Hi, looking for advice. I've been on Levothyroxine 50mg dose for 3 years. My last TSH was 2.75 so within normal range but my hair is thinning, I'm always cold, sometimes constipated and low pulse rate, sometimes as low as 50 and I'm no athlete. MyGP only tests TSH should I ask for more tests?
Normal TSH but symptoms of Hypothyroidism - Thyroid UK
Normal TSH but symptoms of Hypothyroidism
A TSH of 2.75 should be enough in itself to tell your doctor that you need and increase in dose! It may be in-range, but it's far from 'normal'. It should come down to 1 or under. But, doctors know so little about thyroid and blood tests that they believe anything result that is anywhere within the range just has to be good. And even if you have T4 and T3 tested and they were low, the average GP would be none the wiser. They just don't have the education, I'm afraid. So, just tell him you want an increase in dose.
As for other tests, asking for nutrient testing - if you have had any recently - would be a good idea: vit D, vit B12, folate and ferritin. Low nutrient levels can cause hypo like symptoms.
welcome to the forum
You are almost certainly under medicated
50mcg is only the standard STARTER dose
Being on too low a dose results in low vitamin levels
hair loss frequently low iron/ferritin
On Levo TSH should always be below 2
Most people when adequately treated will have TSH around or below one
INSIST GP test Ft4 and Ft3 and vitamin levels
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 tested
Also both TPO and TG thyroid antibodies tested at least once
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
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
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
See detailed reply by SeasideSusie
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
guidelines on dose levothyroxine by weight
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
N
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.
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
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).
WOW "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 final sentence here - and at my last tests the lab dud not bother to test T4 - because the TSH was below 1 (0.84). I'm getting onto them. So annoying!
Thousands upon thousands of U.K. patients forced to test privately to make progress
Just testing TSH and Ft4 is useless
loods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you always need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
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)
Yes, I always do the time of day thing, fasting and make sure I miss a dose beforehand. I think the most sensible thing for me to do is organise a full bloods testing including vitamins and minerals in the New Year. TBF I did have all that late Jan last year, except the more specific antibody markers. I haven't ever had those done despite my GP requesting it from the lab.
except the more specific antibody markers. I haven't ever had those done despite my GP requesting it from the lab.
GP should always test TPO antibodies at diagnosis of hypothyroidism
NHS (currently) won’t test TG antibodies unless TPO are high.
Significant minority of autoimmune thyroid patients only have high TG antibodies
pubmed.ncbi.nlm.nih.gov/303....
ncbi.nlm.nih.gov/pmc/articl...
Our results confirm a high prevalence of autoimmune thyroiditis (20%) in patients with obesity. TgAb may be associated with hypothyroidism in the absence of TPOAb. TgAb measurement may turn helpful to unravel a proportion of subjects that may have or may develop primary hypothyroidism requiring specific substitutive treatment.
I would agree absolutely with SovietSong
Get dose INCREASE now to 75mcg
Then get FULL Thyroid and vitamin testing 8-10 weeks later
Ideally do NOT change brand levothyroxine as you increase dose
Only ever change one thing at a time
Which brand of levothyroxine are you currently taking
Three years of 50mcg daily is just madness.Feeling cold and constipation are tell tale symptoms of undermedication.Insist on 75mcg daily for 8 weeks then retest.You may end up needing 100-125 eventually.
Thank you to everyone who has commented, it's taken a while to get through all the information. I am so glad I wrote on here. I'm leaving the private blood tests for a few days as I've been on supplements to help my hair loss. Once I've got the tests back I'll take them to the gp, and depending on the results will ask to be referred to an endocrinologist. Thanks to everyone who's commented, I feel informed now. I'll let you all know what my tests say. I'm going for the gold standard as this seems to be the most thorough testing. 😀😀😀