Has anyone ever heard of secondary hypothroidism? Every time I go up on my meds my TSH drops. Of course, the doctors want me to lower my meds but I told them no. As most of you all know I'm pregnant and I'm sort of dosing my self. I'm currently on 125 mcg of synthroid and I added 5 mcg of cytomel. My docs don't want me to take cytomel but they won't help. I will see a new doctor next week. My recent labs are:
I'm still very tired, my thyroid feels like its burning. I will add that the synthroid has helped me feel a lot better, but obviously not complete.
I was reading about secondary hypothyroidism. It said that it causes the pituitary gland does not work which would cause you to have a low TSH and low free's. my current docs do not care about how I feel at all. I'm hoping this new doctor will help.
Your TSH drops when you go up on meds, because your serum Free T4 and Free T3 go up when you increase your meds. It is not secondary hypothyroidism. It is just the reaction of the hypothalamus/pituitary to increasing levels of thyroid hormone.
Many hypo patients find that in order to relieve symptoms, they must raise their Free T3 into the upper third of its range and Free T4 to around the middle of its range. When that is occurring, the TSH is often suppressed below its range and causes doctors who don't understand to want to reduce meds on the mistaken assumption that suppressed TSH means you are hyper. In actuality you are hyper only if having hyper symptoms due to excessive levels of Free T3 and Free T4, which you don't have. You are right to resist reducing your meds.
Why do they think that? Why is this so complicated? Where do they get this info from? I'm totally afraid because I get so confused. They say your hyper, then I come here and you all say your hypo. I feel like you all say but I can't pay a doctor to listen to me. It so discouraging. I'm worried about the baby. I feel better but still like crap. I'm medicating myself which scares me. I don't have anymore cytomel after this refill. Any suggestions when I see doctor O?
Doctors mistakenly think that about TSH because of what they were taught in Med School, during the relatively brief time they study thyroid issues. They are taught that TSH is the most sensitive test for diagnosing thyroid. I don't have a clue why students don't ask for evidence that TSH correlates with the actual thyroid hormones, or with symptoms which are the most important concern. If that question was were asked, the teacher could not show such evidence.
I have done extensive searching for any evidence that supports the "Immaculate TSH Belief" as some call it. The very best correlation between TSH and FT4 and FT3 is shown in the following link. If you enlarge it and look closely your will see just how tenuous the correlation is for TSH to FT4, and even worse for FT3. For example, assume a TSH of 1.0 and try to predict what the FT4 would be. The corresponding FT4 cold range anywhere from .6 to 1.6, which is the full range for FT4. so, how is TSH supposed to accurately predict levels of FT4 and FT3, and thus be viable as a diagnostic for thyroid hormone levels? No way.
As for why this misconception gets perpetuated, I can only refer to a survey of doctors that showed that the way they practiced medicine was based on what they learned in Med school over 17 years before, on average. Even though it was expected that they would continue to learn new methods and concepts, it wasn't happening. I suppose because they are so busy they have no time to do so, even if they had the inclination. So only the truly dedicated, open-minded doctors seem to recognize the problems and try to find solutions through extensive research and trial of clinical treatment.
There are lots of scientific studies that concluded that suppression of TSH when taking thyroid meds is a common occurrence. Yet, this goes unrecognized by the medical community in general. There are even several studies that concluded that a thyroid patient's clinical status could not be determined by any of the normal thyroid tests, so the best treatment for a hypo patient was to prescribe enough thyroid med to render the patient clinically euthyroid (neither hypo nor hyper symptoms).
Dr. O believes in treating patients, not lab results. So, if you clearly spell out the kind of symptoms you still have, and note that you know how Free T3 correlates best with hypo symptoms, and that your Free T3 is too low in the range, consistent with hypo symptoms, I don't think there will be a problem getting her to prescribe T3 med, and an increase in your T4 med as well. Might be good to ask for a 2 month script for 10 mcg of T3 daily, starting with 5mcg and then going up to 10. And ask for a followup appointment and tests in about 4 weeks.
This is an opinion, and I realize it may not be well accepted, but I think you should take the advice of your doctor, not an internet opinion group when it comes to thyroid and pregnancy. I think it is fine to tweak one's own meds if so inclined, but to take the life of your child and place it into the mere opinions, though based on experience, is absurd.
I don't want to get too far off topic here, but I have to ask why internet forums would exist if all we did was tell people to "do what the doctor says"?
Given that Doctor X will treat symptoms and numbers one way and Doctor Z will treat them entirely differently (or not at all), when we deal with the medical establishment, what are we doing but putting our lives in the hands of people with "...mere opinions, though based on experience..."? A good part of medicine is opinion, not science.
