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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Wed May 07, 2014 8:11 am 
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Got my results and they are still within the normal range. Sigh. But I've made an appointment with my doctor for tomorrow morning anyway, because I feel horrible. I've got a list of symptoms to take with me. I'm hoping he either refers me out or decides to test other things. I can't accept that this is normal!

The numbers were TSH: 3.2 and T4: 18.


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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Wed May 07, 2014 8:16 am 
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Sorry PT. If you look on the Stop the Thyroid Madness website there is a list of suggested blood work to have done that goes above and beyond the norm. Hopefully your doc won't scoff at you for wanting extra testing done. Good Luck!

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Wed May 07, 2014 8:37 am 
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Ive been feeling better since I've lowered my dosage. My levels are now too low again but my hair is full, I dont feel like someone is choking me all the time and I can sleep most nights. I dont know, maybe my body prefers a slow metabolism or something...

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Wed May 07, 2014 9:15 am 
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VeganinBerlin wrote:
Ive been feeling better since I've lowered my dosage. My levels are now too low again but my hair is full, I dont feel like someone is choking me all the time and I can sleep most nights. I dont know, maybe my body prefers a slow metabolism or something...


That seems to be the more important part - that your body feels better at these levels. Normal is such a dangerous word. I used to experience it a lot with fevers. My brother and I have naturally low body temps, so when we get a fever - even a low grade one - we feel horrible and it's a sign that we're sick. However, docs just assume it's nothing too big to worry about because it's so close to "normal".

I seem to have every side effect of hypothyroidism except for the hair thing. My hair grows so fast. My throat is a problem and has been for some years now. I clear my throat and gag/cough a lot. I thought it was my allergies or maybe even reflux, but I've noticed from pictures that my goiter is getting bigger, so it could be the thyroid after all.

I only have a ten minute appointment with the doc tomorrow, but I'm going to be really clear with him. I have a list if symptoms - a number of which I've seen him for in the past.

I have tried to get him to test my b12 numerous times now, but he says I don't have symptoms necessitating it. He sent me to get something checked to see if I was anemic, which I wasn't, so he decided the b12 wasn't necessary. I've told him numerous times that I'm vegan and I learned recently that hypothyroid people can also be at risk for b12 deficiency. I'm hoping this time I can convince him, because I've been vegan for 8 years and have never had a b12 test and I'm not good at remembering to take a supplement.

If worse comes to worse, I can pay 50 euro to have it tested through one of those private companies.

The Stop the Thyroid madness site lists a ton of tests that I'm not sure he would ever agree to, but maybe I can convince him of at least getting a full panel with the t3 and b12. Fingers crossed.


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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Thu May 29, 2014 2:26 pm 
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Any luck PT?

I saw the endocrinologist on Tuesday and it was a total waste of time. She refused to test me for cortisol, insulin or any of the other thyroid functions. She re-order me a blood test for TSH only which I'm not going to get done. I almost punched her and walked out at one point. When I was asking her about insulin levels being a concern she said "well at your weight...". I wanted to ask for my 40 dollar co-pay back.

A friend of mine did some research for me online and I found another doctor to see who has a lot of really good reviews online and I'm seeing him next week. So hopefully he will be better!

Meanwhile, I'm still feeling totally run down and this brain fog thing is a bisque.

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Thu May 29, 2014 4:07 pm 
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GK, please file a complaint with your doctor's office. The comment she made about your weight is totally unprofessional. Health care providers are supposed to provide care, compassionately, and listen to their patients' concerns. I'm so sorry you had to go through that, and I really hope that your next provider will be much more professional and in-tune with your needs.


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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Thu May 29, 2014 6:29 pm 
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Thanks Scooter. I was doing research on websites that provide doctor reviews today. I plan to leave reviews on lots of websites! I went to a leading university hospital in Philadelphia, not good.

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Fri May 30, 2014 8:17 am 
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GraciaKai wrote:
Any luck PT?

I saw the endocrinologist on Tuesday and it was a total waste of time. She refused to test me for cortisol, insulin or any of the other thyroid functions. She re-order me a blood test for TSH only which I'm not going to get done. I almost punched her and walked out at one point. When I was asking her about insulin levels being a concern she said "well at your weight...". I wanted to ask for my 40 dollar co-pay back.

