Anyone with thyroid problems have trouble with meds working?

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Hello,

I'm writing this to try and help my fiance (55 years old and in good shape). He's not officially on the spectrum, but has a lot of AS/ADHD issues, so I am wondering if his failure to respond normally to thyroid medication could be due to neurological differences. Specifically, he's been on levothyroxine (Synthroid) for 6-months, with doses as high as 200mg/day, and his lab results are all good now, but he still has horrible symptoms. This medicine is suppose to be taken once a day, with it being no big deal if you skip a day, but in his case it only seems to last a few hours. He has to take it 3 times a day, 2 hours hours before any activity requiring his mind and body to work, in order to function at all, and even doing this he is still suffering from all kinds of symptoms. He himself is a pharmacist, has been doing all kinds of research, has seen an endocrinologist, but no one can figure out what's going on. What's especially interesting is that most people cannot take this med at night, because it keeps them awake, while he needs to take it at night in order to get a good nights sleep. That reminds me so much of the sort of reverse reactions I have to things having AS/ADHD myself, that it prompted me to ask this group if there could be a neurological issue interfering with things.

Thanks for any feedback from anyone that's taken thyroid meds or has heard about this,
Cat

I can take mine normally, but if I miss a day you know within a few hours that I've missed a day...its bad when I miss a day.

Which pathway does the drug use to work? Can he get a full liver enzyme panel done?

No issues here. I've never heard of such a high dose before.

He has had the full liver enzyme panel done, along with lots of other tests. He says the drug is converted in the peripheral tissue.

Based on the responses, it sounds like the problem isn't related to wrongplanet type issues, but it was worth a try. I'll try finding an internet support group for people with thyroid problems.

Thanks everyone,
Cat

Hello I was hypothyriod for many years but now I don't have one. I was diagnosed with thyroid cancer last year nd since then it has been removed.

With that his dosing sounds odd. I'm on 125 ml of levothyroxine and still having symptoms of hypothyriod even though the doctors say my t4 levels are perfect. So I am going to have my t3 levels checked. Insoire has a great support group called they a, it is for thyroid cancer and other thyroid issues veveryone there is very nice and informative and may be able to explain better.

Also check out this http://www.stopthethyroidmadness.com/t4 ... dont-work/

Thanks ASdogGeek!

I noticed some thyroid issues in myself and started looking things up. Seems hypothyroidism and autism are co-morbid:
"Of the individuals with autism, 35% had another comorbid psychiatric disorder. An overall prevalence rate of 10% for hypothyroidism was also identified" -is a quote from the literature

That also agrees with some of the posts here - there's a few talking about thyroid issues.

I have a savant type ability for a mind-body link. That with some ultrasounds made me realize that shutting down my thyroid reduced my aspergers symptoms. But too much shutting down leads to trouble - skin infections and the like. It seems like it's a way to short circuit signals from the body. That's hard to prove though, but I need to at least mention it.

Seems like there is also a depression - thyroid link in the literature. Which fits with a disconnection between brain and body.

I don't think the above will help RedwoodCat, but I suggest her Fiance bring some mental attention to the thyroid area, get a feel for it maybe. It's a shot in the dark, in comparison to direct medication.

We found a doctor that figured out the problem, both for my fiance and myself. It turns out that if someone has adrenal problems as well as thyroid problems, which is common for people on the spectrum, they need to take hydrocortisone pills along with the thyroid medication, or it won't work. In my case I've also needed acupuncture and very gentle med dosing to restore hormone balance. Also, if someone has adrenal problems, they cannot tolerate as high TSH numbers as someone without that problem. In my case 3.4 was too high, even though my regular doctor thought that was acceptable. Our doctor is Richard Shames, MD, and he is the author of a popular book on the subject (Feeling Fat, Fuzzy and Frazzled), though I have not read it. He has a son on the spectrum.