Hypothyroid - Hashimoto’s Expert Forum
No one believes me.
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No one believes me.

I've had hypothyroid for 10 years and I've been on synthroid since. About 13 years ago, I started getting symptoms weight gain, fatigue, intolerance to cold, hair loss even became very moody and got acne. I complained to my GP that I was feeling badly he tested me and it's negative. 6 months later I was not any better another test, negative again. Dr told me that my symptoms were normal for someone who is just getting old and I should just stop worrying I was 23. 6 more months and I'm still no better so I went to a Clinic and got tested again negative. Meanwhile I'm being treated by my dermatologist for my acne and when nothing helped he tested my insulin and saw it was high so they put me on meds to for it and once it was normal the symptoms kicked up to an 11. Nearly three years since the symptoms started by this time I've lost all my hair and not just off my head  I'm nearly 150lbs from 90lbs my skin is splitting it's so dry and I was literately incapable of staying awake longer then 4 hours my mind was so foggy I didn't even remember my own phone number. I made the doctor test me again this time it came out positive got my on the meds and I started feeling better.7 years I decide to get a little more healthy I quit smoking quit drinking coffee I started eating better took up yoga. At first I think I'm doing good it can take a few weeks to feel better. 5 months later I'm not getting better actually I'm getting worse I'm not losing weight but gaining it 100lbs and again lost my hair again every test done and every one of them normal except my insulin levels was high but my fasting glucose is normal. I was gaining on average 14lbs a week and nothing we did stopped it or even slowed it down. Then as quick as it started it just stopped my hair started growing back it only lasted a few months then I was back to feeling the way I did before. I don't know what to do or say anymore to get someone to help me both my GP and my endocrinologist think it's all in my head.
8846197_tn?1400507826
TattoGurl,

I hear your frustration. Telling someone who is 23, "You're symptoms are related to you getting old" is just plain crazy!  I can't force someone to think, or even listen to what I have to say. If they are that close-minded, I simply move on and find someone else to help me.

You describe at least two problems. Hypothyroidism and Insulin Resistance. Some of the symptoms of one condition are on the other list as well, so let me break this down for you.

1. Hypothyroidism is when there isn't enough thyroid hormone effect in your body. This could be due to insufficient amount of thyroid hormone produced (a low T4 and/or T3 level on blood test, often accompanied by a high TSH as your body desperately tries to compensate for the lack of thyroid hormones); or "Thyroid Hormone Resistance" (which can be caused by thyroid antibodies, a.k.a. Hashimoto's Thyroiditis; gene defects,many other causes NOT easily detected by blood tests). Either way, hypothyroidism can cause weight gain, fatigue, cold intolerance, hair loss, moodiness, PMS, depression, acne, dry cracked heels (and other dry skin conditions), etc.

2. Insulin Resistance is when your body doesn't respond well to the action of the hormone insulin, making the cells of your body (brain cells, hair follicle cells, muscle cells, etc.) all be starved for sugar (glucose), which needs insulin to work properly to get from your bloodstream into those cells. In response to "starving", e body tries to produce more insulin to compensate. Unfortunately the excessive insulin levels cause side effects of weight gain, fatigue, sugar cravings, acne, male pattern hair growth (hirsuitism), skin tags,mcherry hemangiomas,movarian cysts, etc.  

A Functional Medicine physician who listens to their patient, and still thinks, is what someone in your position needs. In my practice, I get to the root cause of problems (when possible). For instance,minsulin resistance is often caused by lack of minerals and vitamins in our diet, most notably, chromium, vanadium, and magnesium. Replacing those,mthe insulin works properly, the sugar gets into your brain, muscles, and hair follicles properly (instead of being squished into fat cells). As a result, less insulin is needed to do the job,and less insulin is needed to be produced, and with less insulin, there is less fat weight, acne, and other symptoms.