A friend of mine did some research for me online and I found another doctor to see who has a lot of really good reviews online and I'm seeing him next week. So hopefully he will be better!

Meanwhile, I'm still feeling totally run down and this brain fog thing is a bisque.


shiitake, GraciaKai...I'm sorry you had such a terrible experience! I hope you have better luck with the new doctor you found. It's bad enough to have to chase down doctors when you're feeling like shiitake, but to have them treat you poorly makes it so much worse. :(

I saw the endocrinologist this past week and he ran a bunch of bloodwork and did a chest x-ray. I didn't have all of the blood results back on Tuesday, but they are ready now and they are going to mail them to me so I can see the rest. The doctor ordered a CT scan, which I have to do on Thursday.

I'm so glad he finally tested my b12, though, since my GP refused to do it unless I was anemic. I'm at 237, which to me is getting pretty low. I read online that people between 200 and 500 can experience deficiency symptoms. Not sure what to do about this other than to take more b12?


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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Fri May 30, 2014 9:10 am 
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Are you taking a chewable b12? Add more nooch to your diet?

Glad to hear your doc was cooperative and helpful!

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Fri May 30, 2014 10:32 am 
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GraciaKai wrote:
Are you taking a chewable b12? Add more nooch to your diet?

Glad to hear your doc was cooperative and helpful!


I'm taking a sublingual b12, but I've admittedly just started taking it regularly. Before I would take it now and then, forget for a while, then remember to take it. Repeat.


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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Mon Nov 03, 2014 9:22 am 
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I finally made an appointment to get my thyroid checked out, but it's not until December 8th. I'm trying not to get my hopes up that they'll find something with an easy solution, but... god, I hope so.

I've been overweight since I was a kid, but I've gone through a couple of major weight losses (and re-gains/partial re-gains), and I think my metabolism is just shot at this point. For the last 3-4 months I've been running nearly every day (usually 2 miles at lunchtime), doing some weight exercises when I get home, eating much healthier (tons of produce, limiting processed foods), and I haven't lost an ounce (I have quite a bit to lose). I don't know what the problem is. Losing weight has always been hard-ish for me, but now it seems like it's impossible, no matter what I do.

I'm not sure what to expect when I go in to talk to the doctor, but I am keeping a food/exercise journal to give him. GraciaKai's experience makes me nervous. If I go to a doctor for help with my weight, and he makes a snide comment about it, I'm not sure I'll be able to handle it.


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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Thu Aug 06, 2015 11:02 am 
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So after a few months of being extremely tired (and putting it down to meds) and having a weight gain with difficulty in losing and maintaining I got some bloods done. Actually, I only got the bloods done because one of my colleagues was practising and I offered her my arm. I had to go to my GP for something else today and the results were in. It had gone out of my mind that I'd even got the bloods taken earlier in the week.

Anyway, turns out I've hypothyroidism. Not sure of my numbers as I was so excited that my weight gain and fatigue were nothing to do with me being a miserable cow. Now that I sit down and read all the symptoms I have a good few of them... skin is even more dry than it normally is, headaches, feeling the cold which I never done before, raynauds, hoarseness, memory impairment.
Oh and now my cholesterol is up too. Just barely and not needing treatment with medication.

After months of trying to make myself not feel exhausted I actually enjoyed the nap I had today and didn't feel guilty about needing the extra sleep.

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Fri Aug 07, 2015 12:22 pm 
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You might mention the Raynauds to your doctor next time you see her. It's a whole separate condition. Though probably not worth doing anything about if it's not severe.

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Fri Aug 07, 2015 3:48 pm 
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It isn't bad. Just mild discolouration at low temperatures. Boyfriend is a doctor so when I got it he wasn't too worried.

I'm wondering now was my depressive episode last summer actually symptoms as at the time I had s couple of minor colds plus a case of bad laryngitis.

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Mon Aug 24, 2015 1:36 am 
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Nooooo!!! First thing to return to normal is my ability to sweat excessively. I just thought that I was tolerating my anti depressants better with the deceased sweating but nope.... The past few days I just need to breath and I am gushing sweat.

Still beyond exhausted and incredibly forgetful. Although last night I actually tidied the countertop in my kitchen. I'm hoping that is a sign of increased energy.

