How to go About Pursuing Treatment for Hypothyroidism?

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ValentineWiggin
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23 Sep 2012, 6:25 pm

My boyfriend and I have been talking a lot lately and we agree that I would benefit from pursuing treatment for hypothyroidism.
I have essentially every clinical symptom of the disease, from a(n extremely) low body temperature (I'm generally to be found in a hoodie and insulated pants, south of 85 degrees) to constant-exhaustion, irritability, etc,
but the real issue that I'd like addressed is the slow metabolism (500 calories as my maintenance number, sensitivity to carbohydrates, and all that).
The issues themselves continue to worsen, but they've all been present since I can remember, even as a child.

Both my mother and paternal grandmother take/took medication for hypothyroidism,
but in my case I'm scared to death to start this process-
my mother was diagnosed in part due to her obesity, which seems to be the only clinical presentation doctors care about,
and my grandmother was diagnosed decades ago when doctors actually learned about clinical presentation as opposed to lab numbers.

I'm scared to start the process because despite all my symptoms, I'm not overweight (though I easily could be, if I ate a fraction of what most do)
but mostly because, at least according to my research, endocrinologists worship the almighty TSH, or Thyroid-Stimulating Hormone, as the golden indicator of hypothyroid, which in many cases is never outside the reference range for many people later confirmed to have hypothryoid, in some cases even Hashimoto's thyroiditis. My TSH has tested "slightly" (whatever that means) outside the reference range before, but the endocrinologist still wouldn't give me medication for it, even when I told him my family history with the disease and my lifelong weight problems. I've been passed on for medication by two endos, actually, because my TSH was low-normal or normal, and I wasn't educated enough at the time to discuss it with them (in my research, it seems that, as treatment for hypothyroid is an ongoing process, I wouldn't have wanted them for physicians, anyway, if they were that tied up with TSH levels).

I don't have a real question, I don't guess. I was more wondering if anyone has any experience with how to find a doctor who would run tests on other indicators of thyroid underactivity at the very least, and who would at least help to properly-diagnose me. A website suggested asking a pharmacist for the names of doctors for whom they fill the most amount of thyroid hormone medication, and my boyfriend suggested seeking out older physicians who tend to be better-trained in actual clinical presentation and who use reference ranges as a guide, not a diagnosis. I'm physically-miserable all the time from being cold alone, and it's hard to maintain relationships when you sleep 14 hours a day. :cry:


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1000Knives
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24 Sep 2012, 2:05 am

Well, what I'm gonna suggest might sound a bit brash, but here's all I can think of besides just trying more and more doctors.

There's hormone replacement clinics. They generally don't have a good reputation, because lots of bodybuilders and athletes will go to to them to just get steroids, and they'll basically tell them "Here you go, blank prescription pad, I'll write you whatever as long as you pay me." It's in the same class as "pain management" clinics that'll give out a ton of opiate pills. Most of them are cash only clinics, also, most insurances don't cover them. There's some clinics that are a bit more...medical, than others, that might legitimately care about your medical issues and take a deep look at them, but yeah.

I'm only suggesting this if your search for a "legitimate" doctor fails. It might not be as black and white as this, though, and you might find a "hormone replacement clinic" that's not shady as hell and will give you good medical advice and will give you the medication you need, too.

Good luck.

(PS, have you tried any naturopaths, you could always try those, I've had decent luck with using herbal things.)



ValentineWiggin
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24 Sep 2012, 3:55 am

That's an interesting idea- I'll certainly keep it in mind, and thank you for replying.
I've been thinking more and more about finding a good naturopath- I use supplements to help with a lot of health-related things,
and I believe really strongly in alternative + holistic medicine.


