Frustrated w/endocrinologist: prescribed meds for DS, won't see DS for 3 months

[unsinkable]

I am frustrated. My DS (14) got sick last week w/a high fever & exhaustion. His pediatrician did some bloodwork & his TSH came back really high (14.7) but his T4 was "normal." He didn't tell me the number.

 

The peds office sent a request to the ped. endocrinologist to review. The endocrinologist just prescribed synthroid, repeat bloodwork & wants to see him in 3 months.

 

When the pediatrician's nurse told me this, she said how pleased she was that the endocrinologist agreed to treat DS, that she was glad things were moving along.

 

I told her that I think they are just treating the symptoms and not getting to the reason his thyroid isn't working.

 

She said sometimes the thyroid just stops working. She told me to google it.

 

I told her I don't have a thyroid gland and it is not something I want my DS 14 to deal with the rest of his life --- her response was that "we don't get pick what we have to deal with in life."

 

Is it me or should there be more done? They didn't even tell us if this might be temporary or permanent!

[EKS]

The thing that's striking me here is that the endocrinologist prescribed a powerful hormone treatment without examining him first. Is this really right? I would think they would at least redo the bloodwork *before* placing him on the drug.

 

IMHO, of course.

[unsinkable]

The thing that's striking me here is that the endocrinologist prescribed a powerful hormone treatment without examining him first. Is this really right? I would think they would at least redo the bloodwork *before* placing him on the drug.

 

IMHO, of course.

 

I KNOW!

 

They didn't even look at him!

 

What if the bllod work was an error?

[unsinkable]

I understand your frustration. Maybe they won't know more until the Synthroid has had time to take effect and they see what kind of impact it has on his blood tests?

 

That is a possibility but they didn't say, "We're going to try this b/c we're thinking this might have happened."

 

KWIM? It was just, "Here take this."

[HollyDay]

I would be very, very frustrated!!!

 

The only positive spin I can put on this, is that he does not have an appt for 3 months and does not want your ds to suffer that long. Do you have other options. Folks here are literally driving 2 or more hours one way to see ped specialists because the wait is so long....

[Parrothead]

I am frustrated. My DS (14) got sick last week w/a high fever & exhaustion. His pediatrician did some bloodwork & his TSH came back really high (14.7) but his T4 was "normal." He didn't tell me the number.

Was the fever diagnosed?

 

The peds office sent a request to the ped. endocrinologist to review. The endocrinologist just prescribed synthroid, repeat bloodwork & wants to see him in 3 months.

It may be 3 months until the endo has an open new patient appointment. But I would be very cautious about giving prescriptions without a definitive diagnosis. I'd want to hear the words Hashimoto's Disease. Or some other name of a thyroid disease.

When the pediatrician's nurse told me this, she said how pleased she was that the endocrinologist agreed to treat DS, that she was glad things were moving along.

 

I told her that I think they are just treating the symptoms and not getting to the reason his thyroid isn't working.

 

She said sometimes the thyroid just stops working. She told me to google it.

 

I told her I don't have a thyroid gland and it is not something I want my DS 14 to deal with the rest of his life --- her response was that "we don't get pick what we have to deal with in life."

She is s dingbat. Sometimes we don't get to pick who we have to deal with at the doctor's office.

 

Is it me or should there be more done? They didn't even tell us if this might be temporary or permanent!

There may not be more to be done at this point, but you should have been told by one of the doctors.

 

That said, I've been through four endocronologists. The first one was wonderful. Unfortunately we had to move 6 states away. The others, not so much. #2 was arrogant, #3 tried to treat without seeing me (I never got an appointment date, but two requests for blood), #4 was dictatorial - I did not feel as if questions would be responded to. I often wonder if it is this particular specialty that makes them so difficult to deal with.

[unsinkable]

There may not be more to be done at this point, but you should have been told by one of the doctors.

 

That said, I've been through four endocronologists. The first one was wonderful. Unfortunately we had to move 6 states away. The others, not so much. #2 was arrogant, #3 tried to treat without seeing me (I never got an appointment date, but two requests for blood), #4 was dictatorial - I did not feel as if questions would be responded to. I often wonder if it is this particular specialty that makes them so difficult to deal with.

 

The ped. decided the fever must have been a virus.

 

They didn't do that test for Hashimoto's (the one that shows the antibodies.)

