Thyroid Medication Options

Parent Cafe
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<p>Of course I didn’t mean my post to deprecate you, personally, performersmom! It’s just that I wanted to be sure that people reading are fully aware that the diagnosis is not at this time considered legitimate by mainstream medicine and that the treatment could do more harm than good. </p>

<p>I have nothing but respect for those who want to advance medical knowledge, but I also have little use for practitioners who violate the principles of good medicine they were taught and treat patients before the treatment, much less the diagnosis itself has been proven. The risks to the patient include dangerous therapies which may do long term harm or be a distraction from addressing other health issues. I don’t really blame frustrated patients who feel lousy and are willing to risk or try almost anything. I do blame the unethical practitioners who take advantage of them without any regard to safety and no apparent appreciation for the role of double blind randomized studies, and the scientific method.</p>

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<p>Here is a good layperson’s article on subclinical hypothyroidism: </p>

<p>[When</a> to Treat a Sluggish Thyroid - NYTimes.com](<a href=“Well - The New York Times”>Well - The New York Times)</p>

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<p>roshke,</p>

<p>The way it was explained to me was by making a comparison to gluten intolerance vs. Celiac disease. There are people who can have gluten intolerance, with having full-out Celiac disease… just as there can be people who have adrenal fatigue, without having full-out adrenal insufficiency. </p>

<p>I’ve even heard people who refer to their Celiac disease, yet aren’t horrifically sick if they have a a tiny amount of hidden gluten… to me is that really Celiac? Does Celiac only apply to someone who is horrifically sick with just a smidgeon of gluten? Can’t there also be people who have gluten intolerance, but who from time-to-time, have a hidden amount of gluten, and have some minor Gi upset for a day or two. Same with adrenal fatigue vs. insufficiency. For some people, their adrenals may be on their way to insufficiency, and be fatigued without having full out insufficiency, which is much more serious.</p>

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<p>This is KEY to this article. This group of specialists came out with these recommendations around 2003! And so many physicians out there are still stuck on the earlier reference ranges. My last TSH was 3.99 (my internist didn’t see much wrong with it, but he does defer to my endo); I was lazy last week and did not follow up with my endocrinologist like I said I would. That is changing tomorrow as I’ve not had a good weekend. AND I know he works late Mondays, and is very diligent at returning phone calls on Mondays!</p>

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<p>My sister has been hypothyroid and on medication for over 20 years. Overweight though she diets and exercises constantly. She started taking bioidentical hormones (estrogen, testosterone, progesterone…whatever she was low in). Within a short time she started to have panic attacks, didn’t understand why. They remeasured her thyroid and realized that since she had gotten her hormones in correct balance, that she now does not need medication for her thyroid, and now she was hyper-thyroid. So they stopped giving her thyroid medication. After 20 years. And she feels great!</p>

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<p>God I love hearing stories like this one! Thanks for sharing!</p>

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<p>Teriwtt, my understanding is that since you have a long history of thyroid disease and antibodies many endos would suggest keeping you targeted within a lower TSH range, while someone else with a 3.99, no antibodies, and/or unspecific symptoms might be monitored.</p>

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<p>That’s where it gets muddy. I never tested positive for the antibodies, and still continue not to. However, the endocrine surgeon who initially diagnosed the Hashimoto’s based it on how the gland felt and how it responded to being put on synthroid. He did not do the surgery (it was an insurance issues) so he never ‘saw’ the gland, and it never occurred to me to ask what the surgeon who did it, saw. I just wanted to make sure the nodule was benign, and that’s all I really cared about. It was then explained to me, though, by the surgeon who did the surgery, that it was wise to stay on the synthroid for the rest of my life in order to minimize nodules growing on the remaining half, which obviously did not happen, because I now have a nodule on the other side. But my antibody tests are still negative. </p>

<p>I will say, I DID call my endo today, and was able to get my appt. moved up from the 30th to the 20th, and I also requested he call me back today so I can talk to him about getting some blood work done ASAP. I really do think that half of remaining thyroid is not functioning up to par.</p>

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<p>Just wanted to thank everyone who has posted on this thread. I had tried to find other forums for thyroid patients to talk to each other about various ideas & such, but this one on CC is much better! I too am taking both T4 and T3, and the doctor insists on brand T3 (Cytomel) instead of generic.</p>

