Hi, I have recently been diagnosed with Hashimotos via a scan. I have had thyroid issue for about 18 years but it his only the last 9 months that I have felt very unwell. In February my TSH was 0.37. Medication reduces from 125 to 100. Beginning of May TSH was 5.8. I am now 125 Monday, Wednesday, Friday and 100 on other days. I now have a eye spasm/ twitch. It feels quite strong. Could this be calcium related? I have worked hard increasing vitamin levels but do not take calcium. Had eye test in January as eyes were blurry but eye sight very good. Optician just said ‘hormone related’. I am seeing endocrinologist in two weeks.
I am dairy free following endo’s advice. I also at times have tingling fingers and mouth/tongue.
Most recent TSH 1.7 mu/L [0.35 - 4.9]
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Pippi39
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First of all, is TSH the only test being done? If so this is wrong, TSH is not a thyroid hormone, it's pituitary hormone which tells the thyroid whether or not it needs to make thyroid hormone. The thyroid hormones are FT4 and FT3 and these are the tests that should guide a doctor to adjust dose - in particular FT3, but unfortunately they don't seem to know this!
In February my TSH was 0.37. Medication reduces from 125 to 100. Beginning of May TSH was 5.8. I am now 125 Monday, Wednesday, Friday and 100 on other days.
Most recent TSH 1.7 mu/L [0.35 - 4.9]
If the range was the same for all tests then there was no need to reduce our Levo in February because your TSH was in range - GP should have checked FT4 and FT3.
So dose was reduced from125mcg daily to 100mcg daily causing your TSH to go over range yet in May your dose was only increased to an average of 110mcg per day.
Even your most recent TSH result is too high, the aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.
If doctors are going to continue relying on TSH alone and adjusting dose on the result of that test and ignoring the FT4 and FT3 then we will continue to have thousands upon thousands of under medicated hypothyroid patients whose lives are being ruined.
I hope your endo is more enlightened and looks at the whole picture rather than just the TSH.
I now have a eye spasm/ twitch. It feels quite strong. Could this be calcium related? I have worked hard increasing vitamin levels but do not take calcium.
I don't know if calcium is involved but if you're concerned ask for calcium to be tested.
Had eye test in January as eyes were blurry but eye sight very good. Optician just said ‘hormone related’.
That's not a very helpful response from your optician. My vision goes blurry but I'm in the early stages of cataracts.
As far as the tingling is concerned, have your nutrients been tested? Low B12 can cause tingling.
Always test TSH, Ft3 and FT4 and all thyroid tests need to be done as early as possible in morning before eating or drinking anything apart from water and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
Many many hashimoto's patients will have extremely low or suppressed TSH when Ft3 and FT4 are at high enough levels
Just testing TSH is completely inadequate
Most important always is Ft3 (at least 60% through range) and FT4 will usually need to be higher
Did your optician test for dry eyes? Dry eyes can cause blurred vision and you don't have to put up with it. There are drops and gels that can help but you need a proper evaluation. You need to get a second opinion from a fully qualified optician who can recommend the correct treatment or refer you to an eye hospital if needed.
I previously suffered from excessive eyelid twitching.
I started taking magnesium as I have a number of other conditions suggesting magnesium deficiency a common factor (migraine, diabetes, propranolol use & long term untreated hyperthyroid).
The twitching rarely happens now & I really believe taking magnesium supplement resolved it.
I tried Bisglycinate magnesium which was good but now use powdered citrate magnesium.
Eye strain and being tired / stressed definitely makes it worse, too much caffeine sets it off too. Also worse when eyes dry / irritated warm compresses and eyelid wipes & drops have helps with that.
Beginning of May TSH was 5.8. I am now 125 Monday, Wednesday, Friday and 100 on other days.
Do you always get same brand of levothyroxine at each prescription
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test.
Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when on T3, day before test, split dose into three smaller doses roughly equal 8 hour intervals. Taking last dose T3 at roughly 8-12 hours before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
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