When people say crazy things such as "You're crazy!" when the reality is that they are just not good doctors who haven't been able to fix you, you need to get up, walk out of their office, and move on.
11 Comments
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903476_tn?1242240637
Thank you Doc, there has to be a root cause this is what I have been trying to tell my doctors. For which I have switched both my GP and my Endocrinologist my GP now is great. In the years since my diagnosis I have read every thing I could on hypothyroidism and how to eat for the medical problems I have. I don't eat too much sugar or any soy products. I have a dietician that has set up the best diet for me. I had no idea that my insulin resistance caused all that I only knew it was the cause of my acne and weight gain.

I've been tested for Cushing's and Hashimoto’s the antibody's test came back inconclusive and the biopsy on the noduals on my thyroid came back suspicious. There 1.1cm and perfectly round so they just left them alone but I'm booked for another biopsy next month. As of now I have no cause of why I got Hypothyroidism it doesn't run in my family and I never injured my neck.

I just need to know what tests to tell my doctor to order being that I'm Canadian I can get any test I want then I can post them here. Sadly my GP cant really read my tests like a specialist can and he has no problem giving me my results only result I can give you right now is my blood sugar I test twice a day before meal it was 5.4 after was 6.7.

I almost forgot one of the biggest things that bugs me. I was on 25mcg of Levothyroxine they upped my dose to 50mcg for 3 months tested me TSH didn't change lowered my dose back to 25mcg tested me again TSH didn't change so they tried 75mcg another test no change back down to 25mcg no change so tho put me back on 75 tested again no change not even a single point so they just stopped dicking with my dose.
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8846197_tn?1400507826
MedHelp's terms of service discourage their experts from giving patient-specific advice outside of a doctor patient relationship. As such, on this forum, I can't tell you which tests to order, nor what to do with the results you might post here on the forum. Sorry!
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Avatar_f_tn
Any doctor who is looking solely at your TSH to guide your thyroid treatment is only going to keep you ill. You need to look at the actual levels of thyroid hormone in your body! Between looking at results for Free T3 and Free T4 and taking into account your symptoms, you and your doctor should be able to find an appropriate dose of thyroid medication for you. And keep in mind that that just being "in range" on your lab results does not mean you are at an optimal level of hormone for you-- we're all a bit different.
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903476_tn?1242240637
I've had all my test done all my T3 and T4 levels I've had antibody tests and cortisol I've had biopsy's thyroid scans ultrasounds I spent 6 days in the hospital being poked at and turned inside out and according the 3 different doctors at the university of endocrinology my tests are "in the normal range". I've been sick longer then 2 days it's been more then 10 years since my diagnosis so I know you need more then a TSH and I was "ok" for years on the meds and magically out of nowhere after being on synthroid for many years I suddenly felt like I have never taken a pill in my life it lasted 6 months and poof as fast as it started it stopped. I stopped gaining weight after 100lbs I stopped being tired my hair stopped falling out and the doctors did nothing to make it stop it just stopped all on it's own. I've since changed my GP and my Endocrinologist twice none of them have been able to find out why I went in to a untreated state while being treated. I have seen nearly every specialist in the city and I've had so many tests I look like a damn ID drug user my arms and neck and so bruised and I have stumped the medical community here I was just hoping somewhere out there I was not alone and someone knew what was going on. Like I said in my first post I was sick for almost three years getting false negative tests before one finally came out positive. Being Canadian I can see as many doctors as I want and I have exorcised that right and they cant find whats wrong all they do agree on that there's something not right.
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Avatar_m_tn
You may need to switch Medicine check out this site to inform you on choices in thyroid Medicine

http://voices.yahoo.com/synthetic-vs-natural-thyroid-medication-synthroid-2632269.html?cat=71

I am not a doctor but I have Hashimoto the test that would be helpful for thyroid is

•Thyroid Stimulating Hormone (TSH) Test
•Total T4/ Total Thyroxine
•Free T4 / Free Thyroxine
•Total T3 / Total Triiodothyronine
•Free T3 / Free Triiodothyronine
•Thyroglobulin/Thyroid Binding Globulin/TBG
•T3 Resin Uptake (T3RU)
•Reverse T3
•Thyroid Peroxidase Antibodies (TPOAb) / Antithyroid Peroxidase Antibodies
•Antithyroid Microsomal Antibodies / Antimicrosomal Antibodies
•Thyroglobulin Antibodies / Antithyroglobulin Antibodies
•Thyroid Receptor Antibodies (TRAb)
•Thyroid-Stimulating Immunoglobulins (TSI)

Also get you Iodine levels checked and stay away from floride  Most people with thyroid need to go gluten free

I would also get a complete food sensitivity test there are only a few labs that do this but you may find out you have food sensitivy test

I would also have you doctor check for Lyme disease they have found out the many with Thyroid issues may have Lyme disease.