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Wed Aug 10, 2016 7:25 pm 
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Bumping this because I'm having issues that seem hypothyroid-ish and I'm not sure what to do next.

I went to the doctor with a long list of my symptoms, both physical and cognitive. The most debilitating is brain fog and memory problems, but basically every hypothyroid symptom was on there, down to the ridgy nails. I even turned orange at one point (which can happen to anyone due to beta carotene, but is more common in hypothyroidism). She tested my TSH, T4, B12, and D. My TSH was just above 4, while the lab used a reference range going up to 5.5. I forget my T4 but it was in the lower half of the range (around 1.0?). My B12 was 527 and D was 36 (but I had taken large B12 and D supplements a couple of hours before the labwork - my doctor said that couldn't impact the results, but I've seen conflicting info online). Because all of these things were technically within the reference ranges, my doctor said I don't have any thyroid problems or deficiencies and there is nothing more she can test me for, and recommended that I see a psychiatrist.

Based on my research, though, it seems like 4 is a pretty high TSH level - rare in people without thyroid problems, and people with thyroid problems still feel like crepe until their levels are well below that. Plus I'm already doing a lot of the things that they tell thyroid patients to do, which I assume could improve levels of things without completely fixing the illness, just to feel okay enough to get through day to day - I eat super healthily with no gluten, sleep 9 hours per night, even limited my work hours. So given my symptoms, I'm not convinced that I don't have thyroid problems, but I don't want to go to more doctors that tell me I'm fine. (A functional/holistic practitioner is not an option. The few MD/DOs in my area that advertise or are certified as such either don't take insurance or aren't taking new patients, and my insurance doesn't cover NDs at all.)

So in your experience, how likely is it for an endocrinologist to see a TSH of 4 and want to prescribe medication or at least do further testing? I'm not sure whether I should:
1) Make an appointment with an endo/thyroid specialist for a second opinion right away.
2) Order further tests on my own - I can order an antibodies test from one of those online testing companies (you give your sample and get it analyzed at Quest or Labcorp like a normal doctor test) for about $60, or antibodies plus FT3 and FT4 for $75. I assume if your antibodies test is positive you are taken seriously even if your TSH isn't super high yet?
3) Follow the "natural treatment" recommendations and see if I can get better - which I'd never do if I were at a point where conventional medicine mandated treatment, but since conventional medicine possibly won't even acknowledge that I'm sick at this point, maybe it's worth trying.

Any advice from people who have been through this?


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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Wed Aug 10, 2016 8:15 pm 
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yaylentils wrote:
Bumping this because I'm having issues that seem hypothyroid-ish and I'm not sure what to do next.

I went to the doctor with a long list of my symptoms, both physical and cognitive. The most debilitating is brain fog and memory problems, but basically every hypothyroid symptom was on there, down to the ridgy nails. I even turned orange at one point (which can happen to anyone due to beta carotene, but is more common in hypothyroidism). She tested my TSH, T4, B12, and D. My TSH was just above 4, while the lab used a reference range going up to 5.5. I forget my T4 but it was in the lower half of the range (around 1.0?). My B12 was 527 and D was 36 (but I had taken large B12 and D supplements a couple of hours before the labwork - my doctor said that couldn't impact the results, but I've seen conflicting info online). Because all of these things were technically within the reference ranges, my doctor said I don't have any thyroid problems or deficiencies and there is nothing more she can test me for, and recommended that I see a psychiatrist.

Based on my research, though, it seems like 4 is a pretty high TSH level - rare in people without thyroid problems, and people with thyroid problems still feel like crepe until their levels are well below that. Plus I'm already doing a lot of the things that they tell thyroid patients to do, which I assume could improve levels of things without completely fixing the illness, just to feel okay enough to get through day to day - I eat super healthily with no gluten, sleep 9 hours per night, even limited my work hours. So given my symptoms, I'm not convinced that I don't have thyroid problems, but I don't want to go to more doctors that tell me I'm fine. (A functional/holistic practitioner is not an option. The few MD/DOs in my area that advertise or are certified as such either don't take insurance or aren't taking new patients, and my insurance doesn't cover NDs at all.)

