hello, My Thyroxine medication has been lowered. I was actually asking the doctor if it could be increased due to increased fatigue, apathy and hair loss, but they said that it needs to be decreased and my symptoms would get better on the new levels.
It hasn’t so far 4 weeks on. I’ve just got access to my test results and was wondering if someone would be kind enough to let me know if these are borderline or if there’s anything I can do to help me feel better? Or other tests I need to ask for?
I’m really grateful to have found this community, I didn’t previously know to book a blood test first thing in the morning or to not take my medication within 24 hours before so will do that for the next blood test. I also take multivitamins with biotin in them. Could these things have that much effect?
Thank you in advance.
Test results
Recent test results:
Serum TSH level <0.05 min/L [0.2 - 4.0]
Assuming patient on treatment (ie Thyroxine) for primary hypothyroidism, adequate replacement therapy indicated by TSH 0.2 - 2.0 min/L.
Results suggest over-replacement with Thyroxine.
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Achilla
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Did they not even do an FT4 result in the light of your TSH being below range?
The biotin may have affected the results but the studies that showed this link involved large doses of biotin. The amount in a multivitamin is less likely to affect it but to be safe we advise stopping any supplement containing it for 3-5 days before the blodo test.
4 weeks into a dose change is still fairly early to know how it will make you feel at that level. To accurately see where your thyroid levels are we need to see a full thyroid panel of TSH, FT4 & FT3. The NHS rarely if ever do this so many patients in this group pay for private blood tests.
It may be that you have low/deficient vitamin levels and we need OPTIMAL vitamin levels for our thyroid hormone to work well.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. 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/testing/priva...
There is also a new company offering walk in (includes free blood draw) & 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.
Sometimes we find that when vitamin levels are low the TSH drops.
As we cant see your free hormone levels as they only tested TSH you should get private bloods run to see where those levels are including your vitamin levels which are really important.
Which brand of levothyroxine were you taking on 100mcg
Which brand for 75mcg
Retest thyroid levels 6-8 weeks after dose reduction
Meanwhile
Hair loss
Get GP to test full iron panel now including ferritin for anaemia
Test early morning, fasting, and no iron rich foods night before test. If on iron supplements stop these 5-7 days before test
Also request test vitamin D, folate, B12 too
Do you know if your hypothyroidism is autoimmune thyroid disease (hashimoto’s)
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Thank you so much for such a detailed reply. I’ll reread again to digest it later on. I don’t know which type I have, I will check my records now I have access to them. Thanks again.
4 wks is a little bit too soon to know how you'll feel on a new dose . i often find the first 5 wks are rubbish , even when the new dose did actually turn out to be an improvement by 2 /3 months .
pay more attention to how you feel from wk 5/6 onwards than on how it's felt up to now.
in future , if asked to change your dose based only on TSH result, say you really want to see an fT4 result before you consider it, because a TSH on it's own can sometimes be misleading.
( it's nice to see this labs guidance for GP's says aim for TSH below 2 on replacement therapy , they got that bit right... but supressed TSH does not always indicate overtreatment with thyroxine .. sometimes it does, but not always)
It's a life-long condition, and treatment for it by doctors is piss-poor. It is something we need to learn about and become fluent in. We need to be our own advocates, work out what we need and then source it either via the NHS or privately. Most of the time your doctor or a hospital endocrinologist won't help you.
Best thing to do is read books about it. Read this patient forum daily, the questions and the answers are so informative and right from the coal-face as it were. Watch YouTube videos about it. Read more books. It soon starts to make sense and then you will be in a position of knowledge to deal with your doctors and not get messed about.
It's daunting when you first realise that. But then it starts to be empowering once you being to learn more about it. We were brought up to believe doctors knew best. But they don't. Not even close. Some things we have to surrender ourselves to them for, but not this. This we can actively work for a result we want.
I’m glad you said that about feeling rubbish on a changed dose. I’m 4 weeks into a small increase as advised here and feeling more tired than usual. Going to stick it out though and am in the process of booking a Medichecks blood draw for 2-4 weeks from now.
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