 

The only thyroid tests they did were T4 & TSH.

 

I had asked his pediatrician last week if DS's thyroid felt normal on exam & he hmmed, like he was checking the chart, but he never answered me. He HAD checked DS's lymph nodes which were enlarged & tender.

[unsinkable]

I would be very, very frustrated!!!

 

The only positive spin I can put on this, is that he does not have an appt for 3 months and does not want your ds to suffer that long. Do you have other options. Folks here are literally driving 2 or more hours one way to see ped specialists because the wait is so long....

 

That is too bad.

 

I really wonder if I need to ask for a second opinion and if DS is old enough to see a NON-pediatric endo. Probably not, b/c he is only 14.

[Tess in the Burbs]

I just reread and realized you didn't SEE the Dr! Ugh. Get an app't. Get a second opinion...even if with a new Family Dr who won't do this to you again.

 

Original post:

I think the Dr should have redone the bloodwork and then prescribed the meds. Yes, thyroids just stop working, and yes, it takes about 3 months for the body to adjust to the medicine, but he could have felt for a goiter and perhaps ordered an US on the thyroid.

 

He probably won't know what caused it. The Dr is simply 'trying' the medicine approach to see if the body responds.

 

WHen you go back in 3 months for repeat bloodwork ask for the antibody tests. these could tell you if this is a hereditary type of thyroid problem or just a normal slow time.

 

Thyroid Antibodies

Also known as: Thyroid autoantibodies; Antithyroid antibodies; Antimicrosomal antibody; Thyroid microsomal antibody; Thyroperoxidase antibody; TPOAb; Anti-TPO; TBII; Antithyroglobulin antibody; TgAb; TSH receptor antibody; TRAb; Thyroid stimulating immunoglobulin; TSI

Formal name: Thyroid peroxidase antibody (TPOAb); Thyroglobulin antibody (TgAb); Thyroid stimulating hormone receptor antibody (TRAb)

 

 

I was treated for years without any of the antibody tests. It was such a relief to have the results and KNOW it was a hereditary type of thyroid disease. It didn't change my course of treatment but I sure hated being told thyroids just stop working. ((HUGS))

Edited February 2, 2010 by tess in the burbs
reread OP

[jenn-]

I would get a second opinion. At least make the pedi redraw the blood. I had a friend who had cancer and the chemo damaged his thyroid, it functioned but poorly. He refused to take anything for it until it finally dropped down below a certain percentage of functionality (it ended up being 4 yrs after the chemo). He said once you go on thyroid meds, you were pretty much stuck on them for life. I would be paranoid about starting a drug for 3 months that may end up being an error, but not being able to go off of them.

[Parrothead]

The ped. decided the fever must have been a virus.

 

They didn't do that test for Hashimoto's (the one that shows the antibodies.)

 

The only thyroid tests they did were T4 & TSH.

 

I had asked his pediatrician last week if DS's thyroid felt normal on exam & he hmmed, like he was checking the chart, but he never answered me. He HAD checked DS's lymph nodes which were enlarged & tender.

Lymph nodes being enlarged and tender are a sign that his body was fighting a virus.

 

There shouldn't be a reason that your ds can't see a non ped endo. Lots of people don't take their kids to pediatric specialists.

 

When I was diagnosed the doctor ordered 5 vials of blood taken, and a radiation test to see my thyroid working. I was not medicated until all these tests came back.

 

The more I think about your ds, I would urge you to be hesitant about treatment until you have a specific diagnosis. A general "thyroid isn't working diagnosis" should not be allowed.

 

Does he have other symptoms to go along with the blood test? There is a fairly long list that I can't remember right off.

[kewb]

I would get a second opinion from another endocrinologist. I love my endo but I know many people with horror stories about theirs. It is very difficult to find one who will truly listen to you.

[LNC]

The idea that a specialist would accept a new patient, prescribe medication without seeing the patient, especially a child - and a nurse tell the mother to "GOOGLE it" - is just horrifyingly negligent. I would recommend that you insist your pediatrician make a phone call for you to get you in immediately.

 

You should not interpret tests or treatment with Google or through a message board, you need to meet with a doctor.

