22.12.22 after bloods was told my thyroid was essentially dead.Started 75mcg 22.12.22
Redone bloods 10.01.23
Results attached in picture.
Past 2 weeks hair falling out in clumps.
All other vitamins normal.
26.1.23 I have self diagnosed down to 50mcg
Should I go lower?
NHS rejected endocrinologist referral 25.01.23.
Will someone please kindly guide me - how much Levothyroxine should I take?
47 female
Height 5 foot 3 weight 73kg - obese
Definitely do NOT reduce dose
more likely to need dose INCREASE in levothyroxine
Just test TSH and Ft4 is completely inadequate
ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
Which brand of levothyroxine are you currently taking
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
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 (Hashimoto’s or Ord’s thyroiditis)
Low iron/ferritin frequently results in hair loss
Low Vitamin D joint pain
B12 and folate - dizziness/pins and other
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 on here that all thyroid blood tests early morning, ideally just before 9am 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
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...
If you can get GP to test vitamins and vitamins then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Appreciate your response.All other results were in normal.
Brand is Accord.
I'm very confused and worried about the incredible hair loss in a short period.
please add actual results and ranges
TSH
Vitamin D
Folate
Ferritin
B12
TPO thyroid antibodies
TG antibodies
hair loss is very common when first starting on levothyroxine
It will improve as levels stabilise
Assuming tested as recommended
Test result shows you are not on high enough dose levothyroxine
when adequately treated on just levothyroxine Ft4 will be at least 70% through range
FT4: 11.8 pmol/l (Range 9 - 23)
Ft4 currently only 20.00% through range
Guidelines on eventual daily dose levothyroxine is approx 1.6mcg per kilo per day
73kg x 1.6mcg = 116.8mcg per day
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
So I should be on 116 mcg daily?
no….not yet
We only ever increase dose by 25mcg per day
Can’t increase too quickly
Request next increase to 100mcg daily
Which brand of levothyroxine are you currently taking?
Bloods should be retested again in 6-8 weeks time
Your bloods on 75mcg Levo were done 19 days after starting .... that is too soon to tell anything useful. The TSH level takes at least 6 weeks to properly reflect the new T4 levels , and 19 days is barely long enough for the T4 levels from your dose of levo to build up in your blood (it has a 'half life' of 7 days) . These levels will probably be quite different when tested at the proper time of 6 weeks , and i would say 4 weeks is the absolute minimum that a GP should be retesting bloods after introducing Levo or altering dose .
Symptoms on 75mcg will also continue to change over 4-6 weeks . So testing bloods at just 19 days is no use as a guide to adjusting dose ... and symptoms over the first 3 /4 weeks are also no use as a guide for adjusting dose.
Reducing your dose to 50mcg is probably a mistake which will just prolong how long it takes you to find the correct dose .... you need a blood test 6 week after being on a CONSISTENT daily dose of 75mcg to check that dose , and dropping to 50mcg will have messed that test up .
Your fT4 is still looking pretty lowish even thought he test was done too soon to be sure ,, so it looks like you do really need at least 75mcg ,and therefore so you should probably go back on 75mcg and stay there for 6 weeks and then get a blood test,...(you could stay on 50mcg and wait 6 weeks to test that , but that is just making it take longer to get you well again .. most people will end up on somewhere between 75mcg and 150mcg when adequately treated)
Hair loss is very likely when we have sudden shifts in thyroid hormone levels (up or down ) , but due to the natural cycle of hair growth / shedding it is a bit of a 'delayed' response .. it is just as likely that your hair loss was a direct result of becoming very hypothyroid (before you started taking the levo)
Hairloss should improve naturally once your thyroid hormone levels have been stable for a while on the correct dose of levo for your needs , (which is already quite a long process , as to get an accurate TSH reading you need to wait 6-8 weeks on each dose to see the effect ..and allow symptoms to settle following each change in dose .. symptoms including hair loss can be up and down, until correct dose is stabilised ... dropping your dose to 50mcg is equally likely to increase the hair loss in a few weeks time as stop it .. everything to do with thyroid is on 'a bit of a delay' .. so it's not usually possible to figure out within 2/3/4 weeks what is causing what .
Things get better over 'months' rather than 'weeks' when replacing thyroid hormone ,, and finding the right dose can be a bit like "Two Steps Forward , One Step Back'
if it help's, here's A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."
I am grateful for all the feedback and guidance. It's only been one day on 50mcg so I will revert back to 75mcg. Your perspectives and expertise are comforting during this confusing and alarming period.
ok 
so just one day of 50mcg wont have messed up the test .. you can still test at 6 weeks from when you started , come back with those blood tests results and we can help make sure you stay on track .
hang in there .. it sucks and it's horrendously tedious waiting and waiting and waiting and trying not to panic in the meantime ~but treating hypothyroidism is very much like "The Story of The Tortoise and The Hare" .. slow and steady gets there quicker.
Hi Moonlight5
Whilst your waiting have a look at my profile. My bio is a sort of guide to how I got onto full replacement dose of Levothyroxine, thanks to the advice from SlowDragon and others on the forum.
I have also posted my results and the reports that I had made for doctors to read before telecon. In my profile all my posts sit together so easy to find. I used the 1.6ug per kg as a guide - everything is a guide but only your symptoms will give the fine tuning - symptoms are very important. Blood tests do not replace them.
I have also made a post or comment (can’t remember which)on hair loss- I had some too. It’s grown back 😊👍
Thank you. I appreciate the insight.
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