High TSH 71 and T4 12.5

Fed up.

Worried.

18 months ago I had a BH blood test and showed a TSH of 28. GP didn't like the private test so had a further NHS test which contradicted with a TSH of only 1.0.

Told to stay on 75mcgs Levo. I have forgotten what it's like to feel well so can't really say how actually 'bad' my symptoms are- apart from some weight gain, I haven't noticed any clear worsening. Basically I have grown used to having potentially under medicated hypothyroidism.

I have increased my dose to 100mcgs using Eltroxin brought on line.

I did go to my GP recently and asked for a prescription as it was becoming harder to get Levo on line.

Had blood result today and GP called - my TSH is 71......my T4 is 12.5 - she said this is normal range and asked if the meds I had used were genuine? I think so but I had run out of them for a week before the test.

GP is now herself increasing me to 100mcgs and will leave a script and retest in 4 weeks.

Basically, the GP practice simply won't test for anything other than TSH and have been obstructive even in giving me a suitable dose- they have refused to accept my BH test result and retested until they got a low reading!

Now - I am sky high, feel crap and still they will only give me 100mcgs.

GP feels the internet meds are of questionable quality or are out of date and reduced effectiveness....IF they had taken my BH test on board to start with I wouldn't have been driven to self medicate.

No good asking a different GP.. they all repeat each other ....how long will it take to get my TSH back to a reasonable level?

I have read now about high TSH and 'normal' T4 and am imagining I have a pituitary tumour - at the very least and am in a panic...

Any advice anyone please

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13 Replies

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  • Luley,

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

    It takes 7-10 days for a dose increase to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose increase. Dose should be increased every six weeks at 25mcg increments until your TSH is 1.0 or lower.

    For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

  • unbelievable ...can only wish your GP was suffering such a callous attitude

    i suggest you would be better to buy NDT not only are there safe reliable sources (pm me for info) and the bonus could well be that all your symptoms will disapear bit by bit which often no amount of levo will acheive

  • Thanks - both.

    I have tried NDT but experienced quite a bit of 'hype' with what I assume must be the T3 component? I also tried T3 in addition to Levo but again found even on a small dose that I became sleepless and racing of heart.... horrible feeling so stuck with the Levo.

    Last year - 12 moths ago I saw a private GP who was unhappy with a TSH of 28 ( that my GP had dismissed and retested) and he increased me to 125 a day with 150 one day a week.... this for the first time ever controlled my TSH down to 1.0 BUT my Free T4 shot to 28 ( Normal range >22) so I decreased again ... back to 75 Mugs for one week and thereafter to 100...... NOW this! NHS or privately - I seem to not be in control :(

  • I believe it's common to require a freeT4 over range in order to get other numbers right, while on Levothyroxine only.

  • if you felt well with a free T4 of 28 but not when its 22 sounds like you need TSH to be 1.0 and free T4 of 28

    did you have the blood drawn early morning

    fasting drinking only water

    and not taking any levo in previous 24 hours

    maybe you just have to manipulate things to treat yourself without hindrance of doctors

  • Thanks - yes blood taken first thing etc... Private Doc got jittery about me going into Atrial fib so told me to cut it down! Just a no win kind of juggle!

  • well being hypothyroid and poorly treated wont do you any good either

    was there any tiny tremor in your hands if you hold your arms out forward ?

  • Not a bit! I hadn't ever felt so good.....the only thing I have found less tha. Good and in contrast to most people, was T3..... even the smallest dose made me very wired- shame as I have plenty of that from Greece!

  • What does that mean rfu? Does a tremor mean hyper or hypo?

  • a fine tremor in your hands if you hold arms out forward = hyperthyroid/overactive

  • Thanks, I was given that test many times by my "stupid" Endo many years ago. It is terrifying that my dose of (then) Levo hung on such a primitive test. It is a good indicator but she needed a few more blood tests before she concluded my dose was too high. I never had a tremor BTW.

  • Get your vitamin D, folate, ferritin and B12 tested.

    If these are low you can't use the thyroid hormones

    Have you been tested for thyroid antibodies? If these are high you have Hashimotos.

  • Hi Iuley, I'd recommend writing to your GP. I struggled for years and then wrote a letter politely but clearly outlining my GP's responsibility for my health and that in refusing to refer me she was keeping me unwell with other problems occurring as a consequence. You don't need to mention it but they are responsible for our financial costs where we need treatment for a problem arising as a consequence of not having been correctly medicated (where that is apparent). Her attitude to me has been completely different since I sent the letter, courteous and helpful.

    Good luck and I hope you feel better soon.

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