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<p>Heard back from my endo tonight. Am not having any blood work done until I see him on the 20th, but he does want me to add .88mcg. back in (here come the eye rolls!) 4/7 days a week. Basically he wants me at .50mcg., but since I have a supply of the .88s around, this is what I’ll do until I see him. </p>

<p>I also told updated him that my internist had put me back on a statin drug last month, only to update him on what I was doing to decrease my cholesterol which shot up this fall (he says due to my estrogen dropping). He told me it has hit the news in the past few days that statins in women past menopause are showing an associated risk with diabetes! He joked he’s not looking for any more diabetes patients, but that as long as I’m on a statin, we will need to watch my blood sugar more carefully, too. </p>

<p>[Statins</a> May Boost Diabetes Risk in Older Women - Yahoo! News](<a href=“http://news.yahoo.com/statins-may-boost-diabetes-risk-older-women-210414689.html]Statins”>http://news.yahoo.com/statins-may-boost-diabetes-risk-older-women-210414689.html)</p>

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<p>Ugh… just, ugh!</p>

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<p>teri,
Did your cholesterol go up after you stopped the thyroid meds??
Sub-clinical hypothryoidism can raise the cholesterol numbers…
Maybe they will head down once the thyroxine kicks in???</p>

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<p>I had been on a statin for years, and had been able to lower my dose with healthy exercise and better eating. In the fall, when I lost my appetite and was losing weight (while still working out until about mid-October) I decided to stop the statin and see what would happen. Prior to stopping it, my numbers were very, very good; the doctor I was seeing then says he looks at a ratio, as opposed to numbers, and my ratio was excellent. So I stopped it. Less than two months later (again, I was hardly eating anything at this time, and what I was eating was healthy), my cholesterol was through the roof, AND the ratio was bad. My endo said it is associated with lower estrogen; but he also said that typically after women get through peri-menopause, the cholesterol will stabilize itself, and until we got these last results back, he was willing to let me slide. But both my mom and oldest brother have a history of heart disease in their 50s, so he changed his mind and felt I needed the protection.</p>

<p>My mom had a silent heart attack in her 50s, but she’d been a life-long smoker and had had a hysterectomy in her early 40s. I don’t know if they put women on estrogen after hysterectomies in the early 1960s, so she may have never had the protection of the estrogen, along with the smoking. </p>

<p>This might be worth starting another thread on, but in recent weeks, I’ve been playing detective regarding my mom’s health, because it COULD direct some of the pharmacological care I seek out. When one of my cousins was visiting me in October and accompanied me to a new doctor’s appointment, as he was asking about family history of cancer, I only mentioned my dad. My cousin (11 years older than me) said, “Teri, what about your mom?” And I said, “What about her?” At that point she told me that my mom had her hysterectomy because she’d been diagnosed with an abnormal pap smear a couple of years after I was born (of course back then, if a woman of that age looked cross-eyed at anyone, they ripped out all of her reproductive organs!), and my cousin remembered it being a stage 2. I told her stage 2 is a staging of cancer, not pre-cancer. So a few weeks later when I was talking to my oldest brother, who is 16 years older than me, I asked him about it (he would have been 18 when it happened). He said he remembered she was diagnosed with cancer, and he remembers it very vividly because he was in college at the time and was very worried. But neither my cousin or brother remember my mom getting any chemo or radiation.</p>

<p>Fast forward about three weeks ago… I was talking to my godmother, who I stayed with while my mom was in the hospital for the surgery; they were basically my parents best friends. I asked her what she remembered about my mom’s cancer diagnosis, and she remembered it as my mom having her tubes tied, “So she wouldn’t be at risk of having any more babies with the problems like you did.” I was born with a cleft palate and cleft lip, and evidently it was quite traumatic for my mom, which I knew, but now I don’t know what to believe… did she have cancer? Or did she feel so guilty and ashamed of me that she told people she had abnormal paps/cancer to hide why she was really having the hysterectomy. </p>

<p>So I’ve contemplated, and mentioned this to a couple of people and have wondered how realistic it would be to get access to her medical history from 50 years ago. I wouldn’t even know who the doctor was, although I suspect I’d know the hospital she would have done it in. Or if I was able to locate her PCP she had prior to dying 7 1/2 years ago, would that history be in her medical record. My younger brother was her health care power of attorney, and I know he’d sign off on requesting any medical information I’d want. And the reason I ask this is because having cancer of the reproductive organs could influence decisions down the road as to putting me on hormones or not!</p>

