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mcmomuv4 · 02-20-2011, 02:24 PM

My 15 year old daughter has had Type 1 diabetes for 10 years. Her blood sugar has always been in relatively good control. Over the last two years she has had the following symptoms:

Extreme fatigue
Difficulty concentrating
"Foggy" head
Forgetfulness
Low heart rate
Swelling in her feet
Extremely heavy/painful menstrual cycles
Dry Skin
High Cholesterol
Frequent sinus infections
Headache

She has been out of school for 2 weeks because of the increased headache and fatigue she has had for the past month.

Her recent thyroid tests came back as follows:

Thyroid Peroxidase Antibodies: 417 High (reference range 0-20)
Antithyroglobulin Antibodies: 255 High (reference range 0-40)
T4 Free, Direct: 0.89 Low (reference range 0.93-1.60)
T3: 132 (reference range 71-180)
TSH: 4.090 (reference range 0.45-4.5)

Her pediatric endocrinologist says the problem is not her thyroid because her TSH is normal. He says he will recheck in three months. I am not sure I agree based on her symptoms.

Any advice?

cd37 · 02-20-2011, 02:39 PM

You are very right to disagree with the doctor.

It doesn't appear your lab updated their TSH ranges to the new ranges adopted by the
AACE (American Association of Clinical Endocrinologists) back in 2002.

The "new" TSH ranges are .3 - 3.0 with a note that TSH >2 is suspect for hypothyroidism.

Apparently, your doctor isn't up-to-date, either.

In addition, and more importantly, her actual thyroid hormone level T4, Free, Direct is below the bottom end of the range! This is blatent hypothyroidism - the doctor should be ashamed of himself.

I suspect he's writing off her symptoms to her diabetes but, with sugar levels controlled so well, he should be seeing the obvious - those are all symptoms of hypothyroidism.

Many endocrinologists spend so much time with diabetics that they are severely lacking the skills for recognizing and treating thyroid disease...many on this board (including me) can personally attest to this.

Sorry you and your daughter are going through this.

PS - the two antibody results indicate autoimmune thyroid disease - couple that with hypothyroidism and it looks like your daughter has Hashimoto's. You probably know that Type I Diabetes is an autoimmune disease - it's not uncommon to develop another.

mcmomuv4 · 02-20-2011, 08:04 PM

Thank you for your input. I am SO frustrated with this whole situation! Late this afternoon I went to wake up my daughter who had been sleeping on the couch. She cried because she was so tired and her head hurt so bad. Her eyes looked terrible and I was very worried about her. I decided to take her to Urgent Care. HUGE MISTAKE! The doctor there asked very rudely why we were there. He said that no Urgent Care doctor would ever prescribe thyroid to a patient, even if their thyroid level was zero, if they had already been seen by their Primary Care Physician for the same condition. He said that I could not go shopping around for another opinion because I did not like what her doctor said. He then went on to explain that she had two very abnormal lab results, but her problem did not belong in Urgent Care. Needless to say that we walked out before he was even done speaking.

I have been crying for an hour...

cd37 · 02-21-2011, 04:22 AM

I am SO sorry to hear of this!!

I had to check to see where you were located since, in the US, you most definitely have the right to seek a second opinion.....you ARE in the US so I can't believe what Urgent Care told you.

Admittedly, I can understand why they wouldn't Rx thyroid since it IS Urgent Care and she had been seen by another doctor...they were trying to cover themselves.

Hate to say this but, it looks like you'll have to do what so many of us had to do....find another doctor. I'm on #5 re care of my thyroid

I have a suggestion that's worked for others - call your pharmacist for contact info for doctors that Rx Cytomel or Armour....these are both thyroid hormone replacement meds that "with-it" doctors Rx. More likely than not, your daughter won't need these meds
right away - she'll probably be OK with synthroid/levothyroxine. The key is to partner with a knowledgeable doctor.

Best of luck to you - I can empathize

Reece · 02-21-2011, 05:31 AM

It's going to be tough to find a doctor to prescribe at these levels. Many doctors are resistant in treating unless you are clearly out of range for tsh. At your next doctor (I'm guessing you'll be doctor hunting) you can try the approach of requesting "a trial dose, to see if it helps her feel better."

cd37 · 02-21-2011, 05:38 AM

The killer is - the TSH IS out of range.....the current TSH ranges (established in 2002-03 by the AACE) are .3 - 3.0 with TSH > 2 as suspect for hypothyroidism

AND, the FT4 is BELOW range.

Admittedly, it's more difficult to get treated with in-range labs but her daughter's are clearly out-of-range on both counts.

I agree with the concept "a trial dose to see if she feels better"....that's how doctors used to treat patients presenting with hypothyroidism symptoms before the TSH test was invented. And that's when people were more likely to be properly medicated, unfortunately.

At the end of the day, it sounds like it's time to start doctor-shopping.

mcmomuv4 · 02-21-2011, 07:41 AM

Quote:

Originally Posted by cd37

The killer is - the TSH IS out of range.....the current TSH ranges (established in 2002-03 by the AACE) are .3 - 3.0 with TSH > 2 as suspect for hypothyroidism

AND, the FT4 is BELOW range.

Admittedly, it's more difficult to get treated with in-range labs but her daughter's are clearly out-of-range on both counts.

I agree with the concept "a trial dose to see if she feels better"....that's how doctors used to treat patients presenting with hypothyroidism symptoms before the TSH test was invented. And that's when people were more likely to be properly medicated, unfortunately.