Edited February 2, 2010 by LNC

[Sputterduck]

I agree that it's not a good situation. Maybe doing *something* and then seeing him in 3 months is better than doing nothing and seeing him in three months. If he is booked that long, then he is. He can't fix that, but might feel that can't do nothing. Know what I mean?

[Only me]

I agree about getting a 2nd opinion. We've had to deal with a lot of specialists lately and I know that it can be very frustrating. My daughter is also 14. She needs to see a rheumatologist but the only pediatric one that I could find (and I live in the Chicago area!) couldn't get her in until the end of April. Now I know that may not seem like very long but we've been dealing with this problem for so long that we don't want to wait 3 months to reach another dead end. I called around and not one regular rheumatologist would see my daughter since she is under 18. You might have the same problem. Fortunately I called back a few weeks later and the person I talked on the phone this time was very helpful. She was going to put dd on a waiting list in case there were earlier cancellations and it turns out that someone canceled for next week so we got in.

 

I would not feel comfortable just putting your son on the medication without the doctor seeing him first. I think that I would want him to have a 2nd blood test that was more thorough first or at least to be examined by the specialist.

 

My daughter had one test done (saliva test) to check for her cortisol levels. They were way low and one doctor wanted her to go on steroids. We went to an endocrinologist who ran a few more blood tests. Even though her cortisol levels weren't where the doctor would like to see them they were "within normal limits" and did not warrant being put on steroids. I'm glad that we got a 2nd opinion.

 

I see that you are in "lake effect land" but I'm not sure which lake you mean. Are you close to the Chicago area? If you are we took my daughter to an endocrinologist out of Children's Memorial and we were pleased with her. We wish that she could have helped my dd but we did like her and it didn't take forever for us to take an appointment.

Edited February 2, 2010 by hpymomof3

[TravelingChris]

I have a daughter with osteoporosis so since that is treated by endocrinologists, she has seen two. THe first was completely unhelpful. She didn't figure anything out and gave us not only no answers but no possibilities either. SHe also didn't seem to think it was a serious problem. I serached the internet and found out that a specialist in juvenile osteoporosis was based in the next state over. I called the clinic and their response was like night and day. They scheduled us within the month, they sent us info to give to our pediatrician to start the tests going, and they ordered Dexa scans. Now a year later, we still don't know why dd has osteoporosis but after a six month course of Fosomax, her bones grew enough to stop. She hasn't had any bone issue since August. She is now osteopenic on the DEXA scale versus full blown osteoporosis.

 

NOw I think the doctor may not have an appointment for three months. Everywhere I have been, we have long waiting for ped. specialists. There aren't enough of them in many fields. WIth my older, we did end up using an adult neurologist for her seven month long headache and he finally stumbled onto the correct medication to stop it. Do I blame him for the failed trials- absolutely not. So much in the medical field is unknown.

 

I think the problem is that they don't know why it has stopped working. I would want more tests before putting on any medication but if the tests come back again, thyroid medication is probably what he needs.

[Pamela H in Texas]

There is NO way I'd be treating a child for thyroid issues if he hadn't SEEN an endocrinologist.

 

And btw, have you SEEN my posts about what happened with my daughter? My daughter would have DIED had I followed the direction to have her take the synthroid for 2 weeks and then follow up with our family doctor (btw, she was 14 at the time!).

 

NO NO NO NO NO. Absolutely find a doctor and have him seen. There are REAL issues with his TSH being that off, but there are REAL issues with treating thyroid issues without confirmation that that is really what is going on (btw, it wasn't in my daughter's case).

 

When my son's thyroid showed slightly off, we went to Children's (doc did a full thyroid test so Children's Endo had that to go off of as well as seeing ds).

 

Anyway, there is NO way I would treat a child without having a full thyroid test done AND an endocrinologist seeing him. Do you live in an area where you have a choice of pediatric endos? You may find an endo that does both children and adults.

 

Was other testing done for anything else? Did he have a urine test? other bloodwork? Anything palpatable? etc?

 

This REALLY worries me. And I realize that is partially because my daughter almost died from a very similar situation, but.....it worries me also because how promptly and specially my son's situation was handled. And I think children SHOULD have extremely careful care!

[HollyDay]

I've got another question to ask.

 

Is prescribing a medication for a child (or adult for that matter) that the doc has never even seen, legal? I know our docs will not prescribe or renew allergy meds if they have not seen us in 1 year. Some of the meds for allergies, they will not even renew if they have not seen us for 6 months. These are common, non life saving, typical prescription allergy medications. Not something as critical as thyroid.

