So, I first went on levothyroxine (50mg) back in April after running the London marathon.
Fast forward 6 weeks to my initial blood test to see if the TSH had resolved itself, it was 0.3. Since then I’ve been feeling ridiculously fatigued and so unwell. So I had some more bloods last week and my TSH is now 2.35 and T4 is 11.6.
(Still on 50mg)
I feel absolutely horrendous everyday, so fatigued, like I live in fog and in a bubble and nothing is real. It’s exhausting.
My question is, why would it of gone right down then back up again, secondly why am I still feeling terrible if the doctor says my bloods are ‘in range’ I’m so frustrated and I have 2 young children I just want to feel better for 😢
Absolutely you need next dose increase to 75mcg daily
Retest again in another 6-8 weeks
Initially when you start on Levothyroxine 50mcg dose …..TSH drops
As your body gets use to having more thyroid hormone available, so your metabolism picks up ……TSH rises and you’re ready for next increase
Likely to need further increase(s) over coming months
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Which brand of levothyroxine are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
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
Wow that is so helpful thank you so much!! I’ve asked the GP if I can increase to 75mg (even then he was very reluctant!!) how quick can I see an improvement in my health? I’m so exhausted I can barely function today x
Went to the GP today, refused to increase my dosage to 75 from 50. Didn’t even give me the time of day. Just said your levels are in range therefore I won’t be doing anything x
Didn’t even give me the time of day. Just said your levels are in range therefore I won’t be doing anything x
Was test done early morning and last dose levothyroxine 24 hours before test
What’s the range on Ft4 result? (Figures in brackets after test result)
see different GP
Print out the guidelines I gave you earlier and be ready to quote them
Ask for a “trial “ increase in Levo to 75mcg daily
If still refused …..you will need to go over GP’s head and see thyroid specialist endocrinologist privately
BEFORE booking consultation you need FULL thyroid and vitamin test results
Vitamin D, folate, B12 and thyroid antibodies and CRP
Cheapest is Medichecks
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
This is all I got. I’ve ordered a medicheck full thyroid panel. The test was done mid day but I took my levo dose before I went to the doctors. Would that make a difference?
The test was done mid day but I took my levo dose before I went to the doctors. Would that make a difference?
Yes definitely would
if you took levothyroxine BEFORE blood test Ft4 is falsely high
Results show
Free T4 (fT4) 11.6 pmol/L (9 - 19.1)
Ft4 only 25.7% through range
If you tested correctly early morning, before 9am, only drinking water between waking and test ….TSH would have been higher……and Ft4 significantly lower … probably below range
when adequately treated Ft4 (levothyroxine) should be at least 60-70% through range
You could tell a white lie and say you were taking high dose biotin (which falsely affects test results)
Then request new test ……and ensure next test done correctly
Also request (politely insist) that B12, folate, vitamin D and thyroid antibodies are included at next test
You need to be aware, that many GP’s are absolutely clueless on how to read test results or how to manage hypothyroid disease
Levothyroxine does not “top up” failing thyroid….it replaces it. Absolutely essential to get dose increased as fast as tolerated
Typically eventually likely to be on approximately 1.6mcg Levo per kilo of your weight per day
That such a common disease is currently so poorly understood and managed is an outrage
There’s almost 2 million people in U.K. on levothyroxine. 90% are female and 90% of primary hypothyroidism is autoimmune
I really appreciate you taking the time to reply with such useful information. He made me cry today he was absolutely awful. I have ordered a full thyroid panel from medichecks so if that comes back higher still, what do you suggest I do? Would it be an option to go from 50 to 100 or would they have to put me on 75 first xx
Thanks so much. I actually started self medicating 2 days ago with 75mcg because I knew I needed to but due to the doctor dismissing it today I don’t know whether to go back to 50mcg or continue with 75?
This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.
Always need to think - when a doctor says you are in range, all they mean is the lab result was somewhere between the bottom and top. And that is usually a pretty big difference.
Do you have the reference interval (range) for FT4? That can vary hugely across labs. 11.6 could be anywhere from at (or below!) the bottom, through to about halfway through. You can use the calculators to work out the percentage through the range!
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
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.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
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