New and lots of questions

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went to er thinking i had kidney stones, while they were doing tests to check for that they found leisions in my pelvis my spine my spleen and my ovary. during my labs my tsh value was 7.780

I have been having a hard time swallowing for more than a year and just always wrote that off as allergies since we live in ky. 

 i have been sent for more mri and a mamogram and more blood work and have not been given any diagnosis other than they say i have a bone disease for sure, i am the type of person that likes to learn when i dont know what i am being told or what i am reading. What should i be trying to learn about my results at this point to make things more understandable on my end. Oh yeah my daughter is asking if a thyroid can cause all the leisions on the rest of my body that they have found so far. Lots of questions and no answers yet because we have only been on this journey for two weeks and have not been given any solid results as of yet other than i am now on vitamin d because my d levels were drastically low. 

Any suggestions on where i should start for learning from a -patients standpoint.

\treat me like im two and point me in the right direction for things to read for a better understanding of what is going on. lol

Thank you 

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  • Posted


    Ok, just to start... you've got high TSH, difficulty swallowing, low vitamin D... all common symptoms of thyroid disease. It could be that you have advanced thyroid disease.  I'm guessing you probably have constipation, thinning brittle hair, dry skin, difficulty sleeping? More classic hypothyroid symptoms.

    Your thyroid gland controls the metabolism for your entire body, along with other endocrine organs- pancreas, pituitary, adrenals, sex organs. When your thyroid gland doesn't work properly (low thyroxin production / hypothyroid, in your case), the body can't maintain body functions and prioritizes accordingly, shutting down all but the most vital functions. In addition, thyroid disease is autoimmune, so you've got immune dysfunction. No surprise you feel crappy.

    The exact cause of thyroid is elusive. However, known causes of hypothyroid disease are exposure to chemicals and radiation, particularly heavy metals such as bromine and mercury. Neck injuries can also contribute to thyroid disease.

    So with your metabolism slowed and your immune system down, it isn't surprising that you feel like you're chasing your tail trying to find the root cause. It's toxicity and autoimmune disease.  It's likely your liver is sluggish due to hypothyroid, slowing the elimination of toxins, worsening things.

    Typical treatment for thyroid disease is hormone replacement therapy, but can include radiation and surgery. 

    You need to treat your thyroid first. If you want to go a holistic route, treat your immune system. But western medicine doesn't have a way to treat your immune system, so you'll need to do some research.

    Print this out and read as much of the posts here that you can. They will help you learn from other peoples' struggles and help you head off many problems before they happen. 

    From your description, you are in a health crisis. You need to put yourself first for now. 

    There are many things you can do to help your own health. Folks here will help with diet, supplements, etc.

    Hope you feel better soon.

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  • Posted

    Radiation treatment is for hyperthyroid. They use this method the destroys "some" of the thyroid gland to reduce thyroxin production. The drawback of this treatment is that there's no way to do this precisely, so  people generally end up hypothyroid for life: they trade hypo for hyper. Not much of a solution since you trade one problem for another.

    There's a radioisotope iodine uptake test that looks at the activity of your thyroid gland. The idea of this is to see if the thyroid gland metabolism is rapid based on the resultant radioactivity of your thyroid gland. The drawback of this test is that you expose yourself to radioactivity, and your thyroid, which if it's not working right, only makes you more hypothyroid. 

    One of the confusing aspects of thyroid disease is that high TSH indicates low thyroxin production / hypothyroidism. TSH is thyroid stimulation hormone, produced by the pituitary. The idea is that if your TSH is elevated, it's because your brain and pituitary think that your thyroxin levels are low... so your pituitary makes more TSH, trying to tell your thyroid to make more thyroxin. 

    To make matters worse, the TSH test is only useful if it shows elevated, which yours does. So you know you're hypothyroid. Probably Hashimotos disease. You should probably see an endocrinologist and get your T3, T4 tested, possibly rT3, and antibody tests. Since you have funny growths elsewhere, you probably should get an ultrasound on your thyroid to check for goiter or cysts indicating Hashimotos.  

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    • Posted

      Hi I’m not the poster.  I only asked because you mentioned radiation treatment but the poster seems to be under. My auntie had radiation treatment. She is one of the lucky ones and it has changed her life for the better. Also have a friend who had it who has had a positive outcome. It’s a crazy world amongst thyroid issues
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    • Posted

      Hi Jennifer, thanks for posting. I've only met people who ended up severely hypo following radiation. They all had horrible problems.

      I'd be interested in hearing what sort of other outcomes you've seen.

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  • Posted

    I’m sorry you are going through all this. Ok so your TSH of 7 is what is called ‘out of range.’ You will need to ask doctor for the ranges but it is quite high. Did you have any other thyroid bloods done? Others include T4, T3, RT3 and thyroid antibodies. They usually carry out TSH, T4 and antibodies when first testing someone. This gives a bigger picture into what is going on regarding thyroid issues. 

    The TSH is what tells your thyroid how much t4 to produce. (It is normal to have slight changes in tsh numbers on a daily basis due to diet, sleep, stress levels). The T4 is then converted into T3 which is needed by cells, tissue around the body. If these do not receive the right amount of T3, whether it is too low or high, this is when the body starts to struggle and issues arise. 

    People usually feel well with no symptoms with a tsh level of 2.0 or below so I’d be asking them about thyroid treatment as you have quite a high tsh so you are under active.  HyPOactive.

    Surgery is considered for people who have nodules on their thyroid, or it is enlarged and causing severe symptoms or thyroid cancer. But please don’t worry about this. Just ask if you can be referred to have a thyroid ultrascan because of your struggle with swallowing. I thought mine was enlarged, had a scan and it wasn’t and had no nodules. Endocrinologist said the symptoms of mine feeling like it was, were probably just my thyroid struggling to work.

    As I said you are currently under, hyPO. 

    HyPERthyroidism without treatment can cause changes to bone density (bone loss) and cause osteoporosis .

    You can become hyper if your thyroid medication is too high.

    If they give you thyroid medication, they will usually start you on a small dose. Some people feel worse before they feel better. They then have repeat bloods every 6 weeks to see if the treatment is working and adjust your dosage accordingly.

    If you are having other scans/ tests done, they are probably waiting to have a full picture of what is going on .

    I hope this has helped  alongside Catherine’s answer. And as Catherine has said, read all the invaluable information given on here 

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  • Posted

    since i am new to these forums i dont know how to answer back to everyone, I go back to see my doc in the morning. at the moment we know i have high tsh, some difficulty swallowing, i have fatigue, they have found leisions in my pelvis,spleen,ovary,and spine. I have had a repeat ct of my pelvis and a mamogram done friday. Now they are wanting to do a complete thyroid work up. All of this has come to light since november 28th when i thought i was having kidney stones and went to the er to find out it wasnt kidney stones but a kidney infection. 

    they have since started me on 50,000 units of vitamin d since my d was very low, they put me on meloxicam for the pain, other than that its a hurry up and wait situation because we are at the very begining of learning there is an issue.just finding it hard to keep up with all the words they throw out there, testing for possible malignancies because of the leisions. Its crazy how things chance in a blink of an eye. 

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