I’ve just had an email with new TSH result and it’s now 12!!! from 0.03. This has happened from dropping my levothyroxine from 125 to 75. I’m waiting for a doctor to call me any help before I speak to him would be great
TSH Result: I’ve just had an email with new TSH... - Thyroid UK
TSH Result
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Molly139
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That's a huge dose drop so no wonder your tsh is that high ! You need to increase again but may take a while to stabilise, been there and got the tshirt myself !
Thank you for answering so quick I feel really anxious now should I be worried?
No don't panic you just need your dose increasing again assuming you were ok before the reduction. My tsh went up to 38 when I was forced to drop my dose, I knew it would but had to prove a point to shut my then GP up !
Thank you so much again I’m an anxious annie since all this started 😩
Your doctor reduced your dose too much. That's why we have to read/learn ourselves to be aware that few doctors seem to know how best to treat patients who're hypo. The aim is sufficient levo (or whatever is prescribed) to bring TSH to 1 or lower and FT4 and FT3 towards the upper part of the ranges. The latter two are rarely tested.
Adjustments are usually by 25mcg (either up/down).
Hi, recently joined this group and very interested in this post. Over the past 13 years or so I think I've made the link that when my TSH is low e.g. 0.49, 0.79 even 1.1 I get various symptoms to include heart rate, dizziness and near blackouts. According to my reading, symptoms of over medication.
At the moment I'm on 75mg (from 100mg) and from June to August my TSH increased from 0.49 up to 4.87. (I felt better by the way)
In 2015 I reduced my meds from 100 down to 50 I think and in six weeks my TSH rose to over 10. I felt quite well, no AF's but tired in the early evenings. This led to me having a heart monitor for 7 days and in June 2016 I had a pacemaker fitted.
In fact I've just referred to my own health file and found a letter I'd written May 2011 after I'd been in hospital in the January. I'd been advised to increase up to 175mg - then in the March to reduce to 150mg and 175mg alternate days. Result March TSH 0.04 and May 0.17 - this letter to my doctor then in 2011 was asking about blackouts I'd been getting.
So now 2020, when I asked my GP for advice (and an endo referral which she denied) on how to manage the level she told me I have a choice - to either increase medication or stay on same dose and have another blood test in 3 months. That is due on 16th November. I've written to her to ask which ones I can have on the NHS (from the list published here last week) I've had no reply - I can try to follow that up but now think I should just go for the Medicheck package anyway.
So my question is:- Am I making a wrong connection with my readings? Can this fluctuation be down to something else?
I think that I am feeling better - again tired from about 4pm and sometimes after being up about a couple of hours.
Years ago I joined the Thyroid Foundation and I wrote asking about a TSH reading of 0.79 - their very nicely typed letter said "it appeared to be a bit high and I should discuss with my doctor! ???
TSH wasn't as high as mine. My response from GP was that my results were fine (that was including other than thyroid hormones).
It was only when I got a print-out from the surgery that my 'fine' result was a TSH of 99 +. Good job I had another form (phoned from Scotland to order it a few days before). Got another blood test at hospital who then phoned GP to ask why no action had not already been taken. Got prescribed levothyroxine.
Wow! How did you feel at that time?
Who asked you to drop the dose? GP or Endo? The drop was too great. If you’re getting symptoms of hypothyroid then make a note and let the GP know as it looks like you are under medicated.
GP told me to drop I’ve got telephone appointment with endo tomorrow.
GP has been idiotic in making you drop so much. I suspect Endo will ask you to go up and then recheck in 6 weeks. Make sure you write down any symptoms you are having since the change in dosage and continue to track them once you get the Endo’s advice.
Molly139
Wasn't the reduction in 2 steps, 125mcg down to 100mcg, then down to 75mcg, as your previous post suggested?
Can I refer you back to my reply to your previous post healthunlocked.com/thyroidu...
Did you not discuss with your GP that you had taken your Levo just before your test like I advised, and that the result would reflect the fact that you'd just taken your Levo rather than your normal amount of circulating hormone?