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OliveOilMom
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24 Sep 2012, 4:40 am

I only have half a thyroid gland because my gyn found a nodule on it during my regular yearly checkup. The doctor I used at that time for my regular every day medical care was a general surgeon who was a good friend of the family. I had gone to him from the time I was 12 because I felt comfortable with him, and my pediatrician retired and I was very picky about who I would let touch me or order meds or anything. I went to Dr Joe like my gyn told me to, he felt my neck and ordered a MRI with radioactive contrast. The test showed that it was a cold nodule, not fed by blood vessels so not likely a tumor. They scheduled surgery and he went in and took half my thyroid gland out. He said I should be on meds so he wrote me some Synthroid but I couldn't take it. I had really bad side effects from it, and he agreed to a trial without it and I did fine. I've never taken meds for it since then and I have to get my thyroid checked about once a year. I told you all that so you would know that I've been through thyroid problems so my answer has credibility.

I would suggest going to your regular doctor and asking for a full thyroid panel. You want much more than just the t3, t4 and tsh. He will know what to order if you tell him you want the full panel. It's interpreted not only by whether or not the values are within normal limits but also by comparing the values to each other. When you get it back ask for a copy of the results. If he interprets it as normal discuss with him whether or not it's borderline hypo or slightly atypical. If he says it is but it's not at the point of needing treatment ask him if he would be willing to try you on a trial of low dose meds. If he agrees you are set. If he doesn't, then make an appointment with an endo and take your results with you. That way you won't have to pay for more labs. Talk to him about it the same as you did your GP. If he refuses to treat it ask him what other things might be causing your symptoms. Write down a list of your symptoms and how long you have had them. Not too much detail, just a little bullet per symptom with the length of time you had it. If he is in a large group of endos you could ask him to show your results to the other docs and see if they all agree with him, they don't always agree.

Many times a GP can treat your thyroid. My mother is hypo and her GP treats that for her. Specialists tend to be more particular about what they will and wont treat than GP's do. Good luck and let us know how it goes.


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ValentineWiggin
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24 Sep 2012, 8:35 pm

Good advice as well. I appreciate it. :)


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Mummy_of_Peanut
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25 Sep 2012, 7:12 am

Are you aware of the link between hypothyroidism and gluten sensitivity? It could be just a matter of giving up gluten to solve your problem, i.e. no need for meds. You don't need to be presenting with gut problems. It's just a thought. http://thyroidbook.com/blog/eating-glut ... -hormones/


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ValentineWiggin
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25 Sep 2012, 5:05 pm

Mummy_of_Peanut wrote:
Are you aware of the link between hypothyroidism and gluten sensitivity? It could be just a matter of giving up gluten to solve your problem, i.e. no need for meds. You don't need to be presenting with gut problems. It's just a thought. http://thyroidbook.com/blog/eating-glut ... -hormones/

I've been wheat free for a while now, things containing allergens aside.
I do know that I was lactose intolerant as an infant, and I highly-suspect wheat as causing a horrible skin reaction a few years ago.
I tend to not eat it because it's high in calories, anyway, but I agree that people with weight problems are likely more sensitive to certain foods.


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27 Sep 2012, 11:21 am

Okay this is more of a mind dump for hypothyroidism (sorry about that).

Things to get tested:

Directly related to thyroid: (you need all of these 3 following to get an accurate assessment)
TSH
T4
Reverse T3

Essential nutrients for thyroid function:
Iodine
Vitamin D
Magnesium
Selenium
Tyrosine

You also need to check the following things which are really important:
Do you have a progesterone imbalance? (this often causes thyroid problems)
Is it autoimmune related? (Check for antibodies - Hashis & Graves)
Do you have a gluten or dairy sensitivity?

You need to make sure that your body can convert the T4 to T3 - some people can't and that is what causes the problems.

If you have one autoimmune condition then you are much more likely to develop a second one. So if you have any previous autoimmune conditions, it's essential to get that checked.

And for the record, one of the first things the better specialists will tell you is to get off soy and soy products, because they mess with your thyroid function big time, especially if you know you have a problem with thyroid in the first place.

