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Old 02-21-2011, 11:18 AM   #16
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Re: 15 year old with Type 1 Diabetes: Thyroid results

I did find other info that substantiates controversy but, at the end of the day, mention is made about "clinical presentation".

Well, your daughter has below-range FT4....and a host of hypothyroid symptoms. If that's not "clinical presentation", I don't know what is.

And, as I said earlier, there are a bunch of books out there, written by endos, that make mention of in-range labs and overt hypothyroidism.....again, your daughter doesn't even have in-range FT4.

Good luck - I'm rooting for you all
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Old 02-21-2011, 12:07 PM   #17
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Re: 15 year old with Type 1 Diabetes: Thyroid results

Being in Ca you have a much greater chance of finding a progressive Dr. You may have to kiss a few frogs to find a prince but your chances of finding a prince are very good.

I was bi-coastal for a few years and found the Drs on the west coast to be much more open. Drs on the east coast tend to be scared sheep!

 
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Old 02-21-2011, 02:31 PM   #18
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Re: 15 year old with Type 1 Diabetes: Thyroid results

We...we just got back from the appointment with my daughter's endocrinologist. He listened to everything we had to say, measured her thyroid, and gave us a prescription for 25 of Levothyroxine Sodium. He will measure her blood levels in 6 weeks and increase as necessary. He said that her thyroid is slightly enlarged and between that and her low T4 he could justify giving her the medication. He was very nice, but said he is not convinced that this will cure all of her symptoms. I believe it is definitely worth a try!

Are many of you with the same symptoms on the same medication? If so, do you remember how long it took for you to start feeling better?

Thanks again for all the advice and support!

 
Old 02-21-2011, 03:23 PM   #19
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Re: 15 year old with Type 1 Diabetes: Thyroid results

Congrats on getting the doctor to listen!! That is half the battle.

I have been taking levothyroxine sodium (T4 med) for over a year, titrating up on the dose as symptoms and labs dictated. I just started Cytomel (T3 med) recently.

I started on 25mcg levo and am now taking 88mcg along with 5mcg Cytomel.

I've been dealing with thyroid disease since June 2007 (my 50th birthday "present") and have been researching and participating on thyroid forums ever since.

I'm very familiar with hypo symptoms since, when I was hyper from Graves', my doctors often overmedicated me with anti-thyroid drugs.

My thyroid went underactive several months after I went into remission from Graves' (happens to 20% of us and can be temporary - so far, I have a year "in")

Thankfully, I partnered with a knowledgeable doctor before I went hypo since I know my 3 former endos would not have Rx'd the levo I desperately needed...they were "stuck on TSH".

I have had all of the symptoms your daughter has except for frequent sinus infections (please know that it is common to have frequent infections when hypo - I exercise daily and I think that helps with this)

I've also dealt with constipation, interrupted sleep, loss of strength, dry eyes, acne, achy joints/muscles, hair loss, itchy skin - including itchiness inside the ears, "air hunger" (feeling of inability to take in a good breath), pounding heart as well as heart palps, inability to exercise at my normal fitness level...give me time, I can think of more symptoms when my FT4/FT3 levels were too low for my body's needs.

She should start to feel better within a week or so.....if some/all of her symptoms return after that, it is a good indication that she will need a higher dose.

Unfortunately, you do have to wait 6 wks. for the dose to be fully evident in her levels.

If her FT4 has not risen to mid-range, at least by the time of these labs....and/or she still has symptoms, she should get a dose increase.

It's very important that her doctor work to find HER normal within the ranges of normal - this means a FT4 (and, hopefully FT3) level that leaves her without symptoms.

I need both my FT4 and FT3 at the very top of the range - any lower and I have hypo symptoms.....this is not uncommon for hypothyroid patients.
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Last edited by cd37; 02-21-2011 at 03:47 PM. Reason: typos

 
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Old 02-21-2011, 09:19 PM   #20
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Re: 15 year old with Type 1 Diabetes: Thyroid results

Hi, Im a few years older than your daughter and have had some of the same issues. My TSH was considered normal, but my T3/T4 were low, and because of my 'normal' TSH doctors didn't want to treat me. It was a huge relief finally being able to start medication.
To be honest, it was a while before I started feeling better - it came gradually over a few months - but now that I'm in a healthy range I feel good! I hope your daughter feels better soon!

 
Old 12-29-2011, 08:25 PM   #21
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Re: 15 year old with Type 1 Diabetes: Thyroid results

Just wanted to update you regarding my daughter's thyroid issue...

