Permanently suppressed TSH? BEWARE!

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Here's why...

I've struggled through the last 20 years; needing extra thyroxine just to be able to 'not be a zombie' (which meant permanently suppressed TSH). As a result I now have a number of rare autoimmune medical conditions, allergies and intolerances.

I post this as a warning to others: beware permanently suppressed TSH, more thyroxine is not the answer - there is something else wrong!! In my case it was not converting T4 to T3. If this sounds familiar, take action, get it investigated. Try NDT (natural desiccated thyroid) - it's the answer for some. Make an appointment with each doctor at the surgery until you find one who will listen. I take a one sided sheet of paper titled: 'briefing note for consultation with doctor xxx on ddmmyy' and starting with a section labelled 'objectives from consultation'. Followed by a section labelled 'supporting information'. Keep it succinct. At the beginning of the consultation say: 'as we have limited time would you mind reading this as it will help us get the best out of this consultation'. Take two copies, one for you, one for the doctor to keep. All the best.

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  • Posted

    Hi Barbara, does that also apply to me? I know I don't have any TSH, as my pituitary is not producing it. I take Levothyroxine, but feel it doesn't suit me, as I have so many of the underactive thyroid symptoms (as listed on the Thyroid UK site), even though my thyroid bloods read 'ok'.

    I don't really know how to handle this with my new Endo, as I would like to try ndt, in the hope of feeling a bit better.

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    • Posted

      Hi gill, I'm not medically qualified so can't answer for sure. However, still having hypothyroid symptoms with bloods in range is identical to me except my thyroid doesn't produce any thyroid hormones. TSH = 170 when I was diagnosed in May 1991. Net effect for both of us is the same: no thyroid hormones produced, however it doesn't automatically follow that this would mean you have problems converting. They key here is that you are still having symptoms despite being in range. This what I have done since January to get to where I am now:

      1. Registered on tpauk . org website (no spaces)

      2. Explored 'treasure chest'

      3

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    • Posted

      3. Read dr kendrick article

      4. Found list of private endocrinologists who would prescribe NDT

      5. Paid to see one

      6. Got prescribed Nature-Throid. But found I was allergic to it. (Likely candidate: maize starch aka corn)

      7. Tried liquid thyroxine. Found I was allergic to it.

      8. Didn't take thyroid hormone for 8 days

      9. Had blood test. Got lucky. Result: T4 in range. T3 low. Concluded not converting T4 to T3.

      10. Used tpauk to search for thyroid medication without fillers.

      11. Spoke to private encrinologist who sent me prescription for WP-Throid. Whilst waiting to find out if she would..,

      12. I found ThyroGold which is a 'nutritional supplement' (but really an NDT in disguise), ordered smallest bottle of smallest dose £35 to UK incl p&p.

      13. Read about dosing info on Dr C Lowe's website. Read the rest of the site whilst I was sbout it.

      14. Got WP-Throid prescription. Cost would be about £90 for 1 month's supply as needed it in half grain tablets to start on a low dose and increase it slowly.

      15. Didn't get WP-Throid as already on ThyroGold and it was working.

      16. Still trying to find correct dose of ThyroGold. 2x300mg a day was too much. Think 2x150mg is too little.

      17. Had blood test today (24 Aug 2015). Will find out results on Wed. My GP requests T3 and T4 so I should be able to tell if too low (I hope). Feels too low.

      Note: I have kept my GP in the loop throughout. I've been seeing him every 2-3 weeks to discuss my latest findings and get his input. He's been treating me since 1993 and he was the one that identified the endocrinologist that I now see privately when she was working in the NHS.

      I realise that this is a roundabout way if answering your question but I thought it might help you to see what I'd done so you could work out what best to do for your situation. Good luck!

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    • Posted

      Thankyou so much, Barbara, for putting that all down for me. I assume then that you are in the UK, going on what you said about postage, and generally your wording? I only ask because often there's comments on here from USA, say, and the system doesn't work in the same way here in the UK.

      Really appreciate this, thankyou. Gill

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    • Posted

      PMs aren't working on my phone. I'll try later. If you PM me I might be able to reply.
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    • Posted

      Big hint...look on tpauk and register and access their treasure chest. smile

      By the way, have you got your patient forums settings set to receive PMs (aka private messages?)

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    • Posted

      Hello Barbara:

      Amen to all of the above!  I agree!  Each person is so different and many of us can't take Levo.  Finding a good doctor is so important and knowing what blood tests to order.  Let us know how your blood work comes out. XO Shelly

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    • Posted

      Hi shelley, nice to hear from you. I always appreciate your input. You have the medical training that validates what I've read /worked out over the years. So much of thyroid stuff has nuances, angles and exceptions that other viewpoints are essential. It's even better when you agree! smile
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    • Posted

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    • Posted

      Sorry, phoned glitched/jumped causing me to hit 'reply' too early...

      Update on my latest blood test results (these should only be used as one factor of many measures to assess whether I am on the right dose, as it also depends on the 'patient's metabolic rate' as well as other tests). On 24 Aug 2015: T3<1.5 (range 2.6-5.7); T4=7.2 (9-19); TSH=9.7 (0.4-4.9).

      T3 result is unmeasureable, which is not surprising as I had the blood test in the morning and last took ThyroGold at 15:30 the previous afternoon. They interesting thing is that even though these results and the other tests (see below) show that i am being undertreated with thyroid hormone, I feel way better than I did when I was on levothyroxine (due to my not converting T4 to T3).

      If you want some really good additional measures on how to assess whether your thyroid horme levels are correct, have a look at thyroidsolutions . com in the questions and answers section. There is s 20 point checklist for grading one's symptoms and advice for 4 additional tests to be done daily by the patient (basal pulse rate, basal temperature, basal fasting body weight and the 'Tammy finger tip test'. There is also a list of tests that can be run by a doctor - though I doubt many doctors would feel they have the justification to do so, even if they have the resources.

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  • Posted

    Here is a small factoid regarding supressed T4.

    I had a thyroidectomy after having Thyroid cancer and for the seven years since my TSH has been zero.  I only recently learned that it is best to keep TSH supressed for a "while" after surgery so that your pituatory doesn't stimulate any cancerous cells which may be still around - so that they do not grow again.

    I'm not sure what the "while" is between supression and "free floating" of TSH. I suspect it is about 7 years after surgery.

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    • Posted

      Thanks LAHs. I wouldn't want to worry people who are in this situation as keeping TSH suppresed after sugery tor this long is necessary. I think the key thing here is the amount of time mine was suppressed for (i.e. much longer).
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