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Old 08-04-2012, 03:18 AM   #1
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Newly diagnosed

At my recent physical, my blood test came back with a TSH of 7.69. She put me on Levothyroxine 50mcg. The first couple of days I thought it was really going to help. I had more energy...but now I seem to be back in the same boat.

I need some basic information...I don't see my doctor again until October. I have been exercising for 30 years. I do aerobics and/or muscle building every morning. And, when the weather is nice, I'll go for 1/2 hour to hour walk in the afternoon.

I'm not sure what would have triggered this condition. A friend who has the same thing told me I should be eating more protein...? I borrowed some books from the library and could find nothing to explain what might have caused my thyroid to start to malfunction. Or, anything about how I should be eating.

Can anyone help???

 
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Old 08-04-2012, 03:37 AM   #2
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Re: Newly diagnosed

Hello Welcome to Thyroid Board
The most common cause for hypothyroidism is Hashimoto's thyroiditis which is an autoimmune issue. It's usually revealed by high thyroid antibodies (TPO and/or Tg ab). It's very common to feel worse for awhile in the beginning of medication but once your thyroid levels start to normalize - this takes weeks and you may need a higher dose for this - you'll start to feel better. There are some good basic books like "The Complete Idiot's Guide to Thyroid Disease" on the subject you might want to look into. If you have a thyroid autoimmune issue diet may not help much, some have found relief through cutting out gluten and/or bad carbs. Make sure you get your labs taken after 6-8 weeks on medication, aim to get your TSH around 1 or so, FT4 and FT3 usually need to be in the upper half of the range.

Last edited by FinnMaid; 08-04-2012 at 03:40 AM.

 
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Old 08-04-2012, 05:50 AM   #3
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Re: Newly diagnosed

Thanks for the info! What is FT3 and FT4? My blood test only indicated the TSH was out of range at 7.69, doesn't even mention FT3 or FT4. My next doctor appointment is in mid-October. She indicated she would run another blood test, but I'm sure it will be the same type.

 
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Old 08-04-2012, 07:25 AM   #4
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Re: Newly diagnosed

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Originally Posted by ktnap View Post
What is FT3 and FT4?
These "freeTs" measure the available amount of actual thyroid hormones, T4 and T3. T4 ie. thyroxine is the main product of thyroid, it can be considered a "storage hormone". T3 ie. triiodothyronine is converted from T4 and it's the "active hormone". Often one gets by by keeping an eye on TSH and FT4 but FT3 can be very helpful especially when on thyroid medication. The basic med for hypoT is synthetic T4 ie. levothyroxine so T4 only and the body is basically supposed to convert the T3 needed from this exogenous hormone, often it's not able to do a very good job (although many doctors will tell us that poor conversion is rarely a problem ). Make sure your tests say "free" or "F", not "total, index or uptake".

Last edited by FinnMaid; 08-04-2012 at 07:27 AM.

 
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Old 08-04-2012, 09:04 AM   #5
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Re: Newly diagnosed

That book, or Thyroid for Dummies by Dr. Alan Rubin will explain the basics of thyroid function and dysfunction in an easy to understand way. Or you can read our "Thyroid Information" sticky thread, which is great too.

I'll throw in here... October is too long to wait to get your levels rechecked. If you just began treatment, the week of September 9-15 would be about the right time. If you aren't feeling substantially better then, call for an appointment and get checked before October.
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Old 08-04-2012, 10:59 AM   #6
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Re: Newly diagnosed

Am I seeing the wrong type of doctor for this? She's my primary care physician and she's not very broachable if I question her on things (like she thinks I'm second guessing her...I just want information!) I thought October was too long to wait, too but what do I know?? She's just piggybacking my appt. with a previously scheduled antidepressant checkup. On the one hand, it saves me money. On the other hand, it's longer to wait. I really did feel better for one or two days after starting the levothyroxine. That was short-lived. I'm thinking it needs increased. How do I broach the subject that there's another component (FT3)? I don't know that it's my doctor's problem..I always seem to have this problem communicating...

p.s. the test I took was just a regular blood count that I get at every physical.. it didn't mention FT3,FT4

Last edited by ktnap; 08-04-2012 at 11:21 AM. Reason: add a p.s.

