Hi all. I’ve been taking Levothyroxine for over 12 years now, and despite an increase from 50 to 75 mcg last year, my quality of life just hasn’t improved. I have constant fatigue, hair falling out everyday, thinning eyebrows and cannot lose weight despite reducing my daily calorie intake to around 1100. I’ve been pushing myself to go out running over the last few months, and am part way through Couch to 5K, but am struggling with motivation as I just ache all the time. I’m 45 years old and really hoped to have seen some improvement in my health by now. Has anyone tried seeing a private doctor / specialist and if so, did it help? I’ve only ever seen the GP, and sadly they’ve been pretty unhelpful 😔. Thanks in advance!
Quality of life not great : Hi all. I’ve been... - Thyroid UK
Quality of life not great
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Agatha1977
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Hello Agatha :
If you are not able to convert the T4 into T3 in your body or not on the right dose of T4 -punishing your body with dieting and exercise will only make matters worse and your thyroid function will down regulate even further.
To know if you are utilising well the T4 - Levothyroxine - we need to see at least a TSH, Free T3 and Free T4 reading and range, and if you also have a current ferritin, folate, B12 and vitamin reading along with thyroid antibodies and inflammation - that gives us as full a picture as we need to explain where you are, and what your next best steps are, in order to run and exercise without suffering the aftermath of going 4 steps backwards after exertion.
T4 - Levothyroxine is basically a storage hormone which needs to be converted by your body into T3 the active hormone that runs the body and non optimal levels of core strength vitamins, namely ferritin. folate, B12 and vitamin D can compromise this conversion as can inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing.
SlowDragonAdministrator
Which brand is 75mcg
You’re likely ready for next dose increase in levothyroxine
75mcg is only one step up from starter dose
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Very likely low vitamin levels, especially when left under medicated
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
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...
Only do private testing early Monday or Tuesday morning.
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...
Tips on how to do DIY finger prick test
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
SlowDragonAdministrator
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
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
Also here
cks.nice.org.uk/topics/hypo...
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.
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).
Buddy195Administrator
Can you share your theory blood test results with us for TSH. FT4 and FT3, Agatha1977.
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
thyroiduk.org/help-and-supp...
I suspect you are still undermedicated given your adverse symptoms. 75mcg is a low dose; likely you will need more. However, we need to see your blood test results to advise further.
SlowDragonAdministrator
Before booking consultation you must get FULL thyroid and vitamin test
Very likely you need dose increase in levothyroxine
Improving low vitamin levels essential
List of thyroid specialists and endocrinologists if GP unhelpful
SlowDragonAdministrator
suggest you reread all your previous posts and replies
healthunlocked.com/user/Aga...
ESSENTIAL to test vitamin levels at least annually
Thousands of U.K. patients forced to test privately to make progress
What vitamin supplements are you taking
Don’t think you have ever had thyroid antibodies tested either
Examples of private test results
Medichecks
healthunlocked.com/search/p...
Blue Horizon results
Hi and thanks all for the useful comments.
My last TFT was in May 2023 and the results were:
TSH - 2.98 mu/L
T4 - 13.7 pmol/L
T3 - 4.2 pmol/L
My GP didn’t recommend any follow up on this and confirmed all results were within “normal” range.
I had a full blood test in July this year, and relevant results from that were:
TSH - 0.85 mu/L
B12 - 269ng/L
Ferratin - 10.6 Micog
Folate - 10.6
Vit D - 55 nmol/L
Again, GP advised all results were “NormaI range”. I did ask my GP about vitamin supplements and she recommended I research these some and send her the details as she wouldn’t recommend I take them until after she had checked they were safe. I’ve done a bit of research and have started taking a selenium supplement, but nothing else yet.
Any advice on the above would be gratefully received. Thank you!
B12 - 269ng/L
Ferratin - 10.6 Micog
Folate - 10.6
Vit D - 55 nmol/L
No range on your results but they all look pretty close to the bottom and you'd hopefully feel considerably better if you got them above mid range 🤗
We need reference ranges/ full results too please!
Results likely too low and/ or T4 to T3 converson poor
Analysis of full results will point the way forward
Hi Agatha 1977,
It's not possible to know what these results mean for you without the ranges - B12 for example could potentially be quite low - or it might not.
I've learned by coming on this site that doctors can often look at the ranges only (ignoring your symptoms). Just because you're in range doesn't mean that number is at the right level for you as an individual.
You might need to be higher or lower in that same range than someone else, in order to be well.
It's kind of obvious when you think about it, and quite logical, lord know why they don't have the common sense to see it!
If you can include the ranges people here will be able to really get going on helping you.
Best of luck with it all🌸
My last TFT was in May 2023 and the results were:
TSH - 2.98 mu/L
T4 - 13.7 pmol/L
T3 - 4.2 pmol/L
Again no ranges ……but shows you were/are under medicated
Was this a private test ?
Was test early morning, fasting and last dose levothyroxine 24 hours before test
Do you have online access to these results as we need all the ranges :
Going from what you have supplied :
Generally speaking we tend to feel at our best when our T4 is in the top quadrant of it's range and by most ranges your T4 is too low as is your T3 :
Once on any form of thyroid hormone replacement we generally feel better when the TSH is down under 2 - likely under 1 - and towards the bottom of its range -
and this happens as the dose of T4 is increased - the TSH goes down -in a reciprocal manner.
