I am on Levothyroxine 75mcg daily. Requested blood test in Feb 22 as feeling anxious on waking with heart rate <60 but blood pressure above normal reading. Increased fatigue, symptoms similar to before diagnosis of mild hypothyroidism (T4 9.7 TSH 10.3 Ref range as below) in September 2020.
Feb 22
T4 14.2 pmol/L (9.0 -22.0)
TSH 5.00 pmol/L (0.35- 5.00)
GP ticked box as no action as within NHS range but symptoms persist. Does anyone else have anxiety feelings, weak arms on waking? Wears off on getting up. No probs with sleeping. Would increase Levo help? Weight 67 kg. Feel stressed even negotiating GP to ask for further test!
Felt ‘normal ‘ in July, September, 2021 when readings:
July 21 T4 13.00, TSH 2.45
Sept 22 T4 13.1, TSH 3.79
Would be very grateful for comments, please. Thank you.
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RoyalOperaHouse
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How long have you been taking 75mcg of Levo RoyalOperaHouse? You are definitely under medicated. I only began to feel better when my TSH was under 2 and significant improvements when it was under1. Have you ever had FT3 checked or antibodies (to confirm if your condition is auto immune)? Many members test privately for these, as GPS reluctant to test if TSH and FT4 within range. It’s also key to have optimal ferritin, folate, B12 and Vit D and you can test these privately too (please don’t supplement before testing levels first).
I would request an increase to 100mcg initially, but you may need more to alleviate your symptoms.
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH and lowest Ft4
Approx how much do you weigh in kilo
Guidelines on dose levothyroxine by weight can help persuade GP to increase
Even if we frequently don’t start on full replacement dose, 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
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Felt ‘normal ‘ in July, September, 2021 when readings:
July 21 T4 13.00, TSH 2.45
Sept 22 T4 13.1, TSH 3.79
How 'normal' did you feel with these results? "Absolutely whizz bang fabulous, I've never felt better, this is fantastic" or "I'm better than I was and can plod on"?
The aim of a 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 this is where you feel well.
Feb 22
T4 14.2 pmol/L (9.0 -22.0)
TSH 5.00 pmol/L (0.35- 5.00)
GP ticked box as no action as within NHS range but symptoms persist. Does anyone else have anxiety feelings, weak arms on waking?
You are undermedicated. Your TSH is far too high, it is on the edge of the reference range and your FT4 is only 40% through range
Anxiety is a symptom of hypothyroidism so being undermedicated will mean that you are symptomatic. You need an increase in your dose of Levo, 25mcg now and retest in 8 weeks after your levels have had time to settle. To support your request use this information to show your GP that it's not just being "in range" that is required but an individual approach to find the optimal dose for the patient to feel well:
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article which contains this quote from ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
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