Hi I’ve posted here before. I’m on levothyroxine following borderline TSH and Free T 4 results when it was discovered I had a cyst pressing on my pituitary gland (and stretching my optic nerve). The cyst has been removed/reduced in size.
I was originally put on hydrocortisone but my cortisol levels are back to healthy levels and I’ve come off. I’ve remained on levothyroxine as my endocrinologist thought I should wait before experimenting coming off. My levels for TSH and Free T4 have been checked quite regularly over the last 14 years and my results seem to my untrained eye good up until March this year when my free T4 dropped to 11.5 pre-surgery (all previous results were:15.1, 12.9, 13.6, 14.2, 16.9, 14.0, 15.1, 15.5 and so on. My TSH was 1.64 in March (prior to that .94, 3.9, 1.59, 1.31, 1.15, 1.7, 1.8, 2.24, 1.83 etc). I’m not sure what time of day any of these were taken.
My results post surgery and having started levothyroxine about a month prior were deranged at TSH 0.05 and Free T4 18.5 and then a month later in May at healthy levels TSH 1.45 and Free T4 17.6.
My endocrinologist has said we can do other tests when I see her in November - I’ve requested freeT3 and the other 2 tests you recommend. I’m concerned as I have mild tinnitus which I’ve read on this site can be related to the medication or underactive thyroid. And I have a faster heartbeat especially when I wake and feelings anxiety (which may be related to the medication or other causes I’m not sure).
So I’d rather come off sooner rather than later.
Would you recommend stopping now or waiting till November?
What would be the logic of waiting till November to stop rather than now?
If I test now or in November whilst I’m on Levothyroxine how long should I wait to retest to see what my natural levels are?
Do my results indicate a clear need for starting it? I
was told I was borderline underactive thyroid but it was strongly recommended to take the medication.
Thanks for your advice. I really appreciate it.
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Dariab
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My results post surgery and having started levothyroxine about a month prior were deranged at TSH 0.05 and Free T4 18.5 and then a month later in May at healthy levels TSH 1.45 and Free T4 17.6.
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
Suggest you get full thyroid and vitamin testing done yourself
Low vitamin levels are very common
You need good vitamin levels for your own thyroid or levothyroxine to work well
So vitamin levels should be optimal before considering reducing levothyroxine
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Suggest you consider the Blue Horizon test as in includes cortisol
List of private testing options and money off codes
Hi, I’m 62. In June my vitamin b12 was 227, folate 13.3 and iron profile - all good. My vitamin d3 level was 53. So all ok.I started on 50mcg and was quickly put down to 25mcg (maybe after a couple of weeks I can’t remember).
I’m querying if I have underactive thyroid… I was considered borderline…
Thanks again for your thorough questions.My cholestrol is 6.4, triglycerides 1.1, HDL Cholestrol 1.5, non-HDL cholestrol 4.9, LDL Cholestrol (calculated) 4.4 and Cholestrol:HDL ratio 4.3.
My serum folate is 13.3 and the range 2.9-26.8 ng/ml
My ferritin 62 and the range 13-150 og/L
From your previous message I understand I need to increase my vit D supplementation, get B12 supplement and B vitamins after testing for pernicious anaemia. Though they will think my levels are ‘normal’.
I am virtually vegan - I do however eat a small amount of butter and mayonnaise . So I do not have any obvious sources of b12 as I avoid many fortified products.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Ferritin is on lower side …..again that’s extremely common if not eating red meat
It took 3 months for me - feeling fantastic for much of those 3 months because that is what happens when you stop levo. Then the fluid retention started and the awful anxiety. By the end of those 3 months my TSH was at 32, my ft4 bottom of range and my ft3 below range. I was very ill and my adrenals were burnt out.
I think you should monitor your levels closely. Have no set intervals just when you feel too bloaty or anxious or develop joint pains or just any change that impacts on your daily life.
You've not told us how you feel? Do you feel symptomatic?
Coming off hormone replacement entirely can be risky. Logically, if you've had a cyst inhibiting your pituitary I can see the logic of trialling coming off levo entirely but I would be very very wary myself.
Thanks for your comment. I do feel tired and have tinnitus and a racing heart which I think I put in my original post. These can be related to levothyroxine - hence I wanted to weigh up the need to be on it.
They're also symptoms I had while I was very hypo. 25mcg is a very tiny dose and probably not really doing you any good. That's not to suggest it's the levo causing symptoms, but rather you're not on enough levo to alleviate your symptoms. I have tinnitus and did while I was hypo and still do now and I'm pretty close to optimally dosed.
I don't think you're going to get an outpouring of support to come off levo; I think most of us will be very very wary on your behalf but I get the feeling you're going to try anyway.
Keep a close eye on your symptoms and you will always be welcomed back here if it turns out you do need levo.
If it turns out you don't need levo - congratulations! Hormone relacement can never beat a working thyroid and you'll be living the dream for all of us here.
Unless you are vegetarian or vegan …….You B12 is low enough to request GP test for pernicious anaemia before starting any replacement B vitamins
Once been tested
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid). This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
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