At the end of the day, it sounds like it's time to start doctor-shopping.

mcmomuv4 · 02-21-2011, 07:52 AM

Looking back, I do understand why an Urgent Care doctor would not prescribe thyroid based on the need for followup care, but his attitude was the problem. He was SO RUDE from the minute he walked through the door. He had his mind made up before he came in that he was not even going to listen to what we had to say based on what the nurse told him. I was just trying to help my daughter who has not been feeling well for a long time. She looked urgent to me at the time which is why I thought we had Urgent Care, but obviously I was wrong.

We are in Southern California. Last night I emailed an endocrinologist in San Diego who I had met at a Children With Diabetes conference. I sent him my daughter's lab results and list of symptoms. He responded right away with a YES, YES, YES we need a second opinion and he gave me some names of doctors at UCSD who would help us. I also have the name of a doctor at CHOC who specializes in both diabetes and thyroid. I will be on the phone as soon as offices are open today.

Thank you again for the support. I just pray that we are on our way to relieving my daughter's symptoms that (looking back) started two years ago.

midwest1 · 02-21-2011, 09:24 AM

Even though it's wrong to generalize, I've always considered urgent care clinic MDs to be second-stringers who can't cut the muster anywhere else. JMHO.

I'm so glad you're on the right track now!

mcmomuv4 · 02-21-2011, 09:30 AM

I called her endo (who is also her PCP) and scheduled a sick appointment for today. We are going in for one last try...armed with a list of her symptoms as well as the information I have read regarding the controversy over what is a normal TSH. I am going to ask him if there is any harm in doing a trial of thyroid medication to see if it will make her feel better. My husband is going to come with us this time. Hope that will help and that he will take us seriously. Wish us luck!

cd37 · 02-21-2011, 09:41 AM

Quote:

Originally Posted by mcmomuv4

I called her endo (who is also her PCP) and scheduled a sick appointment for today. We are going in for one last try...armed with a list of her symptoms as well as the information I have read regarding the controversy over what is a normal TSH. I am going to ask him if there is any harm in doing a trial of thyroid medication to see if it will make her feel better. My husband is going to come with us this time. Hope that will help and that he will take us seriously. Wish us luck!

Glad you are bringing your husband along. One of my thyroid buddies has done this in the past with great success - pathetic that one seems to need "male influence", but true.

I hope you will point out that her actual thyroid hormone level FT4 is below-range....hands down hypothyroidism even if he isn't up-to-date with the latest-greatest TSH ranges. PS there is no controversy about it - my lab has the latest ranges on its reports.

Best of luck to you!!

And, please, let us know how things go....

mcmomuv4 · 02-21-2011, 10:22 AM

Can anyone point me to online medical research that shows definitively that the new range is 0.3-3.0 for TSH? I think it would really help. Thanks!

cd37 · 02-21-2011, 10:44 AM

we're not allowed to post links on this site....I suggest you Google something like "new TSH guidelines"

Many endo-written books about hypothyroidism mention the new ranges as well.....

cd37 · 02-21-2011, 11:05 AM

I did some quick Googling - the American Autoimmune Related Diseases Association says this:

" New TSH Range Suggested By Endocrinology Association InFocus, Vol. 11, No. 1, March 2003

New clinical guidelines published by the American Association of Clinical Endocrinologists (AACE) suggest that the TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder may be missing millions of Americans who suffer from a mild thyroid disorder but have gone untreated. Now the AACE encourages physicians to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0."

I know that the actual determination can be found 'cuz I've read it.....Google is a wonderful thing - I'll keep looking.

cd37 · 02-21-2011, 11:10 AM

I went to the AACE's website and searched "TSH guidelines" - this is what I found:

"Below is further explanation on AACE position on changing the TSH scores:

Until recently, physicians accepted the normal TSH range of 0.5 to 5.0 mIU/L. Recent data suggest that normal serum TSH levels may have a narrower range. For example, the National Academy of Clinical Biochemistry (NACB) guidelines believes that a sustained TSH level above 2.5 mIU/L might not be normal and that current TSH upper limits of >4 mIU/L are likely skewed by the inclusion of individuals with occult thyroid deficiency. The NACB guidelines were published in their entirety in the January issue of the Thyroid.

Last year an AACE task force reviewed available data and current trends in practice, and updated the AACE Guidelines for Clinical Practice for the Evaluation and Treatment of Hyperthyroidism and Hypothyroidism published in the November/December 2002 issue of Endocrine Practice. The task force also suggested that in patients on thyroxine replacement therapy, which is stated in the guidelines as "The target TSH level should be between 0.3 and 3.0 uIU/mL". By inference, any patient with TSH outside this range has an "abnormal" level which should be carefully followed but not necessarily treated. Some authors, however, treat marginally abnormal TSH when coupled with positive TPO titers because of high conversion rates to clinical hypothyroidism. This area remains very controversial but other endocrine organizations such as The Endocrine Society and the American Thyroid Association are in agreement with the AACE position. This point of view was presented, along with the new AACE guidelines, to the public in January 2003 during AACE's annual Thyroid Awareness Month campaign "

I suggest you go to the AACE site and print this out for your doctor....I think it's pretty good "ammo"

PS...after reading this, I guess this is where your doctor got the "controversial" bit but, it seems that the organizations that "count" recognize the obvious - hope the doctor does as well.

cd37 · 02-21-2011, 11:18 AM

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

juner50 · 02-21-2011, 12:07 PM

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!

mcmomuv4 · 02-21-2011, 02:31 PM

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!

cd37 · 02-21-2011, 03:23 PM

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.

arianne7 · 02-21-2011, 09:19 PM

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!

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