 
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Old 08-04-2012, 09:45 PM   #7
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Re: Newly diagnosed

Endocrinologists are the "official" specialists who take care of everything to do with hormones. But practically speaking, although they might be okay with diabetes, they're usually the pits at thyroid disease. Almost any other kind of specialty might be better at thyroid than the garden-variety endo. But in truth, it's better to learn as much as you can about it for yourself so you can "guide" the MD into doing what you believe will be best for you. The educated patient almost always gets better treatment and achieves better health than one who leaves everything up to the doctor.

The prescribing information for levothyroxine products states that levels should be checked at 6-8 week intervals during the titration process, which means October is too long to wait. [You haven't actually told us the date when you started treatment. If you just did, than very early October might be fine, but late Oct. is surely too long. You can figure out the timing based on when you started.] The typical patient has a short period of feeling better after starting treatment, and then before levels are due to be checked again will backslide and feel worse ... Maybe even worse than they did before treatment. Waiting longer than that 6-8 week period can be torture for some. That's why I told you to call for an earlier appointment in case that happens to you. The dose cannot be increased before 6 weeks, though, so there isn't much sense having an appointment sooner than that.
Titration to your optimal dose is really a waiting game, and it takes patience and persistence. No short cuts can be made, but dragging it out longer than necessary isn't a great way to go, either.

Uncommunicative and uncooperative MDs are a dime a dozen. Always keep in mind that half of them graduated in the bottom of their class. We have to make it our business to find the very best. You're in charge of your health; they are your just employees in that endeavor. If you can't get through to this woman, and if she is making no effort to get through to you, you should strongly consider hiring a new health care provider. In fairness, she can't be expected to give you the long course in thyroid function/dysfunction; but neither should she resent you're learning about it on your own time.

The best way to monitor dosage is by testing the actual thyroid hormones - free T4 and free T3 - instead of TSH only. Doctors aren't taught this, but other thyroid experts who have bothered to learn things beyond their med school education know that it is true. If your case isn't handled this way, you may not achieve the wellness you expect.

It's really too soon to press the issue of a T3 supplement. For one thing, if a free T3 level hasn't been taken, you have no idea if yours is low or not. Many people do just fine with levothyroxine only. You could eventually be one of them. Pressing the T3 issue at this point will only serve to antagonize your doctor. But if you get to the point where your TSH and FT4 levels have "normalized" but your FT3 is low in its range and you still have symptoms, it may do you a world of good to try supplementing with a T3 med.

I'll say it again. Educate yourself before you try asking for things from your doctor that you don't fully understand.
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Old 08-05-2012, 04:26 AM   #8
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Re: Newly diagnosed

Thank you so much, that information was VERY helpful. I started the medication on July 20, so I'll call for an appointment in a couple of weeks.
I felt wonderful the first day or two on the Levothyroxine

I read the introductory articles. I'm really not understanding the F3 and F4. I'm hoping the books from the library will have something elementary.

 
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Old 08-25-2012, 03:47 AM   #9
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Re: Newly diagnosed

I'm back! I wanted to share that two weeks ago (4th week on 50mcg Levothyroxine), I felt great!! I thought the med was actually THE ANSWER ... I had a good energy level, my weight was back to normal, my mood was good, my mind was clear, I didn't have to lay down at all during the day, I slept through the night, I ALMOST had my "normal" (training) heart rate when I was exercising. It lasted about 3 days, now I'm back to the sluggish state I was hoping I wouldn't have to live at.

I had even started to taper myself off the antidepressant, I felt so good.
But now I'm wondering if that's what me go back "down"

Will this information do anything if I go into the doctor early? She's the one that didn't want to see me until mid-October...