Yes it was 2 drops but this test was done last week fasting did 24 hours and no levothyroxine
50mcg a day is far too big a reduction . A more sensible approach is that Levo should be adjusted by no more than 25mcg at a time.
Personally i think 12.5 mcg adjustments are enough to have a noticable effect on my symptoms , and my TSH.
Eg in my case;
125mcg TSH 0.04 [0.57-3.6]
112.5 mcg TSH 0.09 ["]
100mcg TSH 0.5 ["]
(In the end i went back to 112.5 since 100mcg left me constipated, GP not happy that TSH is lower than range, and is very unhappy that my FT4 is well above range, but is letting me do this. as i was unwell when it was reduced to 100mcg )
You should have had a much smaller reduction. Your TSH has noticed the big drop in hormone levels and is shouting for more, hence the high result of 12.
Levo should be increased again, to maybe 100mcg and see how that feels.
Were you feeling good on the 125mcg , or did you have any symptoms of overmedication ?
Did GP reduce dose Based on TSH result alone ? Was your FT4 (if they did it ) also over range ?
I looked into the evidence for bone /heart risks from low TSH and decided i'm happy with TSH that is above 0.04
Low TSH is associated with increased statistical risks for heart and bone problems, BUT only when it is below 0.04 , From 0.04 to 0.4 there is no increased risk over an in range result.
I can add the links to this evidence, and some old posts discussing the 'risks' of low TSH if you are interested.
I’d love some links please. I had lots of overmedicated symptoms for years which was totally ignored as I my TSH was just within range
Heres' some old posts discussing the subject of 'risks of Low TSH v Quality of Life;
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
And here is the research that i decided to trust. The NHS use this as evidence too, but it seems to me they didn't read all of it !
SlowDragonAdministrator
1) GP should never reduce dose based just on a TSH
Did you have Ft4 and Ft3 results as well when TSH was 0.03
2) only ever reduce dose if Ft3 is over range
3) only reduce by 12.5mcg per day ...or possibly by 25mcg
Reducing by 50mcg was ludicrous
4) insist on vitamin D, folate, ferritin and B12 being tested Now
What vitamin supplements are you currently taking?
Will need dose increase to 100mcg and bloods retested in 6-8 weeks
Likely to need further increase after next test results
All four vitamins need to be optimal
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
125mcg overmedicated Symptoms
7.7.20 Thriva results
TSH 0.02 (0.27-4.2)
Free T3 5 (3.1-6.8)
Free T4 26.2 (12-22)
Vitamin D 43 (75-175)
Reduced to 100mcg
18.8.20 Went for coeliac test which was negative and Nurse tested Thyroid too this was after breakfast and after levo
TSH 0.09 (“)
T4 24.4 (“)
Reduced to 75mcg
GP test 1.10.20
TSH 12 (“)
T4 14.8 (“)
Vitamin D 73.8 no range given
SlowDragonAdministrator
July results
Ft3 well within range
Ft4 slightly high
Had you taken levothyroxine 24 hours before test?
Vitamin D too low
Aug
No Ft3
Ft4 - same question
July test after fasting and 24hour of no levo
August test was sprung on me
Since being on 75mcg I’ve felt much better apart from neck and shoulder aches which I don’t know if it’s related
GP will increase the dose to 100mcg
Bloods should be retested 6-8 weeks later
Make sure to get testing done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Which brand of levothyroxine are you currently taking?
Has it changed on 75mcg?
Make sure to get FULL Thyroid and vitamin testing at next test
Vitamin D is obviously much better.
How much vitamin D are you currently taking?
I’ve got a telephone appointment with a NHS Endocrinologist tomorrow morning so he should change my dose.
Now 75mcg is TEVA
Before 100 and 125mcg was Northstar
Vitamin D 2000 iu
Vitamin MK2-7 200 Uh
Magnesium 365 I take 4g
Overmedicated symptoms have nearly gone, I’m now wondering if it was low D and magnesium that were causing them?
Now I have daily shoulder ache.
I’ve also been gluten and dairy free since mid August.
I intend to get another Thriva test for thyroid, thyroid antibodies and vitamins in 6-8 weeks time.
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