Hello, quick question. Does anyone have any thoughts as to why my TSH should suddenly jump from an average of 0.2 to 5.34.I had a total thyroidectomy flowing cancer discovery 4 years ago. And have been on 150 mg of Levo as a supressing doses to keep any new thyroid cells at bay. Have felt generally ok. This was reduced to 125 mg about 6 months ago. Could that reduction be the reason in the jump in my readings?
Many thanks in advance
Mr Gawin.
Yes that could well be because of the reduction.
A reduction in dose can definitely increase your TSH. When you reduce dose it's best to recheck your levels 6-8 weeks following the change in dose.
Did you do the test as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Many thanks for your reply. Yes I followed all the usual protocols prior to the blood draw. My GP, a locum I believe, suggested I drop my dose to 100 mg. Which would then durely mean my TSH would continue to rise? I thought this strange guidance as my understanding was to keep the reading as low as possible so as to inhibit and new thyroid cells. Any thoughts? Again thanks in advance.
Mr Gawin.
I would ask for a second opinion from a different GP and refuse to reduce your dose. You should probably be going back to your original dose. If necessary contact your Endo if you still have one.
Vitamin levels are essential to test every year and be supplementing low levels to make your thyroid hormone work well.
what were results when on 150mcg
Never agree to dose reduction based just on TSH and Ft4
ALWAYS get full thyroid and vitamin testing done before ever reducing dose
Likely low vitamin levels now as you have been left under medicated
if you did need to reduce dose….reducing by 25mcg PER WEEK might have been enough….25mcg per day is invariably too much
Test vitamin D, folate, B12 and ferritin at least annually
Frequently necessary to supplement to maintain GOOD vitamin levels when on levothyroxine
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we need good vitamin levels
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If also On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Hi Gabgawin, i have read some recent thinking coming from endocrinologists suggesting that the TSH does not need to be kept so firmly supressed 'forever' following cancer ... that after a few yrs it can be allowed to rise a little . Ask if this was the reason for your dose reduction .
However , even if you accept that it may not need to be totally supressed forever , yours has now risen far too much , showing that the dose reduction you had was too large, so your dose should now be increased slightly.
Even if TSH is not kept totally supressed for cancer reasons , it should always be kept under about 2/2.5 in ALL patients on levo,
List of references recommending GP's keep TSH lower :
healthunlocked.com/thyroidu....
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Please consider signing and SHARING this petition if you haven't already done so .. if you have signed already THANKYOU 
healthunlocked.com/thyroidu...
Direct link to petition ~ petition.parliament.uk/peti...
"Give more funding for thyroid research and patients after price hike"
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