 
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Old 08-27-2012, 03:14 AM   #10
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Re: Newly diagnosed

Any response? I'm getting extremely discouraged. I've been searching books, the internet for answers, but I don't seem to find any. Is what I experienced the other week normal? That I'd have a couple of days of "good health" ... even my weight dropped back down to normal.... And, then, sink right back into the depression, foggy mindedness, exhaustion, sleeplessness.

I even dropped my normal weight those 4 days. Normally I'm 100 lbs. and I feel every ounce I gain. The past two days I've weighed 102. This morning, I exercised like crazy and was only able to get my heart rate to 102. The heart rate I used to get was 132. Those 4 days, it was 126. I was even able to sleep good!

Am I going crazy? Is it possible to get back to "normal" living? I don't know what questions to ask or who to ask. I'm wondering my doctor's ability to treat me, but don't know how to go about finding a good one. I've had so many different doctors over the years that seem to be uncaring. I'm sure I must be putting off some kind of "vibe" to make them not want to help me.

 
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Old 08-27-2012, 08:42 AM   #11
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Re: Newly diagnosed

Prescription thyroid hormone isn't an instant fix like aspirin for a headache. It must be slowly titrated over the course of several months, until you reach your optimum dose - the one that will eliminate symptoms. Until that happens, you should expect repeated ups and downs. For many people (me included), when treatment begins or the dose is increased, no difference will be noticed for a couple of weeks. Then there will be some improvement (which can fool you into thinking, "Aha! I'm done!"). But then, there will be some regression until the next time you need levels checked and another dose increase made. This cycle happened to me for 9 months. I guess the average timeline would be about 6 months. It's very typical to feel nothing/better/worse for at least that long. MDs don't prepare us for that, and without thyroid forums like this one, we'd never know how common it is.

The key to success is having a doctor who doesn't treat every patient like a clone of the last one. We each have our own need for the amount of hormone prescribed. If an MD has a predetermined idea of anything related to hypoT treatment... Whether it's TSH only, an 'average' dose needed, or the need for a T3 med in addition to levoT... There will be a lower chance that we eventually achieve wellness.

Now... It's entirely possible that your antidepressant/depression is confusing the issue. If your depression is being caused by something other than your low thyroid, I'm thinking your symptoms could easily be explained by that. (But then, I'm no expert on depressive illness... Just thinking out loud.)
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Old 08-27-2012, 10:28 AM   #12
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Re: Newly diagnosed

Thanks for replying. I've felt so alone. I've been on Levothyroxine (50mcg) since
July 21st. Most things I've read said it will take 4 weeks. I was just so surprised to feel so good last week! I don't know how to function in life like this. I'm exhausted and I'm trying to eat less and exercise more (with not much success) so I don't gain too much weight. Who can afford a new wardrobe when paying alll this money for doctors and meds!

Also, the medicine says not to take within 4 hours of calcium. I have osteoperosis so I try to get 1500mg calcium a day. I'm finding it absolutely necessary to eat within the 4 hour time limit...I asked two pharmacists about it and they both said it would be okay to drink milk an hour later. I just don't know if is interfering with the medicine, but I don't know when else I could take it since I try to have milk with every meal. I would think pharmacists should know, but I don't know why the drug would state 4 hours if it wasn't an issue.

I'm going to post another message about what I just experienced with my doctor's office. I'm appalled! But, again, I don't know how to find another one that would be any better.

Ever since I've had this, I've talked to several women at my church who also have it, but when I try to talk to them about it, they don't know what their TSH is, let alone T3, T4 or even what dose of medicine they're on!

It's amazing that even after being in the news all the time a few years (when Oprah made it famous) more medical people don't know about it!

 
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Old 08-27-2012, 10:32 AM   #13
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Re: Newly diagnosed

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Originally Posted by ktnap View Post
f calcium. I have osteoperosis so I try to get 1500mg calcium a day. I'm finding it absolutely necessary to eat within the 4 hour time limit...I asked two pharmacists about it and they both said it would be okay to drink milk an hour later. I just don't know if is interfering with the medicine, but I don't know when else I could take it since I try to have milk with every meal. I would think pharmacists should know, but I don't know why the drug would state 4 hours if it wasn't an issue.
I think the calcium in milk is different from the calcium in pills (at least there's less of it ). Any case milk isn't as big of an absorption blocker as calcium pills so I think an hour is ok. Stay consistent so there won't be any surprises.

