate to be placing "symptom treatment" as the all-important factor in determining thyroid hormone dosing. There is good reason why TSH, along with FT3 and FT4 are variables in finding the right course of treatment. These blood tests are gold standards. Would you be able to link to a peer-reviewed study (or preferably, studies) that demonstrate how FT3 levels most closely correlate with hypothyroid symptoms, and how TSH as affected by a "host of variables" as you have noted previously?
Reference ranges and blood tests, for all their flaws, serve an important purpose. There is great danger in prescribing hormone replacement on the basis of symptoms when blood test results do not clearly indicate deficiencies. Most notably, there may be other underlying conditions causing such symptoms. Conditions that are entirely unrelated to thyroid disorders of one variant or another. It would be medically and morally imprudent for a prescribing doctor to write out scripts for T3, T4 or a natural, dissected thyroid hormone when levels are otherwise appropriate, yet symptoms remain. These symptoms may be the result of something else. Furthermore, dosing to excess carries its own risks to heart and bone health. Surely, a complete picture of the patient's health must be taken.
I think this letter that you so often reply to folks on this board with is somewhat misguided. This is a doctor that's consulting from a distance on patients whom he doesn't meet or treat. Nor does he personally order or review lab results. As well all know so well, lab results vary from lab to lab, even within hospitals, even those using the same assays. A familiarity with the results produced by individual labs can only be had by the treating physician, which Dr Lindner is not.
Also, is Dr. Henry Lindner board certified in endocrinology? Because from a quick search of Pennsylvania's medical licensing verification service, I get the impression he is not. If he is, I do apologize. But, I would suggest members who are linking to this article read the rest of Dr. Linder's website, as he espouses some very specific views about medicine and the pharmaceutical industry that are well outside the purview of his background and common medical practices.
If a doctor refuses to do adequate testing, WHO is creating an "antagonistic relationship"? Isn't it the doctor? Asking to have FT3 tested is not exactly of the same ilk as asking for an MRI, which I think is often easier to come by.
"Doctors make the very best decisions they can with the information available to them. Simply skipping from one doctor to the next when they refuse to increase dosage is not okay." What if that information is lacking? What of the doctor who won't test adequately or stubbornly refuses to treat with anything but T4 meds? Most of us here on the forum speak from experience. I had a PCP who damn near killed me...she thought she knew how to treat thyroid. Was I supposed to just keep seeing her?
FT3, FT4 and TSH are NOT a gold standard. TSH can be affected by any disturbances in the hypothalamus/pituitary/thyroid axis, not to mention by meds taken and length of time on meds. Once again from experience...my TSH hovers around 20, but I'm euthyroid.
Reference ranges are flawed for a number of reasons. First, FT3 and FT4 ranges were established using a flawed "normal" population. Many of the normal population were either asymptomatic Hashi's or undiagnosed hypo (but with symptoms). So, a good part of the lower portion of the range is suspect. In addition, many doctors do not understand how ranges should be used. They think everyone should be well everywhere in the range. Ranges merely define the "playing field" in which a doctor can operate without fear of malpractice.
Yes, lab results do vary from lab to lab, which is why we always ask for reference ranges with results. With results and ranges, why can't labs be interpreted from a distance? If labs are the gold standard, if they quantify the patient's symptoms, as you believe, shouldn't anyone be able to interpret them from anywhere?
I don't think a good thyroid doctor has to be an endo. Too many endos only want to treat diabetes and have no interest in thyroid. (I do see an endo, BTW.)
I think you have to bear in mind the posters on the forum. "Textbook cases", people happy with their treatment, do not participate in forums. The people who end up here are people whom doctors and conventional medical practice have failed. The forum environment would be totally useless if we told everyone to "follow your doctor's advice and don't change doctors"
You say, " I am 100% behind the notion of patients being their own advocates...", however, I really do not see the rest of your post supporting that claim.
I live four hours north of you in Visalia and have a "naturopathic woo woo" NP that does armour and she has me on T3 cytomel and T4 Levothroid, 5 mcg/112mcg. I have a sensitivity to pork so I cant do armour, but the T3/T4 synthetic combo just about gave me my life back. I take the 112 mcg as usual before breakfast and then 1/2 the T3 at breakfast sublingual and the other half T3 at 2 or 3 p.m. with a snack. I highly recommend Sonja Fontana, FNP if your willing to make the four hour drive up here. She works with Martin Falappino, DO who is a promoter of treating by symptoms, Free T3 and Free T4. They also diagnosed my chronic Epstein Barr and she refers to our compounding pharmacy for hormone profiles and saliva cortisol. They take most if not all insurances. She loves to work with thyroid issues!!!! She says its her favorite thing to work with. I have gotten more help from her than any endo could ever give. Any help you need I am here....I know its a long drive, but would be worth it. We have a nice little comfort suites downtown Visalia thats only 99 a night and the Sequoia park is 30 mintues away. Let me know and you can contact me at Kimmydee2 at yahoo.com......Good Luck!!!
