Hi,
My daughter (17 yrs) with Down syndrome has been diagnosed with hypothyroidism. She is taking L-thyroxine (50mg) since July. She started with 25mg, after two weeks, she took 50mg, and later 75mg. After two months, another blood test was taken and the doctor saw that the dosage was too high, so she lowered it to 50mg again. While she was taking the 75mg dosage, my daughter had diarrhea every day and pain. All this time I was giving her the medication in the morning as instructed. I have to mention that my daughter visited an endocrinologist but the one following up is the family doctor.
Despite the doctor's recommendation and in view that my daughter complains every day about this pain, I began to give it night, but I am not sure if the effect of the medicine will be affected.
It is worth mentioning that my daughter STILL has the pain (abdominal) in the morning, even though she is taking the pill at bed time.
On a related issue, doctor says that my daughter is overweight (76 kg) because she is eating too much, and that the diarrhea and the pain is due to this, too. She suggested that she see a nutritionist, because she believes the pain could be a psychosomatic symptom. (Not wanting to go to school because of the pain).
Seeing a nutritionist will be helpful, but it happens that my daughter is almost non-verbal and her comprenhension level is very limited.
Would appreciate your comments.
Thanks
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hi there Ana,
You can not simply close your eyes to hypothyroidism when you have it. In many cases, hormonal replacement is suggested but if you are not really comfortable with it, you can opt for thyroid medications or natural thyroid remedies.
January 12, 2011 - 7:50pm[solicitation website removed by Moderator, per posting guidelines]
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Hi my duaghter is in terrible pain with wind. She could not tolerat Thyroxine mentally if she took it in the morining. Now she taking at night she knows what she is doing in the day, but crippled with wind pain and nothing will shift it. Please get back to me, put all this as one.
May 16, 2010 - 3:22am(Personal email address removed by EmpowHER Moderator. To protect the privacy of members we encourage the use of public comments or the email system provided by the site.)
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Can you explain what you are referring to when you say "wind pain"?
Your daughter could not tolerate the medication in the morning mentally, could you explain more what her symptoms were? What does "mentally" refer to?
Now, your daughter is taking the medication at night, but is experiencing severe pain. I am so sorry. Have you talked with her doctor about this? Are you sure it is the medication (have you ruled out other sources?).
May 16, 2010 - 8:50pmThis Comment
Hi Alison,
Just wanted you to know that today I got an answer from the doctor that did the study. The results are still valid and there is no harm to give the medication at night. The hospital in Rotterdam has a new name: Maasstad Ziekenhuis. I asked if there was a replica, but I did not get an answer to that.
I also visited another endocrinologist, a younger one, and she mentioned that although the medication is supposed to be taken in the morning, there are some patients that prefer to take it in the evening (at bedtime), and as long as the levels are good, there is no problem. My daughter's levels are fine so far. So, as you can imagine, I feel a lot better now, knowing that I am not doing something wrong, specially with somehting that has to do with the health of my child.
October 30, 2009 - 7:18amThis Comment
Ana,
I am SO happy to hear that you were able to speak with the doctor who conducted the study, and found that your instincts were right.
That is great news, and I wish you the best!
Alison
May 16, 2010 - 8:47pmThis Comment
It is great to hear back from you.
Regarding your question, asking for my thoughts on the resources you provided, I wanted to let you know that my professional advice is not as a medical doctor, but as a Health Educator. Therefore, I can speak to the credibility and reliability of journal articles regarding the research methodology used, and subsequent limitations, but not regarding the specific medical findings.
1. About.com is a helpful site for health information as a starting place, and to verify such information, it is important to go to the original source...which will always be the medical journal (in this case, journal of Clinical Endocrinology). The AARDA, unfortunately, referenced the same about.com article which I found very strange.
2. The original article can be located at: Nienke, Bolk, et al. (2006). Effects of evening vs morning thyroxine ingestion on serum thyroid hormone profiles in hypothyroid patients. Clinical Endocrinology. Volume 66 Issue 1, Pages 43 - 48. Published Online: 19 Oct 2006, accessed online: 11 October 2009.
My thoughts on the original article are: it is promising data, but unfortunately, may not relate to your situation. With such a small sample size (12 subjects), it is not generalizable to the general public, and not applicable at face value to your daughter's unique situation (without speaking to an Endocrinologist). This is not to say that the results are faulty or that your daughter taking her medicine at night vs. morning is not something for you and her doctor to consider...but I wonder why there has not been another study to replicate these very interesting findings after 3.5 years? Perhaps there has been attempts at replicating the study, but the results were inconclusive?