 
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Old 08-28-2012, 09:49 AM   #14
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Re: Newly diagnosed

Quote:
Originally Posted by ktnap View Post
I've been on Levothyroxine (50mcg) since
July 21st. Most things I've read said it will take 4 weeks.
What have you read that will take 4 weeks? Just about nothing in Thyroidland works that fast. LOL

The full effect of any particular dose of levothyroxine - whether it's a starting dose or adjustment dose - takes about 6-8 weeks. That's why it's futile to recheck labs sooner than that. But there's also no sense waiting much longer than that, either, if symptoms remain. Thyroid disease requires a patient patient. There's no getting around that. As I said before, there isn't an aspirin/headache kind of deal.

"Medical people" only choose to know what they learned in Endocrinology 101. They are taught that TSH is infallibly accurate, that T3 supplementation is never needed, and lots of other falsehoods about hypothyroidism that no one has ever bothered to research or publically challenge. Luckily, there are many MDs who take the trouble to educate themselves further once they leave med school, or else we'd be in an even deeper world of hurt.

You can have milk an hour after your levoT, but as Finn said, at least 4 hours apart from calcium supplement tablets. If you take your levoT first thing in the a.m., you can have food and drink other than water an hour later. You could then have your first dose of calcium around noon (or sooner, depending on when you take the levoT) and space out the rest till bedtime. If you aren't an evening snacker and don't eat within 2 hours of bedtime, you can take your levoT before bed. But your last dose of calcium has to be spaced well apart from that. Many people who must use the bathroom in the middle of the night take their thyroid med then. Food or supplements in the stomach are a non-issue that way, and they're able to eat as soon as they rise.

Some thyroid forum members have had luck locating good MDs by asking their area pharmacists (not their counter help - the actual pharmacist) for names of MDs who prescribe Armour thyroid or Cytomel. Be clear that you don't want a referral, because they are ethically disallowed from providing that. You just want names of those who Rx those drugs. Doctors who prescribe these drugs are generally better at treating thyroid than the majority who won't Rx them, so you may get lucky and find one.

Whomever you choose, it's probably a good idea not to overwhelm them with a gigantic symptom list all at once. Mention each one briefly, but don't fixate on any particular one. Never lead with weight gain as the main complaint, or the MD will believe you only want thyroid hormone as an easy weight loss aid and refuse you outright.
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Last edited by midwest1; 08-28-2012 at 09:55 AM.

 
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Old 08-28-2012, 10:41 AM   #15
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Re: Newly diagnosed

Good tips!! Will pharmacists give out doctor's names like that with the privacy laws in place now?

Unfortunately, patient has never been an adjective used to describe me . I know I need to learn it. I picked up some books from the library on thyroid conditions. The copyright date on a couple of them are 2004 but most are recent editions since 2009. The ones that talked about it said 4-6 weeks. I rescheduled the appt to eight weeks. I don't know...should I just wait for my October appt instead?

I'm always afraid to take something at night since I have such a difficult time sleeping. That's also when I take my Zoloft (which puts me out for 2-3 hours). I think the levothyroxine said not to take it around that too! Of course, doctors never pay any attn to those things when they prescribe them. I tried weaning myself off the AD when I had such a good energy level two weeks ago, but then I started heading back down again. I was back down to 100 pounds today, but haven't been sleeping well at all. I was hoping I could get into another spell like two weeks ago (good sleep, for a change!)

LOL! I know not to act like weight gain is my major concern..they'd laugh me out of their office and lock the door behind me. Besides, with me it's been the exhaustion and the brain fogginess that is really difficult. I hesitate to say that since I was practically referred to a psychiatrist yesterday!

 
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