To Revolution and all,
Dear REV. Gimel knows that I've been dealing with this problem since 2005, and it was probably extant for years earlier. I have an almost non-existant TSH on medication and it was .89 to begin with and went up to 1.5 while my hypo symptoms increased to the point of hospitalization for depression, which went away in 3 days after insisting on T3 being added to the Synthroid prescribed only to try to slow the growth of nodules and NOT (the endo insisted) to cure my non-existant hypothyroidism.I had been on every antidepressant there is, all of which made me sick and did nothing to stop rampant panic attacks that disabled me. No panic attacks since adding T3. I am changing endos with my PCPs blessing because they all go by TSH only and she sees what happens to me when the various endos lower my medication, which is still not quite enough to bring my Frees into optimal range, and still leaves me with exhaustion, weight gain without food indulgence ( 15 lbs. in 3 weeks when the last jerk insisted on lowering meds because of TSH level), hair loss, rash, and continuing respiratory illnesses. My PCP has also seen my labs for cholesterol, eGfr, calcuim, etc return to their historic norms on medication, and my blood pressure return to historic good low levels from 196/98 !! as well as the shrinking of thyroid nodules and an increase in bone density without medication other than thyroid hormones. So she tends to believe me when I insist that TSH is meaningless in my case.
Perhaps you would like to read the information on the website
which I found very helpful, especially the section entitled "why doesn't my endocrinologist know this information" with the assertion that research doctors from major institutions such as Harvard Medical Schooll are very concerned that most endocrinologists are about 17 years behind the most current information in their clinical practices. Part of that has to do with most doctors not having the time or inclination to read medical journals or attend conferences, as well as from interference by medical insurance companies and lobbying by giant pharmaceutical companies.
Until the dominance of the TSH blood test in clinical practice, which started in the 1970's, doctors have been historically successful in diagnosing from symptoms since the late 1880's. While I would not advocate ignoring modern blood tests, especially the Free levels, I think it is cruel and detrimental to patients to ignore obvious symptoms when their blood tests fall out of the Bell curve. My voice was reduced to a low rasp before T4 -T3 therapy, but the endocrinologist ignored this classic symptom because of my low TSH. It resolved rapidly with thyroid medication, even though that medication was not optimal.
Some fun things endos have said to me :
"Well of course you feel better on thyroid medication, EVERYBODY feels better on speed !" (not a person with panic attacks and clinical PTSD, trust me)
"If you keep on with this medication, you will give yourself a heart attack and dissolve your bones, is THAT what you want ?" Bone density improved. Blood tests and a stress test show no heart problems whatsoever, and the return to my formerly extremely high levels of "good cholesterol" preclude heart problems in my PCPs opinion.
Scathing tone "Well I guess I skipped that in medical school ." when presented with two clinical studies presenting a correlation between under-treated hypothyroidism and respiratory problems. Have seen allergists and pulmonary specialist who just scratch their heads as I pass all their tests yet continue to be sick for months at a time, for years.
I could state more, but I'm sure you get the idea. While I'm certain that many patients fall within the Bell curve and have their symptoms resolved in a timely manner using the TSH as a guide, I think you will find many more who do not on this site. I value Gimel very much for his knowledge, although I myself felt much worse on Armour at the same therapeutic dose. Everyone is different in their medical needs with this tricky disease, and all information offered is not to be taken as gospel, but only as more information to be considered within the context of the individuals medical istory and response to therapy.
I wish good health to all, and to Kimmydee 2, what a sweet offer, thanks so much. I'll keep your counsel in my back pocket in case I keep hitting my head against the wall here in L.A. Your doctor sounds excellent. THANKS for all your responses everybody, and Goolarra, I hope you're hanging in there ! Many Blessings.
Well, here we are 11 days after revolution52 enlightened us by pointing out the fallacy of some suggestions to our members, basically because those suggestions are frequently in disagreement with the practices of main stream medical community beliefs. Before I had a chance to respond, goolarra posted a strong rebuttal to a number of the main issues that were raised. So I waited to see if there was any indication of a real desire to engage in a good discussion of these issues, or if it was just another of the fly- by postings that we occasionally see. After 11 days, I guess the answer is clear, which is too bad. I think there is a lot to be learned from presentation of statistically valid information, and discussion about that data. I spend a lot of time searching for statistical data to support statements that I make. I can give numerous links to such supporting data, and I am fully prepared to engage in any serious discussion. From the other side of the argument, we have yet to hear anything other than opinions, reiteration of common medical practice, and questions about the credentials of anyone that disagrees with their positions.
