Don't Know What Is Going On

Posted , 5 users are following.

My GP referred me to a head and neck consultant because of a pain in my neck and jaw and I then had an MRI scan followed by an ultrasound sound scan, which consultant had fast tracked. The radiologist said there was no malignancy but that I had multiple thyroid nodules and one which went down behind my collarbone. I am 80 and feel terrible; piling weight on despite eating only twice a day and then only frugally. My hair has become thin and my eyebrows have almost disappeared. However, over a period of years my thyroid blood tests have come back either borderline high or normal so no action has been taken.  Some ten years ago I did see an endocrinologist but he did nothing. My new consultant told me that my readings were underactive so I don't know where I am. It was only after changing GP practice that further investigations were ordered. This head and neck man has done more than anyone in the past and I am due to see him again next month. meanwhile, I don't know what to think. Am I hypo or hyper and why do the results seem to change? Any advice would be much appreciated.

0 likes, 11 replies

11 Replies

  • Posted

    Can you put your blood test results on here please along with ranges (figures in brackets) it would give a better idea which way you are? X
    • Posted

      Thank you for your reply, worrygirl but I have never been given a printout of my results. All I have been told after first two tests is that they were borderline hyper and then just a few weeks ago my new consultant said they were hypo
    • Posted

      You need to ask for a printout from your GP. They can't refuse you, it's your entitlement, they can only ask for a nominal amount to cover paper and ink used. My G.P. doesn't charge, yours may not either.

      Have you joined the Healthunlocked website, it is really good and a lot more helpful people than me? It is recognised by the Thyroid foundation. Have a look and see what you think. X

  • Posted

    Based on the information in your post, you are almost certainly hypothyroid. The Usual test for thyroid problems is called TSH. Any value much above 4 is an indication of hypothyroidism. The higher the value, the lower the thyroid function. Maybe when your doc told you you were borderline high he meant high TSH and confused you?
    • Posted

      Thank you, Dave All the info I am receiving from here is helpful and gives me questions to ask both consultant and GP.
  • Posted

    Hello Shaxta, it often takes years or even decades for patients to get a diagnosis and treatment, so what you're experiencing isn't unusual.

    The scan showing cysts, generally results in a diagnosis of Hashimoto's, which is hypothyroid autoimmune disease. Thyroid disease can take years to develop and as it progresses, function may increase or decrease, and in fact, may even go hyperthyroid at some points as the body struggles to regulate.

    In addition, TSH readings are the initial screening method, and can often show well in range even with advanced thyroid disease. I can assure you that advanced thyroid disease can occur with a TSH as low as 2. Since TSH measures the Thyroid Stimulating Hormone produced by your pituitary, this tells you what your brain thinks it should do. Meaning, if your TSH is elevated, you are hypothyroid, because your brain is trying harder to stimulate your thyroid to produce more thyroxin. Unfortunately, TSH levels tell you nothing about your thyroxin levels. And in advanced thyroid disease, the brain often gives up the unsuccessful battle of trying to stimulate the thyroid, and TAH levels can drop down to slightly elevated (2). The TSH "normal range is also very broad and many people with hypothyroidism have severe symptoms above a TSH of 2. My experience is that a TSH of 2 is enough to suggest a full thyroid panel. So you need to get a full thyroid blood panel done. The fact that you have symptoms and cysts means you have hypothyroid disease. Your symptoms are classic hypothyroid, likely Hashimoto's.

    Its really a very complex feedback loop that can go wrong in many places. In particular, heavy metal toxicity (Mercury or bromine in particular) can result in hypothyroidism, which doesn't necessarily result in a spiked TSH. 

    Hope that hat helps explain things.

    • Posted

      Thank you MtView Catherine For your very detailed information. I have suffered feeling ill for quite a few years but was always told I was OK as TSH was normal. After a test a few years ago I was then told i was borderline hyper but what has been happening to me seemed more like Hypo and my consultant told me last month that my test was Hypo. Today, I have requested a Thyroid Plus Ten test from Blue Horizon so that should give me a more thorough test than I would get from the NHS which only seems to do TSH. I'm sure you will agree that constantly being told you are OK is most frustrating when one feels awful. The best thing I did was to change GP practice as this GP has actually taken things on board and started investigations.

    • Posted

      Sounds like you have a good plan. You probably should also see an endocrinologist.

      There are tons of supplements recommended for thyroid conditions. The ones I've found most helpful are essential amino acids, liquid chlorophyll from mulberry leaves, and turmeric capsules. Each of these treats a different aspect of autoimmune disease. You may find them to offer some relief. I'm happy to pm you with the sources for amino acids and chlorophyll that I've found to be good, though turmeric can be found anywhere.

    • Posted

      Thank you MtViewCatherine

      I would be happy to have a list of the amino acids and chlorophyll. I already take Turmeric with oil and black pepper in Golden Paste with which I make a drink and also put it on some foods. By the way; how does one do a PM on this site?

    • Posted

      If you have it automatically shoot you an email with updates, it should send you an email when you receive an email with a link to the private message section. 

      If you want to send a message, click on the user's name and select the message box. 

      If yoi you want to go to your messages from here, look on the upper right of your screen. You should see a link to check your messages.

  • Posted

    A blood test for your thyroid, which is the TSH test will be considered underactive as your levels raise higher.. so you are not and have never been hyperthyroid.  When your doctor said that your blood test were borderline high.. he meant borderline hypothyroidism.  When the other doctor said that your are underactive.. it means hypothyroidism.  I know this is confusing..   Underactive means hypothyroidism, and the higher your lab work is, the more hypothyroid.   For hyperthyrodism, your blood work would be on the low end of the range, and is considered overactive.  It really is opposite and can be confusing.  Hypothyrodism=higher TSH/underactive Hyperthyrodism=lower TSH/overactive.  I hope this helps.  Although it is possible to shift back and forth from hypo to hyper in the earlier stages of Hashimoto's, I don't think this is your case, as each doctor you saw, meant that you are close to or have hypothyroidism, and never stated you have hyperthyrodism. 

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