And in this case, when the numbers even defy the science, should we just blindly follow?
I never advocate self medication, but I also think we know ourselves best, and there is nothing wrong with encouraging people to seek out a second or third opinion. toni2251 says, "Any suggestions when I see doctor O?" So, there obviously is a second opinion in progress. As you know, the medical machine can move slowly...
I think you misunderstood the intent of the info I provided to Toni2251. I have spent countless hours researching everything I suggest to fellow members. I can support everything I say with references to scientific studies. So I think that rises above the category of mere opinion from the internet.
If you read carefully you will notice I suggested that it, "Might be good to ask for a 2 month script for 10 mcg of T3 daily, starting with 5mcg and then going up to 10. And ask for a followup appointment and tests in about 4 weeks." Clearly if this is out of line this doctor would not agree and would go in a different direction. I know you had the best interest of Toni2251 in mind, but I think your concern was misplaced.
I understand what you are saying, but I've been to at least six doctors and been been sick for two years. I'm angry that I've had to go through this for so many years. Everytime I left the doctor, I would be in tears because they made me feel like I was stupid. This forum has been my only help and hope. The people here have given me more advice than any doctor. I come here for ammunition. If I didn't have there advice, I would probably be dead, literally. The current doctors I'm seeing for pregnancy want to lower my meds despite how low my free's are. They don't care how I feel. One doctor said maybe you have MS. I left the office crying because I've had every test done, only to find out that its my thyroid.
The people here have really blessed me. Let me add that my ob/ gyn is awesome, so I do trust my doctors but I don't trust everyone with an MD Behind there name. Finding a good doctor is so difficult. The funny things is, is most of the people I know with thyroid disorders have all went through the same thing. I don't get it.
Anywho, I am so thankful for medhelp. God has used these people to help me.
Toni-I hope you get some relief and soon. Like you, I find this peer-community valuable.
Goolarra and Gimel-My comment to Toni was directly from me to her. I was not suggesting she not do as either of you suggested. My comment would have been the same had I been the first response in the thread. I didn't even read either reply until just now and then did see that you both commented to me explaining your positions. I understand you believe your advice is sound, and perhaps it is. I merely believe that self diagnosing, self-medicating while pregnant is detrimental to the health of the unborn baby. I get that you disagree. It's ok with me that we do not see eye to eye on this. I would also add that I typically read many of your comments and find them quite informative and helpful. Your experiences are a vital part of why I come to this group.
Thanks for your reply. I think our misunderstanding is that we were not telling Toni to do anything without discussion with her doctor. If we slip and don't make that clear at any time, that is never our intent. Speaking for myself, I think it is vital for thyroid patients to go into the doctor with knowledge (and opinions such as I expressed) as needed for a full discussion with the doctor. Based on the extensive experience of our many members, total reliance on the doctor is frequently less than optimal. That is the basic reason why so many of us joined this Forum.
For example, you would expect that from their training and experience, Endos should be the best doctors to see for hypothyroid problems, right? Conversely, to me it seems that their emphasis on diabetes and their false assumption of total knowledge about thyroid are insurmountable obstacles for many of them to be effective at relieving symptoms of a hypo patient. Along that line, this is a very interesting article.
"...total reliance on the doctor is frequently less than optimal."
THAT is the quote of the year! And very eloquently stated as well.
A person either has to hit the lottery jackpot to blindly find a "good thyroid Dr", or the ONLY chance a patient has is to educate themselves and go into the Dr with a truckload full of credible, scientific, medical studies of ammunition. To even have a chance that the Dr. will take you even remotely seriously you have to come in loaded for bear.
Many Dr's ego is so large I'm not sure how their heads fit through the doorway of the examining room! This seems even more prevelent when going to a "specialist" or endocrinologist. Yet as Gimel p oints out, many of them know less about thyroid than a general practitioner.
And I believe a GP will be more often swayed by an educated and well prepared patient than a specialist. This is because it is at least a remote possibility that a GP will know and realize he or she can not be expected to know everything about everything and realize his limitation and lack of keeping up with the latest medical studies etc.
Whereas, a patient has only to dedicate their time to the focus and study of one particular ailment, such as thyroid issues. In which case the patient now with the internet has the ability to do 10 times the amount of study in one particular area than a GP could even dream about doing.
An Endo or other "specialist" has had a whole separate and different level of head expanding air pumped into his head so to confront this indivudual only seems to make them get overly defensive whey a paitent starts revealing study after study that the so called "expert" has no clue even exists!
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