Your opinion please

I have relocated to a new area, and have been given a full blood count, by my new GP's, this included my thyroid. I have resisted getting blood tests done for a few years, as I always get told, they are going to reduce my Levothyroxine, as I am taking too much. I had the test Monday, Tuesday lunchtime I get the phone call, to tell me....... no suprise they need to reduce it! I am on 125mgs Levo, am still gaining weight, extremely conspitated (3 max strength Senokot have no effect!) feel cold and crabby most of the time!

The result TSH only tested! Serum TSH Level 0.02 mu/L compared to 0.27-4.2 mu/L I agree the result looks low, but is anyone else feeling well with a result like this, and have you been bullied to reducing your Levo?

Many thanks

3 Replies

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  • Can't really tell without the Ft3, but the full replacement dose for people producing no natural hormone is 1.7 mcg per kilo lean body mass (France)

    I am well on that, which for me is 150mcg. As you are symptomatic, push for Ft3 and Ft4 before ...ahem.... taking more.

    Also how are your vitamin levels? I'm sure someone will be along in a minute to give you the optimum levels of these.

    Anyone try to bully me? Nope, but i once went on an assertiveness course. When i booked the time off (paid) my boss said i needed one as badly as Attila the Hun. I agreed, and went on the course. What i took home from that was be polite but never back down below your base position, which should be better than where you are when you start negotiations.

    So, your base position is FULL blood tests, and an increase to full replacement dose, with T3 added of needed based on your FULL bloods and symptoms.

    Start by asking for a referral to a specific consultant endo, and oh, anything else you think might be nice. Be prepared to give that away ;)

  • They are more concerned with the TSH result than any of the clinical symptoms we have.

    If you feel reasonably well - don't change your dose. It's a waste of your time. They haven't a clue how metabolism issues affect us and you still have clinical symptoms.

    In my opinion they would be wiser to use the protocol this doctor did and how doctors treated their patients before the blood tests:-

    web.archive.org/web/2010103...

    and an excerpt from further down the page in the above link:

    Dr. Lowe: First I suggest that you ask your doctor to question the scientific basis of the endocrinologists’ notion of "fine tuning" by TSH and thyroid hormone levels. If he does, he’ll learn that the changes he sees in your TSH and thyroid hormone levels are probably nothing more than natural variations in the levels. He would probably see the same variations if he always kept your thyroid hormone dose the same. I’ll briefly review some of the evidence that your doctor should read.

    TSH levels don’t significantly correlate day-to-day[1] or week-to-week.[2] One research group measured the TSH and free T3 and free T4 levels of ten normal young men.[3] When they measured the levels every 30 minutes for 24 hours, they found that the hormone levels were lower during the day and higher at night. During the day, the free T3 was 15% lower, the free T4 was 7% lower, and the TSH was 140% lower. When the researchers measured the hormone levels every five minutes for six to seven hours (7 PM-to-11 PM), the levels varied every thirty minutes. The TSH level varied 13%, the free T3 15%, and the free T4 11%"

    Did you get the earliest possible appointment for your blood test and fast? Did you leave about 24 hours before your dose of levo and the blood test? This helps to keep our TSH at its highest point as they are obsessive about the TSH believing a very low TSH causes osteo etc. They never give a thought that we would develop heart disease or worse due to low a dose of hormones or if we're not converting to sufficient T3 to drive our metabolism.

  • You really need to get a full thyroid function test. Low TSH on its own isn't conclusive evidence of being overdosed. For that kind of proof they would need to test Free T3 and Free T4.

    If your doctor refuses to agree to a full thyroid function test you could pay for your own.

    There was a time when doctors would occasionally get TSH, Free T4 and Free T3 done. (I got it done by the NHS once - in 2013 - lucky me!)

    But then the rules changed so that TSH was done. If it was under or over range then Free T4 would be done. If Free T4 was under or over the range then Free T3 would be done.

    But now the rules seem to have changed yet again, and in many areas they have given up all pretence of trying to investigate thyroid problems and they only do TSH and make decisions based on that.

    For more info on private testing :

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

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