 

Our insurance explained that there is a question of billing and responsibility. If the doc has not seen your ds, then is your ds his patient? If he had an emergency, would the doc see him? If something needed to be adjusted with the medication, would the doc see him? Whose patient is he? The pediatrician could honestly say he didn't prescribe. He is not treating your ds for this condition. I wonder what the endo would say. Who has liability? Just a thought......

[unsinkable]

(OK -- I feel like someone dropped me on my head. My other DS is really sick now. Sore throat, vomitting, no fever yet. Add this to worry about DS14...)

 

Pamela H --what happened to your DD? I don't remember seeing it!

 

I can't remember who asked but the endo had the ped write the script. Maybe that is how they explain/excuse/justify not seeing DS.

 

And my DH had filled the script & gave DS a dose yesterday morning before I posted so DS has already started the synthroid.

 

I'll post an update about trying to get a second opinion.

 

Thank you everyone so much. It is kind that you take the time to respond.

 

:grouphug:

[Jen in PA]

Just wanted to add in that my doc (family practitioner) retests TSH and T4 every 6 weeks until she gets 2 consecutive in-range readings paired with the patient stating they feel better. And that's for adult patients -- I think 3 months sounds like an extremely long wait.

[kalanamak]

#2 was arrogant, #3 tried to treat without seeing me (I never got an appointment date, but two requests for blood), #4 was dictatorial - I did not feel as if questions would be responded to. I often wonder if it is this particular specialty that makes them so difficult to deal with.

 

 

That's too bad. Since it is not one of the famous-for-the-money subspecialties, like cardiology, the endos I've known have usually been really sweet guys (meaning they went into it because they loved it, not because it was the top of the heap). "Pussycats", my mother would have said.

 

Some, however, are very focused on diabetes. Sometimes the abrupt doc is the 20 lbs of potatoes in a 10 pound bag. They have so many referrals, and some for really sick people, they feel pressured to fly through the simpler cases. Sorry you had bad experiences. Believe me, I know the arrogant types all too well.

[Impish]

I can respond as an adult that has had hypoactive thyroid for 16 yrs. I started synthroid based solely on a low TSH. I believe I was in the 90s? or so when I started. I didn't have other testing done at the time, just my GP.

 

I saw an endo about 3 months later, same as your son, who ran more tests and confirmed what we knew. The effect of the synthroid was enough to tell me that we were on the right track.

 

Perhaps it was because I was an adult, or loved my GP, or it was 16 yrs ago, but what is happening with your son I honestly consider to be normal, as it follows my own experience with hypoactive thyroid.

 

Mine 'just stopped working' too, although they did suspect it was linked to my first pregnancy, and the Dr at the time simply put every symptom down to being pregnant. My son was 2 yrs old when I was finally dx.

[Pamela H in Texas]

Just a little more stuff:

 

As an adult, I also just had a regular doctor prescribe synthroid originally. In fact, it was 10 years before I saw an endo the first time. And MY endo does testing every 5 weeks til you're within a range (in my case, it's not an ideal range as my Hashimoto's is so out of control that we couldn't get that). 3 months for the first test is insane. And btw, mine blew with pregnancy/birth also. I gained 70 pounds in about 2 months when my son was 5 months old.

 

Anyway, as for my daughter. She had some weird symptoms including what looked to me like a goiter. Because of pitting edema, we took her to the hospital. I mentioned something about thyroid and when they did the bloodwork, the TSH came out high (7-ish). Doc gave dd synthroid and told us to check with our doc in 2 weeks.

 

Well, what REALLY was going on was that my daughter had nephrotic syndrome due to a kidney disease (a fairly common one, though rare in girls especially after puberty). Not only was her thyroid effected, but her liver, heart, etc also. Doc didn't catch ANY of this! Her situation was so poor that she could have died at any point and definitely would have had we had the attitude, "well we saw a doc and he said give the meds some time then go see our family doc." Anyway, instead, we took her to Children's the next night. She was admitted, did a billion tests, and started on treatment as soon as they ruled out certain causes. This was back in Sept 2007.

 

Anyway, if you aren't comfy, there is a reason! TRUST YOUR INSTINCTS!