One of the positive things that came from all this was artfemme's post. From that I got a lot of additional, useful reading material such as these two links. The first link questions yet again the accuracy of TSH testing. The second link is titled, "Why Doesn't My Endocrinologist Know All of This?" Both links are very interesting, and relate directly to our many problems with getting adequately diagnosed and treated for hypothyroidism..
Glad you found the links interesting Mel....I posted them separately for the whole forum and no one responded at all. Sometimes it feels like dropping stones down the well, I know, but I always appreciate your input. Thanks, as usual. I've just been jammed and didn't get any updates on this post for a while......you know I'm always up for a good discussion, though I'm not going to be able to participate for a few days. Best to all.
Right on. I agree with you. I've been treated for thyroid disorders since I was 11. I am now 40 years old. I have only ever found most doctors including endo's severely lacking and limited and do not have the time or the desire to actually listen to what we are saying. I've lived in this body my entire life. I know every change it makes. And what that correlates to for me is that nothing about me falls into the normal average range. I have had an excellent doctor up until about 4 years ago when he had a massive stroke and had to retire. It runs in his family. He actually admitted to me that every thing he knew about thyroid disorders was not helping me. He told me to educate myself and come to him with what I thought was valid (real medical research results) not fly by night website info and we would work this thing out. I was literally dying. I couldn't walk, stay awakes, I hurt so bad I couldn't work. I was almost on disability. My ex husband said to me...honey I love you, but we are going to cure you or kill you. And he upped my meds. Two days later I was walking. I went back to my doctor with all I had read and what my husband had done and he was ecstatic. He's been a doctor for 40 years. So he knew he didn't know everything. He was will to give me anything I wanted at this point. He switched me from synthroid which i had always had horrible side effects to Armour. I've been on Armour for 15 years. I will not switch and will get it illegally if I have to. I got pregnant at 39 and had placenta previa and had to go to all kinds of specialist. The first thing those dumb ***** did was try to take Armour from me. They switched me to synthroid... I was laughing at them the whole time telling them they didn't know jack crap about me and they just blew me off like I was stupid. Three days into synthroid I was almost admitted to the hospital they thought I was having a stroke. I told them it was they synthroid and they still didn't want to listen. One endo did listen and decided to switch me to levothyroxine. No better. I was back three days later same problems only now I could not walk. I called my GP and he told stop listening to them. He said go back on Armour there is absolutely nothing about Armour that is going to endanger you any farther. He had been reading and studying after dealing with me for so many years. I went straight home and took a full does of Armour and two days later I was fine.When I went back to the specialist they gave them selves credit for switching me to levothyroxine and curing me. I never told them I didn't take another pill. I was still on Armour and my blood tests were coming back consistent every time. They are the ones that caused the crisis to start with. As soon as they heard I was on Armour they immediate started giving me all the brainwashed info they had been fed about how it's inconsistent and causes variables in blood tsh and all that BS. None of that had to happen to me if those over educated bloated egotist had listen to the me in the first place.(we paid a high price for this education and we are going to use it whether it works or not) I've paid a lot of money for things I later found to be almost useless. You hear a lot about how we should listen to our bodies. It will tells us when something is amiss. Well maybe they should take their own advice. And as far as a gold standard you could call me sweet doctor anytime ask him if I fall into any of those GOLD standards. He would politely laughing at you for being so stupid. I was lucky enough that his long time NP took over for him when he had to go. She is awesome and works with me exactly the way he did. You can call someone a woo woo doctor all you want. Results speak for themselves. So unless you can put your ideas with some real results...don't talk to me about woo woo. Go look in the mirror you trained pet parrot.
I know not all Endo's or Doctor's are created equal. I only mean this towards the ones who thing their education is the only standard. And to reiterate what goolarra said to start with: I'm on here cause I think my free t3 is to low again. Was looking to see if anyone else was having the same issues. So most likely the people on here are like me and do not fall into that beloved GOLD standard. I miss my doctor very much after reading some of these forums.
Dr. Robert Mathis in Santa Barbara, awesome guy and NOT expensive!!!
You can call him briefly on his cell at no extra charge. Otherwise for a 2-hour first visit $250 and after that $70 for 30 minutes ;-)!