Aa
Same Boat
It seems that so many have similar symptoms & being told that not related. My 13 yr old was diagnosed w/ Hashimoto's 3 years ago & she continues to have new little issues, Dr increases Cyntroid every 2-6 mos but new issues continue- Now, she has 1 swollen lymp node in her neck, next to thyroid but dr says not related to thyroid! Her neck is so swollen & she's self-conscious that 1 side is starting to look lumpier than the other!
I'm getting very upset! If I look at her clinical summaries of Dr visits/complaints over the past 3 years(mollescum, loss of vision, infection in scalp, constipation, fatigue, depression, mood swings), Dr says not related but online medical sites say they are all related... My child has changed a lot in 3 years but this was at a time in her life to expect great change- has this changed her path? Could I have done/can do something to prevent/heal.... Why am I afraid of offending my Dr? I've explained several times that I want more tests & if this doesn't run in our family, how did she get it? Mold? Iron Deficiency?
I'm getting very upset! If I look at her clinical summaries of Dr visits/complaints over the past 3 years(mollescum, loss of vision, infection in scalp, constipation, fatigue, depression, mood swings), Dr says not related but online medical sites say they are all related... My child has changed a lot in 3 years but this was at a time in her life to expect great change- has this changed her path? Could I have done/can do something to prevent/heal.... Why am I afraid of offending my Dr? I've explained several times that I want more tests & if this doesn't run in our family, how did she get it? Mold? Iron Deficiency?
COMMUNITY LEADER
You should always get copies of all lab reports and other testing diagnostic procedures. If you are in the U.S. the doctors are required, by law, to provide these copies, upon request.
If your daughter is still complaining of symptoms, even after her Synthroid is increased, something isn't right. If you only have orders for TSH and FT4, that may mean that they aren't testing the biologically active Free T3, which is the hormone that's actually used by the individual cells, while FT4 is just a storage storage hormone that has to be converted to FT3 prior to use. Many of us don't adequately convert FT4 to FT3 and have to have an added source of FT3. This could be your daughter's problem.
How often are they testing her thyroid levels? They should have caught 6" annual growth spurt if they were testing her adequately.
Remember, even the most highly trained doctors, at the most respected hospitals aren't always good thyroid doctors. Too many of them fail to actually treat the patient's symptoms - they simply follow a protocol or standard of practice that they were taught in medical school. I see this possibility in the fact that they may not have been testing your daughter's Free T3 or that they might only have been testing her once or twice/year. Since she was diagnosed 3 yrs ago, she should have seen some periods of improvement, by now, if her testing and treatment were adequate.
I get frustrated when I read that doctors are satisfied with progress and treatment, when the patient still suffers. That makes no sense to me at all and if there isn't a better plan of action (including Free T3 testing) derived from the appointment next week with the new doctor, I'd strongly suggest that you try to find a different doctor to treat your daughter, because these doctors will keep her ill.
If your daughter is still complaining of symptoms, even after her Synthroid is increased, something isn't right. If you only have orders for TSH and FT4, that may mean that they aren't testing the biologically active Free T3, which is the hormone that's actually used by the individual cells, while FT4 is just a storage storage hormone that has to be converted to FT3 prior to use. Many of us don't adequately convert FT4 to FT3 and have to have an added source of FT3. This could be your daughter's problem.
How often are they testing her thyroid levels? They should have caught 6" annual growth spurt if they were testing her adequately.
Remember, even the most highly trained doctors, at the most respected hospitals aren't always good thyroid doctors. Too many of them fail to actually treat the patient's symptoms - they simply follow a protocol or standard of practice that they were taught in medical school. I see this possibility in the fact that they may not have been testing your daughter's Free T3 or that they might only have been testing her once or twice/year. Since she was diagnosed 3 yrs ago, she should have seen some periods of improvement, by now, if her testing and treatment were adequate.
I get frustrated when I read that doctors are satisfied with progress and treatment, when the patient still suffers. That makes no sense to me at all and if there isn't a better plan of action (including Free T3 testing) derived from the appointment next week with the new doctor, I'd strongly suggest that you try to find a different doctor to treat your daughter, because these doctors will keep her ill.
Thank you for your response. I've dug through all of the clinical summaries but I can't find any of the results. Just the orders for TSH & Free T4. I do recall being told the results & explanation that as she grows, we need to increase dosage.
I was told that her recent levels were off (as bad as the 1st time tested, 3 years ago) because she had grown 6 inches in 1 year. We have a follow up appointment with a different Endo in the same practice at Nemuors Children's Hospital, this week.