<p>But yea, I’ve thought about starting a thread about how far back have people gone to get medical history from medical charts of people who have died years ago.</p>

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<p>In 1978, I got information about myself from a hospital I was in in 1961. The records were prints of microfiche, and were very difficult to read.</p>

<p>But terriwtt, you should go for it.</p>

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<p>Has anyone else had side effects from Synthroid of leg cramps or joint pain? I visited an endo for hypothyroidism a couple months ago because of TSH readings creeping up to around 6.9 over the past year. He started me on the generic version a couple of months ago, but I got a rash within a few days. So I took a couple of weeks off, then he started me on brand name Synthroid. After a few days I started to have joint pain (particularly in my back, where I once had a completely unrelated drug reaction in the tailbone joint area and hips – ow, missed a week of work then, etc.). It felt a lot like that, and just got worse over the next several days as I took Synthroid every day. Then leg cramps started. Leg cramps and joint pain are on the insert I got from the pharmacy as “call your doctor right away” side effects.</p>

<p>I stopped taking it and called his office, and his nurse (one of those gatekeepers who diligently requires that you play a game of telephone between her and the doctor) talked to him. They “decided” that I must have come down with something else unrelated (coincidentally) at the same time I started the meds, and should just wait a couple of weeks and then start on a half dose, then build up to the full dose again.</p>

<p>It has been two weeks since I stopped the Synthroid. My back felt MUCH better (I could walk and go to work without hobbling like I was 90 years old) within about 3 days, but I am still having some residual stiffness & pain first thing in the morning (which has disrupted my daily exercise routine, so I have gained 6 lbs. :(). I am extremely reluctant to start the Synthroid again, and frustrated that my endo (or his nurse, who may not be communicating everything to him) just wants to start the meds up again.</p>

<p>I should mention that when I saw the endo, my TSH readings were down to 4.9 (before I even started the meds, even though they had gradually increased over the past year with three tests from around 6 up to 6.91 – which is why I made the endo appointment to start with). I thought the thyroid couldn’t really heal itself once this cycle started… but can it? I am inclined to throw in the towel, cancel my endo appointment coming up, and ignore it for a while. I sure don’t feel inclined to take any more Synthroid, even half a dose.</p>

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<p>Teriwtt – I do some genealogy as a hobby, and one of the things I do whenever possible is to get a copy of the death certificate, which often also lists other co-morbidities and prior health history. Not a lot of detail, but I’ve been surprised at what I’ve found. Through the end of the 1960’s it seems that people really didn’t like using the “cancer” word – but doctors didn’t seem to have any problems putting it on death certificates even when it wasn’t the proximate cause of death.</p>

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<p>When I saw my endo surgeon back in November, my H came with me. H works for in big pharma. This endo surgeon was very adamant that he never prescribes Synthroid anymore. Over his many years in practice, he saw enough changes in his patients’ responses to Synthroid once the manufacturing moved to Puerto Rico, that he refuses to prescribe it anymore.</p>

<p>[Synthroid</a> Has a Long History of Problems, Says FDA – In Denying Synthroid’s Request for Special Approval Status, FDA’s Scathing Letter Outlines History of Subpotent Product, Inconsistency and Poor Stability / Thyroid Disease Information Source - Art](<a href=“http://www.thyroid-info.com/articles/synthroidproblems.htm]Synthroid”>http://www.thyroid-info.com/articles/synthroidproblems.htm)</p>

<p>If I haven’t made it clear enough in my many posts on thyroid issues, let me say it again, my endo surgeon was considered one of the top three in the country up until he moved into semi-retirement. So I trust his judgement. </p>

<p>Arabrab - about six weeks ago, I was able to get confirmation from my mom’s sister that my mom did indeed have cervical cancer, in situ. My mom’s sister is a retired RN, so I’m sure my mom confided in her with the correct information. As I’ve mentioned this to several of my physicians now (just so family history is up-to-date), they’ve each reminded me that the large majority of cervical cancers are caused by HPV; so, unfortunately, this information sheds new light on the history I thought I knew about my parents. I’m guessing the most likely speculation is that my dad picked it up while he was serving in WWII in Burma, then passed it along to my mom. So many secrets… they must have felt so much shame, if they even knew.</p>

<p>If anyone has read the book, The Immortal Life of Henrietta Lacks, you’d know HPV was her cause of cervical cancer that killed her; HPV was not identified until later, but because Henrietta Lacks’ cells are still being used in labs today, they are able to trace the HPV back to her days in the 1950s.</p>

