Went to see hospital Endocrine doc today feeling pretty fed up now. Just a case of take 100m levothyroxine and it could be months before I see an improvement. Just felt shrugged off like just live with it. Was referred as TS4 was 6 TSH is massive 95 should only be up to 4.5? antibodies 550 when they should only be max 50 doc says I must have had a bug which has caused immune system to attack the thyroid. Have felt like body is shutting down. Common colds turn into full blown flu. Pain all over the place. Is it worth going private? Can they do anything else? Months of this would be a nightmare!

6 Replies

  • Hello Anorton,

    Welcome to our forum and sorry to hear that you are not feeling well.

    Your TSH is very high and most people medicated on Levothyroxine would function best with a TSH of 1.0 or below and T4 & T3 in the upper quadrant of range.

    You don't say how long you have been medicated but a big hormone imbalance can take many months to get better. Our bodies will only accept very small increments of thyroid hormone replacement medication about every six weeks and these increments should continue until your TSH has fallen to a level where your symptoms are being managed.

    Antibodies would indicate Hashimotos Thyroiditis prevalent in many who suffer from hypothyroidism. A high count may contribute to your symptoms and needs to be lowered. Many have found eaten a gluten free diet to be hugely beneficial in reducing inflammation and healing any gut issues.

    People with thyroid issues are often deficient in Vit B12, Vit D, Folate and Ferritin. It is advisable to have these tested in order to address any deficiencies as optimum levels are required for thyroid med absorption in the body.

    If you post your thyroid hormone test and antibodies result, complete with ranges (numbers in brackets), members will comment and advise.


  • Many thanks I will ask my Gp for a printout - they had just given me those numbers if Ts4 being 6, TSH at 95 etc true enough they did give me the results same day of test and phoned me at home. Had another blood text today so will see what that shows and post the results. Thanks

  • My TSH was 102 and within six weeks on levothyroxine was down to 3 and six weeks later 0.33 but it has taken a year to begin to feel improved but not 100%,

    So good luck but there is no quick fix.

  • Anorton, it's a good idea to get a printout of results with the lab ref ranges (figures in brackets after the results) to monitor your progress but there is absolutely no doubt you are hypothyroid. TSH>10 and FT4 below range are considered to be overtly hypothyroid.

    When you are due your next blood test ask for ferritin, vitamin D, B12 and folate to be tested. Deficient/low levels are common in hypothyroid patients and cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

  • The same happened to me when my TSH was over 100 - the doctor called me at home about 5 hours after they'd taken my blood sample. That was almost a year ago and I've still not recovered completely. Afraid it is just really slow going getting better, especially when you've been profoundly hypothyroid with very low T4 and very high TSH. But you will definitely improve once you've been on treatment for a while!

  • Welcome to the forum, Anorton.

    Positive antibodies mean you have autoimmune thyroid disease (Hashimoto's). Hashimoto's attacks the thyroid gland until it can no longer produce sufficient thyroid hormone and is the cause of 90% of hypothyroidism. Gluten-free diet can be helpful in reducing Hashi flares and antibodies.

    There's no point in going private at this stage, a private endo is unlikely to alter your NHS endo's treatment and your endo has started you on the maximum recommended starting dose of 100mcg. It takes 7-8 days to absorb Levothyroxine before it starts working and up to six weeks to feel the full impact of a dose. You will feel some improvement as your TSH drops and your FT4 and FT3 rise but it will take 6-12 months for all of your symptoms to completely resolve.

    You should have a thyroid blood test in 6-8 weeks to check levels as you may need a dose increase. Dose adjustments are usually in 25mcg increments every 6-8 weeks until TSH is just above or below 1.0.

    For maximum absorption take Levothyroxine with water on an empty stomach ie one hour before, or two hours after, food and drink, 2 hours away from other medication and supplements and, 4 hours away from iron, calcium, vitamin D and ostrogen.




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