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How do I educate people about my thyroid disorder?

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Question - (28 September 2015) 11 Answers - (Newest, 6 October 2015)
A female United States age 26-29, anonymous writes:

I am suffering from hashimotos thyroid I'm only 20 years old if you dont know what hashimotos thyroid is its when your auto immune system attacks your thyroid in your neck and slows it down causing you to have hypothyroidism its a cronic disease where you are usually always tired feel fatique gain weight have mood swings and other harsh symptoms. I am currently on medication and have to be on medication for the rest of my life i feel depressed i am also married and i feel like i dont have the energy to do anything. I feel like a loser. I feel like to throw away my meds and fight this. I dont know how to deal with a disease that makes me so tired even after sleeping all night very well and theres no cure i feel like life is moving fast and i am always sleeping. I do work and i am so tired on the job i push myself to work. I dont know what to do with my life anymore. Its like nobody understands about what im going through they think im just lazy but im too tired and fatiqued to do much.

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A male reader, anonymous, writes (6 October 2015):

I am the anon poster from October 3.

Hypothyroid symptoms take a while to resolve, because it takes a while for the synthroid to build up in your body. If you know your math, you can calculate the build up rate, knowing that the half-life of synthroid is about 7 days. I have done the math. At two weeks you are at 75% buildup, so in your body your level is now 75% x 75 mcg = 56 mcg. Build up at 3 weeks is 87.5%, 4 weeks 94%, 5 weeks 97%. So you just have to wait a while yet.

As a thyroid patient it would behoove you to learn as much as possible about how to handle your thyroid problem. There is a great deal of misinformation on this topic.

As you mentioned, Hashimotos is an autoimmune disease. Your doctor is addressing the symptoms of that disease – low thyroid. But is your doctor addressing the root of your problem - your autoimmune disorder? Ask him why not? Do research on this yourself. If you can resolve the autoimmune problem – your thyroid may return to normal or near-normal. If you do not address this issue, you may find yourself facing other autoimmune problems as you grow older. You may have to seek out alternative doctors.

In my October 3 post I used the wrong units of measure. I should have used micrograms (sometimes abbreviated to mcg), not mg or milligrams. I stand by my statement that150 mcg is too much to take when you consider that a normal person’s thyroid only produces 85-90 mcg per day. The detrimental effects of taking too much will eventually catch up to you. Thanks.

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A female reader, CindyCares Italy +, writes (6 October 2015):

CindyCares agony auntI am not an endocrinologist, just a patient :) but FWIW I think it's all normal. Thyroid meds act slowly and gradually, it may take you 2 , maybe 3 months to feel sensibly better. I am sure anyway that your doctor will have told you that after 2/ 3 months of taking your meds you will have to have blood tests again to see if youe thyroid hormones levels have been stabilized and brought back within the norm, or at least closer to it. The doctor may decide to increase your dosage if what you are taking now is not effective. At the beginning, you get your prescriptions based on general age and weight tables, but in practice every thyroid reacts differently, so there will probably be some fine-tuning to do according to your blood tests results and your symptoms or lack of the same.

Also remember that probably many of your physical symptoms are connected to your being in a ( hopefully mild ) depressive state. I mean, who is who never feels a bit tired or under the weather or never has some little aches and pains , a hint of an headache , of muscle fatigue ?.... Only, the " normal " - for lack of a better term- person does not pay too much attention to it, does not focus on the complaint,he / she is easily distracted by a friend calling or texting, or something she sees in a shopwindow, etc.etc.- so , if it is not PAIN but just a " symptom ", t won't even really register. If you instead are feeling depressed or in a bad mood, you'll give a lot of attention and mental energy to the symptoms . But this too is going to change .

Another thing is that often with Hashimoto, iron , and vitamin B and D , are too low , which would cause fatigue, -you may need to take supplements. But ask your doctor first of course !