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<p>Intparent - time to get a new doc! Teri - please keep posting and my vote is all endocrine issues are game for this thread - it’s all connected! It is amazing how much variation there is in doc knowledge / practice out there. This area of medicine is definitely one where medicine is an art! Each person is a canvas!!!</p>

<p>Genealogically speaking, this hypo stuff is very potent: DH mom figured out she was hypo as follows: HER mom (DH grandmother) spent the last decade + of her life with “non Alzheimer’s dementia…” That’s all they knew. Well DH mom started to feel mentally strained and went to her doc with the complaint that she was starting to feel like her mom, with some kind of dementia. Her doc dx’d hypo. We looked up hypo in the family medical book to see what the heck it was, and hey presto, made an immediate appointment for DH because he had been suffering every symptom in the book for about a decade himself, including weight gain, lethargy (physical and mental), constipation, dry skin and hair, yellowing of the fingers, bloating, depression, snoring so bad he had to finally sleep in a chair. I mean bag balm on the whole body all winter long to no avail type of skin itching and dryness. Oh and his knees hurt so much he couldn’t carry the kids or play bball and had carpal tunnel surgery and was considering knee surgery. His numbers when blood work was done were off the chart. He was placed immediately on the full dose of med’s at which point he paced the floor having a panic attack and told me he was unsure he could survive this. Bottom line, the doc was severely unsophisticated in endo issues (his internist) and DH was so mentally impaired he couldn’t tease out how to adjust and we knew nothing anyway. He survived (should have been brought up in dosage slowly we now know) and gained mental and physical stamina enough to get help from a great endo and after oh three years or so he got stabilized on a regime that works for him.</p>

<p>Deep breath.</p>

<p>Now. There’s more. Years before this, DH’s Mom’s brother (DH uncle) had alopecia (hairlessness of the whole body). His daughters inherited it. No medical condition dx’d other than a fancy name for hairlessness. Grew up with wigs and penciled in eyebrows. This Uncle died suddenly and totally unexpectedly of a heart attack in his mid 50’s. He actually died before his mom (the one with non Alzheimer’s dementia). We were stunned. Well cut to 20 years later when DH mom is dx’d with hypo and tells the family. Well the daughters of DH Uncle, who had worn wigs and painted on eyebrows their whole lives, hoofed it to the endo and hey presto, yes indeedy, hypo. So DH mom dx led to three nieces and her son receiving a dx. We now believe the granny and the uncle also had un dx’d hypo.</p>

<p>Hope that makes sense! Oh and yes, we have our kiddos tested every five years. They’ve each had two rounds so far and are approaching time for the third one. Just a simple blood test but you do have to ask, especially for men.</p>

<p>Ok here’s a very interesting twist for you genetecists out there: the son of the endo uncle - DH 1st cousin - was the only child in the family who did NOT have alopecia, nor hypo. From that guy’s POV, Granny had it, Aunty and cousin had it, father and sisters had it, he did not. Oh and DH brother does not have it; he has some symptoms (snoring, weight gain) but his numbers are ok. Go at it genetecists! Granny’s x goes to daughter (DH mom) and son (DH uncle); DH uncle’s y was ok so his son was ok; DH got the bad x; DH brother got the other x. Granny’s son’s daughters all got the bad x. There ya go?</p>

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<p>Teri thanks for that link re/ Synthroid manufacturing. Stunningly important.</p>

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<p>My endo has a great reputation, I asked around in the medical community before making an appointment with him. He took a ton of time at my first appointment and answered all of my questions (I was stunned at the amount of time he took, I haven’t chatted with a doctor for that long in over 30 years, even when I have been in the hospital!). He is fairly young, and seems very knowledgable.</p>

<p>I am thinking I am going to stay off the meds until my second appointment (in mid-April). I have a lab test scheduled for a few days before, and I will keep that. Then with those results and this drug experience, I will see what he has to say. For now I am going to assume that maybe the nurse did not pass on all the information I gave him about previous reaction, etc. I will also take in my insert that came with the drug where I have underlined the symptoms I experienced.</p>

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<p>I was on Cytomel for many years and it was much more effective for me than Synthroid. Unfortunately, I cannot find anyone who will even consider it or test for T3. Could anyone with the names of endos in the central NJ or NYC area PM me?</p>