So in your experience, how likely is it for an endocrinologist to see a TSH of 4 and want to prescribe medication or at least do further testing? I'm not sure whether I should:
1) Make an appointment with an endo/thyroid specialist for a second opinion right away.
2) Order further tests on my own - I can order an antibodies test from one of those online testing companies (you give your sample and get it analyzed at Quest or Labcorp like a normal doctor test) for about $60, or antibodies plus FT3 and FT4 for $75. I assume if your antibodies test is positive you are taken seriously even if your TSH isn't super high yet?
3) Follow the "natural treatment" recommendations and see if I can get better - which I'd never do if I were at a point where conventional medicine mandated treatment, but since conventional medicine possibly won't even acknowledge that I'm sick at this point, maybe it's worth trying.

Any advice from people who have been through this?


Well this is all kinds of complicated but in reality my hypothyroidism turned out to be Lyme disease. My TSH was just like yours around a 4 or slightly higher. I've been told by several doctors that it can get much worse than that and it isn't that bad at all. I was on levothyroxin and armour thyroid for a few years and even though they brought my TSH down to normal I still didn't feel any better. So I went off of the drugs and my TSH never raised again. I've been off for over a year and my thyroid levels are all still normal. I can't tell you what it is about Lyme disease that mimics thyroid issues but in my case it just does. So all of the treatment I had for my so called hypothyroid issues was pointless and didn't do anything for me.

I'm not saying you have Lyme disease, I'm just pointing out that actually figuring out exactly what is causing your thyroid hormones to spike isn't as cut and dry as calling it a thyroid issue. I would suggest taking the meds for a while, let your levels come down, and then see if you feel better. If the meds work for you then it's probably just a thyroid issue and not anything else underlying.

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Thu Aug 11, 2016 11:41 am 
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Right now I can't even get the meds, because my doctor says that because my levels are "normal", thyroid issues aren't a possibility. Grr.

I'm trying to figure out if seeing an endocrinologist would be more of the same, or actually an open mind to a full review of my symptoms and labs. I'm totally open to it not being a thyroid issue, I just feel like enough evidence is there for a doctor to not dismiss it without further review, know what I mean?


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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Thu Aug 11, 2016 11:44 am 
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I would definitely try an endocrinologist. You might also need to try something like a B-12 test in the absence of taking a supplement.

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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Wed Aug 24, 2016 3:44 pm 
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So I wound up ordering my own antibodies (because I have a family history of autoimmune disease) and Free Ts test. Antibodies were negative. FT4 had gone down but was still in range (1.0, last test was 1.07, the reference range was .8-1.8). FT3 was in the bottom half of the range, but not as low as T4 (3.0).

So if my armchair analysis is correct, I most likely have no autoimmune disease or T3 conversion issues, but could still have a thyroid sluggish enough to cause my symptoms. I'm going to be upping my iodine intake (through seaweed), trying to get my vitamin D back up (it was 36, which seems sub-optimal to deficient depending on which chart you look at), and I'll make an appointment with one of the highly recommended thyroid docs that I can always cancel if I'm able to take care of this myself within the 6 months it will probably take.

I have a question for those of you with thyroid issues on weight control - do you find it beneficial to basically do as much exercise as you can muster the energy for physically, or does that backfire when your thyroid is struggling? I gained 10 lbs since May, despite not making any changes in June and increasing my cardio/decreasing my desserts in July and August. For the whole month of April I basically didn't leave my desk due to a work project, didn't exercise and barely slept, ate processed food, yet didn't gain anything then, so it seems like a hormonal thing. Historically for me, the best way to lose weight is tons of cardio exercise. I cannot lose weight with diet alone, period - I get so hungry I can't focus. I really want to reverse this weight gain, but I'm reading conflicting information about the effect of exercise on cardio hormones.


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 Post subject: Re: Questions About Hypothyroidism
PostPosted: Wed Aug 24, 2016 8:41 pm 
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“most likely no autoimmune disease” is not the same as negative dx for autoimmune. It is a crucial distinction. With hashi’s, extra iodine is anathema.

I don’t know where you are, but it is important to find a doctor who will test you accurately and to step away from the armchair MDing.

With regard to exercise: I have hashi’s and I am exhausted a lot but I also have other hormone issues. I just push through and then take extra time to recover. I track everything that I eat, also.

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