Personally - I just find a doctor and demand that they run the tests I want or need. I found a decent regular doctor and a decent specialist now who can handle my tendency to research the crap out of something before I walk into their office and appreciates that I educate myself about it, because that way we actually manage to have a decent and proper conversation and I walk away from the appointment with a better understanding of what I need to know and they usually get updated on some of the more recent research by me too.

If you are really stuck for ideas then as a starting point I would just go to your doctor and ask for a full thyroid panel (TSH, T4 & Reverse T3) and for an iodine and Vitamin D testing to be done, as the absolute minimum. If they ask why you think you need your thyroid tested then you can tell them your history if you want to. At the end of the day you're paying them and you're there for a reason, so don't walk out of that room until you get what you paid for in terms of both tests and answers (especially considering this isn't harmful in any way).


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ValentineWiggin
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07 Oct 2012, 2:48 pm

I don't consume wheat or dairy, but was lactose intolerant when I was a child, and suspect wheat as causing a major blistering skin condition a few years ago.

I have been consuming a lot of soy lately (I hadn't had any in years) and I've been considering dropping it altogether upon reading more about it's possible thyroid-related effects...

I've also been reading about seaweed as being helpful in thyroid stimulation due to the levels of iodine,
but I also read that too much can make underactive thyroids even worse, so I'm sort of between a rock and a hard place.
There is an asian supermarket near me that sells the real deal stuff, dried, for not a bad price.
I was thinking one serving a day?

Update:
I saw an endocrinologist, and she seemed to take my concerns seriously (she asked if I had ever studied biology, and I said "yes", and she asked what university, which led to an awkward conversation about me being Aspie and health being my special interest, but I digress...), saying that she thinks it might be an adrenal problem- she ordered six vials of blood taken, and then I had a shot of cortisol injected, and then two more vials taken at half hour and hour markers. She said we needed to figure out "where the insulin was going", since we talked about the relationship of glucose spike to weight gain. She says if this doesn't show any irregularities, then PCOS might be a possibility. I can call and find out the results Tuesday, but her next available appointment was in December, so I'm thinking I should see a couple more people before then. : /


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ValentineWiggin
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13 Oct 2012, 12:59 pm

Test results are back: my T3 was "super low", I don't know if this refers to combined or free.
They want me back for a "glucose tolerance test", in which they'll give me a sugar shot and track both my glucose and insulin response at periodic intervals.

I told the doctor that I've had irregular periods for a while, and I'm betting she's thinking that, in conjunction with the other stuff, = PCOS.


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16 Oct 2012, 7:51 pm

I have hypothyroidism. They noticed it when trying to figure out why my cholesterol is high and have since done several other tests. It also runs in the maternal side of the family. I have been on levothyroxine for approx 6 months and supplementing with the usual iodine, vitamin D, etc. It hasn't done a single thing. At last blood check it hadn't swayed the number one single digit.

I find the possible link with gluten insensitivity to be intriguing. I may try something with that.



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17 Oct 2012, 3:48 am

Looks like I'm late to the party, so I'll just add that I'm glad you're seeing a good clinician, and if you haven't already, discuss your diet with her; at 500 kCal/day, it's very possible you have some nutrient deficiencies.



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26 Oct 2012, 8:47 pm

LKL wrote:
Looks like I'm late to the party, so I'll just add that I'm glad you're seeing a good clinician, and if you haven't already, discuss your diet with her; at 500 kCal/day, it's very possible you have some nutrient deficiencies.


I agree with this.

Often nutrient deficiencies can contribute to or cause hypothyriodism in the first place. Once you have to east less to avoid gaining, that becomes a self-sustaining cycle which means you eat less and less calories and continue to get less nutrients which results in more nutrient deficiencies, which means that the hypothyriodism gets worse. Even if you eat a nutrient dense diet, at 500 calories per day you would definitely have nutrient deficiencies.

Have you considered using what I call a "back up plan"? In other words, every morning for breakfast, have a routine that acts as back up by making sure you give your body something almost completely nutritionally balanced every day. I understand that as a vegan this may be difficult, but it also may be one of the only ways to overcome this - which makes it all the more important.


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