The study does have a person with whom you can correspond with (email below).
Correspondence: Arie Berghout, Medisch Centrum Rijnmond Zuid, Locatie Clara, Olympiaweg 350, 3078 HT Rotterdam. Tel./Fax: +31102911911; E-mail: [email protected]. I would be interested in learning if his team has replicated this study (and it is unpublished), or if he is aware of any other researcher's findings on this topic.
I would also ask your endocrinologist, as s/he would likely subscribe to this medical journal, and would be aware of recent findings.
Either way, I can see your motivation to have your daughter take the medicine at night, based on these clinical findings...and I would just confirm that these findings are still accurate, have not been re-evaluated and/or dismissed. Lastly, you may not find a clinical study that relates specifically to your daughter's circumstances, as many of these clinical studies will not include "subjects" who are on other medications, are within a certain age, have other medical conditions, etc.
And, as always, the medical community at its best does not know YOUR daughter as well as YOU do. If you are observing marked improvements with changing the timing of her medicine, please take copious notes as to the differences you observe, and let your doctor know that you are going against "medical advice" and giving her the medication at night. This will help your daughter with her care...and her doctor's may even begin to see benefit in this new regimen.
Does this help??
October 11, 2009 - 3:23pmThis Comment
Yes, it helps very much. I happen to live in Belgium, I will try to get in touch with the person in Rotterdam, through the e-mail address provided. Thanks a lot! and I will let you any comments I get.
October 12, 2009 - 1:02amThis Comment
Hi Alison,
Regarding the above, I found the following information about taking L-Thyroxine at bed time in the following link:
http://www.aarda.org/infocus_article.php?ID=42
Somehow this information gives me some relief, because I am worry that in this case, I am not following doctor's indication, but instead listening to other people's advice (including some parents of children with Down syndrome).
I apologise for insisting, and I know you already gave me an answer, but would like to know your opinion on this new info.
To complete the information on my daughter, I would like to add that she is taking the hormone Lutenyl, continuously, non-stop, in order to avoid having her periods. Due to her disability, she is not capable of handling her periods in a proper way, so the gynecologist suggested this alternative and at the same time protecting her of an unwanted pregnancy (although she is always under supervision at home as well as at school). Neither the endocrinologist nor the family doctor mentioned anything about this medicine interacting with the L-Thyroxine. Another medication that my daughter takes is Nassonex (nasal spray for the sinus congestion), she suffers from chronic sinusitis. Both medication supposedly contribute to her weight gain, but is either that or stop the medication, and the latter is not possible.
As to one of your comments, I think the hypothyroidism is a recent condition, because test were done last year and it didn't show any signs of it. Also the weight gain was dramatically seen within last and this year, plus the fatigue and the cold hand symptoms she presented before being diagnosed. At present, and with the adjustment of the dose to 50mg again, the diarrhea stopped, but the pain in the abdomen in the morning continues, and occasionally she complaints about headache and she feels warm. And yes, you are right, she does stay home when she is not feeling so well, but she is not allowed to do anything that will be interpreted as a reward (no tv, no computer), still she prefers to stay home and rest. When she feels better, she is enthusiastic to go to school (but very seldom).
Once again, thank your very much for your response and for taking the time. Also excuse me for being so lengthy in my posts!
October 10, 2009 - 8:48amThis Comment
This is the other link I wanted to post.
http://thyroid.about.com/od/thyroiddrugstreatments/a/bedtime.htm
October 10, 2009 - 8:57amThis Comment
Oh, and I just read the title of your post...and everything I have read on this medication says that it must be taken once a day on an empty stomach, 30-60 minutes before breakfast, in order for it to have the most benefit.
I wanted to make sure that the medication is not upsetting her stomach, as there could be some remedies for this---your pharmacist would know if this medication could be taken mixed in water or crushed form, or if there are any "tricks" to taking this medicine. If she does not have an upset stomach, but is experiencing "only" diarrhea, we will need to ask our medical expert about any possible remedies. Your pharmacist would also be a good person to ask about how to control the pain associated with diarrhea while taking this medicine, as s/he would know of any drug interactions (I would still run any new recommendations by your daughter's doctor before taking anything new).
October 8, 2009 - 12:52pmThis Comment