Doctor only did TSH count

Hi All,

I'm new to here. I had a blood test on Friday. My cholesterol was 6.9 and gone up from 4.5 in 6 weeks and my TSH count is 3.5. I am in agony with muscles pain. I drove for 3 hours on Sunday and now have sharp muscle pain in my chest and back and can't put my bra on without screaming out in pain. My muscles have been aching since I started taking Levothyroxine in August. I shuffle around like an old woman in her 80's. I've just seen my GP and she is mystified and doesn't think it's anything to do with my hypothyroidism as my TSH count is 3.5 and I'm on 100mg of Levothyroxine. However I have convinced her to do a full thyroid blood test to check FT3 & 4.

Does a NHS blood check do all 6 tests that I've been reading about?

Am I going crazy or is it something else that is making me ill?

Frustrated with it all.

Jules 😤

3 Replies

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  • GP is 'mystified' not as mystified as her patient who doesn't expect to feel worse and be crippled with pain. All your symptoms appear to be under-treated hypothyroid.

    Your GP believes that as soon as the TSH is somewhere within the range the patient shouldn't get an increase in hormones but she is unaware that for us to feel reasonable TSH has to be 1 or lower. It's not the doctor's fault - it's how they are taught/trained.

    I shall give you a link and you can tick off your symptoms. Most important to you at present is your pain and I can sympathise with you as I also couldn't understand why I felt worse on hormone replacement than before being diagnosed.

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

    Widespread pain is also another and it may be due to you not being on sufficient thyroid hormones yet. It is usual to begin on 50mcg of levo and it is increased by 25mcg about every six weeks until your TSH is low and you feel much better. Levothyroxine is also called T4. T4 is inactive and should converts to sufficient T3 (liothyronine). T3 is the only active hormone and is required in the billions of our T3 receptor cells so levothyroxine has to be sufficient to do so. It would be good if your GP would include Free T3 and Free T4 in your next blood test. Few will and some labs wont if TSH is anywhere in the'range'.

    Bloods should be tested at the very earliest possible, fasting (you can drink water). Allow 24 hours gap between your last dose of levo and the test and take afterwards. Always get a print-out of your results with the ranges (we are entitled but some surgeries charge a small sum for paper/ink).

    Ask for B12, Vit D, iron, ferritin and folate to be tested as well.

    Cholesterol will reduce as levothyroxine is increased. Statins should be avoided.

    Levothyroxine should be taken first thing on an empty stomach with one glass of water and wait about an hour before eating. Or, at bedtime if you allow about 3 hours since last meal.

  • Welcome to the forum, NotRomeo.

    You are under medicated to have TSH 3.5 while taking Levothyroxine. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    FT3 is rarely tested in primary care unless TSH is <0.03. Hopefully your GP will test TSH, FT4 and thyroid peroxidase antibodies. What six thyroid tests have you been reading about?

    Hypothyroid patients are often low or deficient in vitamins and minerals so it is worth asking your GP to test ferritin, vitamin D, B12 and folate as deficiency can cause musculoskeletal pain.

    Supplementing magnesium and using magnesium oil spray and Epsom salt baths can relax muscles and promote sleep.

  • Most people on levo need low TSH around (or even slightly below) 1 to be adequately treated.

    Dr Toft is a past president of the British Thyroid Association and leading endocrinologist, and this is what he wrote in a Pulse Online magazine article:

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

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

    NHS rarely checks TPO and almost never checks TG, apparently thinking it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    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...

    Blue Horizon - Thyroid plus eleven tests all these. £99

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) 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

    If you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies too. Selenium supplements can help improve conversion of T4 to T3 and reduce antibodies

    You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

    Last suggestion - do you always ensure you take Levo on an empty stomach and then nothing apart from water for at least an hour after. Many take on waking up, but lots of us find taking at bedtime more convenient and recent research suggests it may be more effective.

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