She started on 25 mcg of Levothyroxine shortly after my last post. Within a couple of weeks, she had a bit more energy and was able to go back to school. At her next endo appointment, we told the doctor this, and he said it could be a placebo effect...still suggesting that her thyroid is not the problem.

In August her labs were:
Free T4: 1.11
TSH: 2.06
Numbers moving in the right direction. I asked for a dose increase because she still didn't have the energy level she used to. He said no.

In October, she started feeling worse again. Last few months have been bad: headaches, nausea, fatigue, pale, etc. I asked for more comprehensive tests. Here are the results:

TSH: 3.96 (0.45-4.5)
Free T4: 1.04 (0.93-1.6)
T3 Free: 3.0 (2.3-5.0)
T3 total: 121. (71-180)
Thyroxine Bind Glob: 33. (14-29)

We received these results in the mail with an "all test results normal" type message. She still feels awful. Going for a second opinion next week...

Last edited by mcmomuv4; 12-29-2011 at 08:55 PM.

 
Old 12-30-2011, 04:11 AM   #22
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Re: 15 year old with Type 1 Diabetes: Thyroid results

I'm sorry your daughter is feeling like this, good she got a trial. Glad to read she did feel more energetic on it. It's not uncommon for people to feel better but lose that improvement again as long as they are not on the properly supplementing dose yet. Going from the recent levels, she still needs an increase, is there a way to discuss this with her doctor?

I'm sorry the ER doctor was that rude, I can understand them not starting thyroid treatment as such (well depends from the circumstances) but even than there is no need to be rude to people.

Don't give up and keep working on your daughter getting better.

 
Old 12-30-2011, 07:08 AM   #23
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Re: 15 year old with Type 1 Diabetes: Thyroid results

I agree with everything Lisa said.

Improvement after starting meds is a definite sign that the meds were appropriate. (and we all know her labs indicated the need for meds)

Backsliding with symptoms and resultant lower levels is to be expected. A starting dose is just that - a starting dose.

It's a rare day that anyone takes 25mcg as a therapeutic dose. In fact, if a person stays on the starting dose too long, things can get worse.

Midwest1 on here wrote a great explanation about this:

"The problem with "doses" less than 50 mcgs is that they have the capacity to lower TSH without raising the levels of actual thyroid hormones (T4 and T3). In most cases, the non-dose actually lowers thyroid hormone levels below where they were untreated. If the MD is mistakenly watching only TSH for thyroid status improvement, he thinks the situation is improving when it's actually getting worse."

"Low dosing is worse than no dosing, assuming you have at least some natural gland function left. The low dose lowers TSH, so your thyroid doesn't get the message to "pump it up". Therefore, you're left with less thyroid hormone than you'd have if you didn't take any med. If your gland is completely dead, low dosing can't possibly provide enough hormone to keep your body working efficiently."

I'm glad you're getting another opinion - it's clear your daughter needs a dose increase.

I feel so very sorry for both of you....for your daughter's suffering....for you as her mother knowing that it's happening (and the frustration of dealing with improper care).

((hugs))
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Old 12-30-2011, 01:17 PM   #24
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Re: 15 year old with Type 1 Diabetes: Thyroid results

Thank you for the support and validation. Too bad we can't get the same from the medical profession. It has been a long, frustrating few years. We are seeing the head of the pediatric endocrinology dept at CHOC next Friday. Hopefully she will get to the bottom of this issue. In the meantime my daughter continues to suffer. Her Dr is on vacation until Tuesday. I am so tempted to increase her dose myself but don't want to be labeled a "non-compliant patient." What would you do if you were me? What other tests should I ask for? Thanks again!

 
Old 01-08-2012, 12:59 PM   #25
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Update and question: 15 year old with Type 1 Diabetes

Great news! Second opinion endo said there is no question that my daughter needs a dose increase. She said her labs clearly showed Hashimoto's and a need for more medication. Her symptoms obviously show this is well.

She is also going to test her for Celiac disease which is much more common when you have Type 1 or other autoimmune diseases such as Hashi's.

A couple of questions for you all...

Are nausea, lack of appetite, and intermittent diarrhea and constipation common with hypothyroidism in your experience? Trying to prepare myself for a Celiac diagnosis if it is more likely to be that.

Given the fact that she has been on 25 mcg for over 8 months and has been feeling pretty bad for the last 3 months, how long do you think it will take the new dose to start making her feel better? She is so miserable and it breaks my heart.

Last edited by mcmomuv4; 01-08-2012 at 01:07 PM.

 
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