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A reader, anonymous, writes (5 October 2015):

This is verified as being by the original poster of the question

Right now im on 75mcg i still feel tired i have a bit of a swollen neck my endocrinologist says its a goiter but my meds should reduce its size not too sure if anythings working ive been on 75mcg for about 2 weeks its just okay so far i still feel a lot of the symtoms

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A female reader, CindyCares Italy +, writes (4 October 2015):

CindyCares agony auntAnon male : sorry, I used the wrong abbreviation.( Btw we can't purchase synthroid here , but I suppose the other stuff we use will be similar ). I meant 150 micron-grams . Don't have the right symbol on my keyboard ( greek letter ) so - slapdash of me :)- I used what everybody ,doctors included !, say here in normal parliance :em gee. But on the pill package obviously it says 50, or 100 , or 150 microgrammes.

Anyway , regardless of how much L-thyroxyne I personally consume a day, 1 micron, 1 milligram or 1 ounce.... that's not the point of my post ,since any quantity would not be self prescribed but taken by doctor's orders. The gist of my post was telling the OP- the truth : Don't worry, go to an endocrinologist, have him figure out what dosage works for you ( there are general guidelines based on age and weight, but in practice it is sort of a trial-and-error thing ) after which you remember to take your pill regularly every day and you go on having a very normal, HEALTHY life.

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A female reader, anonymous, writes (4 October 2015):

The good folks here have given you good advise. I've had it for years and as long as you find a good doctor who will prescribe the proper dose, you will be fine. Taking the pill in the morning will become second nature and soon you won't think about it beyond taking your pill and a periodic checkup. Easy!

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A male reader, anonymous, writes (3 October 2015):

As a long time user of synthroid, I can say that 150 mg is definitely too much for anyone. a person taking that may feel okay now, but eventually it is going to cause them problems. Keep in mind that a normal person’s thyroid only produces 85-90 mg per day – no one needs to take 150 mg.

A person can prove it by getting a reverse T3 (rT3) blood test – if the test result is above the mid-point of the reference range – that indicates the person is taking too much synthroid.

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A female reader, CindyCares Italy +, writes (29 September 2015):

CindyCares agony aunt Whoa OP hold your horses :). No need to panic like that ! I take it that you have been just diagnosed and have just started taking your meds maybe ?, so they have not quite kicked in yet ( also , it may take a while to find the dosage which is just right for you ). And also that's the shock talking, of finding out that at such a young age you are not as healthy and physically perfect as you have always thought you were.

But, Hashimoto is not that slow and painful death sentence you are making it. The bad news is that untreated , neglected or treated improperly, yes it can wreak havoc on your body and shorten your life expectancy.

The good news is that, properly managed , monitored and medicated, - you can live a perfectly normal life and totally forget for 95% of the time that there's something technically " wrong " with you.

I should know !- I have had a baaaaad case of Hashimoto since the last 20 years or so . And I mean , bad. ( I don't know what you use for hypothyroidism in USA, here we use something called sodic levityroxine , under a few commercial names , and the average dosage prescribed is about 50 mg daily; I am on 150 ). But with regular checks, and daily meds, I can't say that it has ever affected my life noticeably.

Sure, maybe I would not be the best for heavy manual labour, or rough,demanding physical activities -

then again , that suits ME perfectly, I was never one , even pre-disease, to go hiking in the wilderness and climbing rocks and chopping wood, that's just not me regardless of my thyroid. Then again, don't think that I live like an invalid , for instance I recently signed for a Bollywood dance class, and, while I sort of suck at it :), I have no trouble keeping up with my classmates who are all MUCH, much younger than me.

I have got plenty of tips and suggestions about dietary dos and don'ts , emotional balance , symptoms management, but that may be too technical and too long for a DC post. If you want to PM me , feel free - in any case, try to not stress about it . Hashimoto is a condition that you have to learn to live with , but it's a bit like ....wearing glasses if you become shortsighted. At first it feels weird and uncomfortable and as if all people are noticing and commenting about it ; and after a little while, ... basicaly you just forget about it and go on normally with life.

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A reader, anonymous, writes (29 September 2015):

I don't think it's necessary to explain something so personal. Don't you have enough to deal with without having to explain yourself to people who really should keep their opinions to themselves? Even if you sat them down to a lecture at a physician's seminar; people form opinions no matter how well educated they are.