So far, Drs feel comfortable w/ her progress/test results & Cynthroid dosage increases but my daughter continues to have symptoms & swelling/discomfort in her neck & new swollen lymph node.
Hopefully, we will have a better treatment plan, next week!
Thank you,
Tracy
I was told that her recent levels were off (as bad as the 1st time tested, 3 years ago) because she had grown 6 inches in 1 year. We have a follow up appointment with a different Endo in the same practice at Nemuors Children's Hospital, this week.
So far, Drs feel comfortable w/ her progress/test results & Cynthroid dosage increases but my daughter continues to have symptoms & swelling/discomfort in her neck & new swollen lymph node.
Hopefully, we will have a better treatment plan, next week!
Thank you,
Tracy
COMMUNITY LEADER
Why don't you start by posting your daughter's most recent thyroid labs. Her doctor should be ordering Free T3 and Free T4, along with TSH every time prior to increasing her Synthroid.
While the recent swollen lymph node may not be thyroid related, her doctor should be making every effort to find out what is causing it. Aside from that, the other symptoms you listed - constipation, fatigue, depression, etc - ARE thyroid related symptoms and indicate that her Synthroid dosage may need adjustment or that, possibly she isn't converting the T4 to the usable T3.
The biggest thing you can do is be your daughter's advocate to insure that she gets the best care she can get. I don't why afraid of offending your doctor, but if your daughter isn't getting adequate care, you need to find a different doctor...
Hashimoto's is an autoimmune disease and while autoimmunes tend to run in families, not every member of a family will get the same autoimmune disease and once a person has one autoimmune disease, they are more likely to get another. For instance, in my family, I have Pernicious Anemia and Hashimoto's, my son has Type I Diabetes and my daughter has Lupus... those are all autoimmune diseases, though not by any means all of them.
There are many different causes for Hashimoto's ranging from Environmental to hereditary, so it will most likely be impossible for your doctor to tell "how" your daughter got it and since there's no way to stop it, the best thing to do is to move on and learn what you can about treating the resulting hypothyroidism and making sure she gets the proper care.
There's no reason to think that your daughter can't have a normal, healthy life, provided she gets the proper treatment. She is a point in her life where her body will start maturing and there will be a lot of changes, naturally, and with Hashimoto's, there's constant damage to the thyroid, so her medication will have to be adjusted periodically to keep up with that.
If you print off information from credible sites, proving your points, some doctors will look at them, others will not and only get angry when patients do their own research. If you think yours is amenable, you can print off information to take to him, but make sure you're getting the information from credible sites, like a scientific study, etc - don't get it from some blog or something like that. Depending on the information you want, we can point you to credible information.
While the recent swollen lymph node may not be thyroid related, her doctor should be making every effort to find out what is causing it. Aside from that, the other symptoms you listed - constipation, fatigue, depression, etc - ARE thyroid related symptoms and indicate that her Synthroid dosage may need adjustment or that, possibly she isn't converting the T4 to the usable T3.
The biggest thing you can do is be your daughter's advocate to insure that she gets the best care she can get. I don't why afraid of offending your doctor, but if your daughter isn't getting adequate care, you need to find a different doctor...
Hashimoto's is an autoimmune disease and while autoimmunes tend to run in families, not every member of a family will get the same autoimmune disease and once a person has one autoimmune disease, they are more likely to get another. For instance, in my family, I have Pernicious Anemia and Hashimoto's, my son has Type I Diabetes and my daughter has Lupus... those are all autoimmune diseases, though not by any means all of them.
There are many different causes for Hashimoto's ranging from Environmental to hereditary, so it will most likely be impossible for your doctor to tell "how" your daughter got it and since there's no way to stop it, the best thing to do is to move on and learn what you can about treating the resulting hypothyroidism and making sure she gets the proper care.
There's no reason to think that your daughter can't have a normal, healthy life, provided she gets the proper treatment. She is a point in her life where her body will start maturing and there will be a lot of changes, naturally, and with Hashimoto's, there's constant damage to the thyroid, so her medication will have to be adjusted periodically to keep up with that.
If you print off information from credible sites, proving your points, some doctors will look at them, others will not and only get angry when patients do their own research. If you think yours is amenable, you can print off information to take to him, but make sure you're getting the information from credible sites, like a scientific study, etc - don't get it from some blog or something like that. Depending on the information you want, we can point you to credible information.
Have an Answer?
You are reading content posted in the Thyroid Disorders Community
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