If your antibody test comes back with any antibody at all whether in range or not you will probably need to get your gut healthy because you probably have leaky gut. which is treatable through diet for the most part.

Finding a doctor who is more into Fuctional Medicine is better for those who have Thyroid disease

As I have said I am not a Doctor and not all these test are only suggestions. I hope this helps
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903476_tn?1242240637
I have gotten all the standard tests every single one about 100 times in 10 years I've had this and every time they either come back "normal" or "inconclusive" I've also changed my meds more times then I care to count. I've tried 3 different types of synthetic synthroid and the natural thyroid hormone even tried the cytomel I've also had my dose changed up and down half a dozen times and still when I get my blood tests my results are"normal" but I keep gaining weight and I'm always tired as hell and I'm freezing even when it's hot out I'm even losing my hair and my voice is going more horse.

Also I have a lot of major food allergies so I eat a special diet that I have for most of my life and there is no possible chance that I have Lyme disease in the whole of 145 years of Canadian history there's only three confirmed cases of Lyme in Canada. Ticks don't live this far north I can honestly say I have never seen a tick before in my life.

I saw a new doctor 2 weeks ago he ordered more tests and again they all came back normal except my insulin which came back very high but that's normal for someone with insulin resistance I was hoping to find something my the Endocrinologists didn't think of or haven't heard of yet.
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Avatar_n_tn
It took visiting 5 doctors and 7 years for me to be diagnosed... and only after I diagnosed myself, did all the research and demanded the doctor add: TSH T3 T4 T7 and to the constant Thyroid function tests that only looked for TH4 levels that were being ordered.
I recommend diet in the meantime, because for those seven years without meds, the only way I could survive was by reading constantly and slowly modifying my diet. Check if you have any allergies and try to cut out sugars, caffeine, alcohol, and additives. I found that by cutting out sulfur additives and reducing tanins I was able to be keep myself emotionally and physically stable (as long as I slept enough).
Best wishes and good luck, I hope you find a good doctor soon.
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903476_tn?1242240637
I don't know if you have read this thread fully I am on a very special diet I have been on most of my life since I have quite a lot of food allergies. I also don't drink or smoke or drink coffee and I have a massive insulin problem so I very rarely eat sweets and I'm Canadian thankfully a lot of our foods here don't have additives and preservatives other then salt and sugar. And I get more then enough sleep I can sleep 18 hours a day and still be tired.

I have done all the research seen half a dozen doctors and I've been on my meds for a decade but my symptoms have never gone away. They are a bit better I can stay awake longer then 4 hours at a time now and my hair stopped falling out but that's about it.

I'm one of those types that their symptoms are many and very extreme. I pretty much got them all and really badly. Like I said 10 years later and a million tests in and I'm no closer to know why or how my thyroid became damaged. All I know is I have three cyst like nodules on the right side of my thyroid and according to my Endocrinologist my thyroid levels are completely normal even tho I've changed meds and dosage more times them I would like to count and my levels have never changed.
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Avatar_f_tn
Hi. This is just a shot in the dark and it may already have occurred to you. Can you make any connection between getting a new tattoo and getting sicker? Hope you figure it out soon.
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903476_tn?1242240637
Of course I'm sicker now then I was 10 years ago and of course I have more tattoos but I had a good 8 or 10 tattoos before I ever started getting sick. I was about 23 when I first started feeling unwell, my first tattoo was when I was 15. Since then I have gotten like 10 more tattoos and yes I've gotten sicker but as far as I'm aware tattoos don't cause thyroid diseases. Maybe if they were done with dirty needles or what not but all my art work has been done in Grade A shop's.
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8846197_tn?1400507826
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Holistic Family Medicine
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