You are placing yourself under undue pressure worrying about other people, just do the best you can. If your illness becomes a disability, you may have little choice but to apply for social security disability upon the advice of an endocrinologist. Too often people depend on general practitioner's to monitor chronic disorders far beyond their training and expertise. They suffer more, although they may be on a regimen of drug therapies that only make their condition worse.

Apart from the symptoms of your malady; you're tired because you're too busy worrying about what people think of you. That in itself is exhausting. It's most likely coupled, if not complicated, with depression.

You have a chronic illness. If you can't function without being so self-conscious; maybe you should consider applying for disability compensation, and working under medical restrictions.

You are struggling, and perhaps it's time you do see a specialist; and let a licensed specialist in the field of thyroid disorders tell you what is best for you to do.

Just having a name of the illness doesn't mean you're getting the healthcare that is most effective for your illness. These days doctors over-prescribe pain-killers that make people zombies. Get another medical opinion.

You won't find a cure; but you may get more relief. That's where you should focus your attention; rather than on the opinions of ignorant people.

Explaining your illness and discussing personal details about your illness isn't necessary. You're not a poster child. It's no ones business but yours, your boss's, and your doctor's.

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A female reader, femmenoir Australia +, writes (29 September 2015):

femmenoir agony auntHi,

very simply, carry within your backpack and/or handbag, many copies, about your condition and of what your condition entails and if/when, you encounter tricky situations, you can hand a copy over to the 'other' person.

This way, you needn't explain anything to anybody, the info on paper will do it's own talking, hopefully educating/enlightening the reader.

Also, worry not, regarding what 'others' say and/or think, because you will be the only one left worrying silly in the end and there is nothing you can do about what 'others' think.

You can only assist them, by educating them, hence my previous suggestion.

You cannot change anybody but yourself, so worrying needlessly, is a no win situation.

Try to change your mindset and think with more optimism.

Is your husband very supportive?

If he is, then you have even less to worry about.

Also, talk to your immediate family and close friends about any worries, or concerns that you may have.

It's amazing how much better we feel, after we've had a good chat with an understanding, supportive person.

So far as Drs are concerned, if you're not feeling happy with one, always seek a second and/or numerous opinions.

Some Drs have much more experience, pertaining to your situation, than others do.

I wish you all the very best and let me know how you get on! :-)

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A female reader, anonymous, writes (29 September 2015):

I have that disease plus Addison's disease. I lost thyroid function plus my adrenal glands. Both thyroid and adrenal glands regulate energy and metabolism. I had to travel over 1000 miles to find a doctor who could address both conditions. Most doctors only care about the numbers on a blood test and disregard what a patient feels like. First I was diagnosed with chronic fatigue syndrome which to doctor's mostly means crazy patient. It turns out all of the symptoms of Addison's disease are the same. Low cortisone levels, low thyroid levels equals sleeping 20 out of 24 hours a day and still feeling tired. Plus the entire world seems to think your problem is laziness depression or a bad attitude. Find a good doctor who will treat all of your symptoms and you will never have to explain what is wrong with you because within two weeks of being treated properly you will feel like a human being again. I am not the same as I was but I have a life now it has been 30 years.....sorry medicine has not advanced much.....still have found only 2 doctors who will prescribe what I need.

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A female reader, Ivyblue Australia +, writes (28 September 2015):

Ivyblue agony auntYou are already being robbed of what energy you do have so my advice would be not to be too concerned with the opinions of others.Unfortunately people can sometimes be ignorant . I mean, if they can see blood then there can't be a problem right? I had a quick google on the disease and saw a long list of symptoms that would impact the daily life and routines most of us take for granted. Perhaps this is where you could be guiding people or print off some literature and keep it in you handbag that way next time someone has something to say you can just say 'Here take a look for yourself'. I am a big believer in food playing a huge part in being an aid in healing or at the very least assisting the body in medicinal terms. In addition to your GP have you considered seeing a Naturopath?

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