Advice for Newbie?

I've been unwell for many years. It came to a head recently and the gp did full bloods.

I went back in yesterday with my sinuses being a problem, and the locum randomly threw in that my blood tests were back and showed I had an underactive thyroid. She said I was to come back in three months for more blood tests. I was clueless. So I Googled. Now I'm worried about waiting three months.

My main issues (may or may not be linked) are severe anxiety, severe muscle pains mostly back and shoulders, tiredness, lack of motivation, clumsiness, numb fingers, cold, recurring sinus infections, recurring utis, palpitations, irregular periods, pains to do with that, chronic ibs and newly discovered lactose intolerance.

Life is kinda tough atm

How many of those may be linked to this, and what should I do next? I've been plagued with "flu" on and off for the last 6wks. I'm floored.

9 Replies

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  • Welcome to the forum, Allieok.

    It's standard practice to retest the first abnormal TSH results 2-3 months later to rule out non-thyroidal illness like a virus or infection raising TSH.

    Symptoms of hypothyroidism thyroiduk.org.uk/tuk/about_...

    Arrange your next blood test as an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

    thyroiduk.org.uk/tuk/diagno...

    thyroiduk.org.uk/tuk/about_...

  • So is it possible that the flu virus caused the levels to look like thyroid issues?

    Obviously I still have physical problems going on, but this is scaring me

  • Allieok,

    An virus can elevate TSH, yes.

    If it is a virus it is expected to resolve within 3 months. If hypothyroidism is confirmed you will be given Levothyroxine to replace the low thyroid hormone.

  • All can be linked. So you have probably have hypothyroidism which is (has been) slowly making you feel not so well. It doesn't happen all at once, it is a slow and gradual progress until the doctor finally diagnosis us. That is only the beginning but as you've been newly diagnosed and you have joined the forum the members are very supportive. You will eventually learn enough to know what should be expected with thyroid hormone replacements, the aim is to feel well but unfortunately doctors aren't always the best altough some may be.

    Next time, ask for thyroid antibodies to be tested. If these are present you woud have an Autoimmune Thyroid Disease called Hashimoto's which is the commonest cause of hypothyroidism. The antibodies attack the gland until it sends out no more hormones. Replacement hormone is levothyroxine (also known as T4) and it has to convert to liothyronine (T3) which is the only active thyroid hormone required in our billions of receptor cells, particularly for the heart and brain. This is a list of symptoms.

    thyroiduk.org.uk/tuk/about_...

    First things first. All blood tests for your thyroid hormones have to be at the very earliest, fasting (you can drink water). Also allow 24 hours gap between your last dose of levo and the test and take it afterwards. This allows the TSH (the only thing doctors take notice of) to be at its highest as doctors are apt to adjust (wrongly) if the TSH is low.

    Always get a print-out from the surgery of your results with the ranges. Ranges are important as labs differ and it makes it easier to comment.

    You should have a test about every six weeks with an increase of 25mcg of levo until you feel well with relief of all symptoms (that's the ideal). Sometimes some of us find that a little difficult.

    Ask GP to test B12, Vit D, iron, ferritin and folate at the next test. We are usually deficient and everything needs to be optimal, not middle or lower but near top. Except TSH which should be 1 or lower.

    The attack of antibodies on the gland can be reduced by going gluten-free.

  • It seems really cruel, but the thyroid is very slow to recover so its not unreasonable from the doctor's point of view to wait a couple of months. And nothing drastic will happen, you will just take a bit longer to recover. But on the other hand treating you with thyroid hormone if you don't need it is not good, and will mask the real cause if not thyroid.

    An underactive thyroid is nothing to be scared of. It is one of the easiest things to treat, and is straightforward in the majority of cases. Remember that the people hanging around on a board like this are the ones who continue to have problems, we are not representative of the majority.

  • These symptoms can also be related to gluten intolerance. Worth weaning off it over a couple of weeks to see if your symptoms improve.

  • You could go back to GP, saying how grim you feel. Say you understand that you need to wait 2-3 months for thyroid re-test, but could you meanwhile get levels of vitamin d, b12, folate and ferritin checked. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    Also ask if Thyroid antibodies could be checked There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both antibodies are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

    TPO is rarely checked and TG almost never checked. More common to have high TPO or high TPO AND high TG, but negative TPO and raised TG is possible, though rarer.

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results.

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Special offer at moment

    thyroiduk.org.uk/medichecks

    Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

  • go back to your gp surgury and insist on a copy of your blood test results (its your legal right )and post them here

    waiting 3 months in your state is not funny

    as advised by others organise next test for early morning and fasting

    when you eventually get thyroid meds remember Never never take thyroid meds in the 24 hrs before a test

  • So my tsh is 5.71, receptionist said up to 5 is fine so may well be below this next time and not be diagnosed

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