I now know through trial and error that I need to supplement my core strength vitamins and minerals and aim for a ferritin at around 100 : folate around 20 ; active B12 75 ++ ( serum B12 - 500++ ) and vitamin D at around 100.
If you've been taking Levo for 12 years and spent most of that time on 50mcg you've been under-dosed for years.
One of the problem we all have is that doctors assume that anything in range is "normal". But, suppose the reference range was 0.5 - 4.5, there is a world of difference between how you would feel with a result close to the bottom of the range, or mid-range, or near the top of the range. Different doctors seem to have different ideas - quite a few of them go for mid-range and assume it is "fine". There are some sadists who think that near the top of the range is fine too, and that just makes people with thyroid disease feel even worse.
You should find this link of interest :
web.archive.org/web/2004060...
It shows that the distribution of TSH in a healthy population is highly skewed and most people have a TSH round about 1.25 or thereabouts, not up around 3 or 4 or 5. People who are NOT healthy and have hypothyroidism often need a TSH lower than the healthy population to have a hope of feeling well.
The problem comes with doctors thinking that low levels of TSH are damaging. They mix up a low level of TSH with hyperthyroidism, (i.e. with very high levels of Free T4 and Free T3) and ignore the plight of people with hypothyroidism on treatment who may have a low(ish) TSH with quite low levels of Free T4 and Free T3. It isn't the TSH that matters to someone with thyroid disease, it is the levels of Free T4 and even more important is the level of Free T3. T3 is the active thyroid hormone needed throughout all the cells and organs of the body.
SlowDragonAdministrator
B12 - 269ng/L
Ferratin - 10.6 Micog
Folate - 10.6
Vit D - 55 nmol/L
Obviously need ranges on results
Ferritin looks severely deficient
In most ferritin ranges result below 30 is deficient
Aiming for ferritin at least over 70
Request FULL iron panel test for anaemia
Vitamin D and B12 both definitely too low
Folate need range
SlowDragonAdministrator
You can start supplementing vitamin D now
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice year
NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
SlowDragonAdministrator
Would suspect you have Low B12 symptoms with such low B12 result
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Clearly I’ve got a lot more learning to do! Here are the ranges for my latest results -
TSH - 0.85 mu/L (range 0.30 - 4.20)
B12 - 269ng/L (range 180 - 900)
Ferratin - 55.6 Micog (range 10 - 200)
Folate - 10.6 (range 3.0 - 20.0)
Vit D - 55 nmol/L (range 50 - 250)
Agatha1977
Ferratin - 10.6 Micog
Ferratin - 55.6 Micog (range 10 - 200)
Both of these results taken from this thread. There is a vast difference. Which of these results is correct?
and the ranges for the T3 that was at 4.20 - and the range for the T4 that was at 13.70 please :
The correct Ferritin reading is 55.6. Realise I’d put the same figure for ferritin and folate in my first post.
Sorry....but we still need ranges for FT4 and FT3 in order to see how your thyroid is functioning
Comments will follow once we have reference ranges
Approx guide...essential nutrients
Vit D is miserably low at 55nmol/L....optimal is 100 to 150nmol/L
Vit B12 ...top of range for total B12
active 100+
Folate... at least half way through range
Ferritin ....90 - 100ug/L for thyroid function
Your symptoms suggest undermedication/ thyroid hormones but full lab results will tell us more
Hi all. Thanks so much for taking the time to respond, I really appreciate it. I know I have neglected my health in the past few years, and have found it hard keeping on top of everything with a full time job and 2 kids to keep in check. When you say “full lab results” I’m not sure what this means? The only blood tests I’ve ever been offered by the GP are a Thyroid function test (which gives TSH, T3 and T4 readings) and a full blood test which looks at various other levels. Is it the full blood test you’re referring to? If so, the last one I had was in July and I can access via the NHS App. Thanks again.
What we're missing is the lab ranges for the fT4 and fT3 tests ... for fT4 13 range could be [12 - 22] or other , eg. some fT4 ranges are [7.9-14 ] so you can't tell if 1'3 ' is low without knowing the lab range used .
Since the full thyroid test in may , (TSH / fT4 / fT3 ) GP has run another TSH test in July which was lower 0.85 [0.3 -4.2]
However, even though TSH is lower, that doesn't mean the dose is enough .. it may be that a further increase is still needed to resolve symptoms ~ this is easier to argue for if fT4 and fT3 result re known and can be shown to be relatively low in range .. we don't know what fT4 and fT3 were when TSH was 0.85
lower TSH suggests fT4 was higher on that occasion, and the Lower TSH result at the moment makes it harder for you to persuade GP to try an increase dose ( it would have been easier when TSH was still over 2 ... however, see list of recommendations below, if you push hard you may still be able to persuade GP to try a small increase to 75/100mcg on alternate days (87.5cmcg ) or 100mcg.
What time of day was test done that gave TSH result of 0.85 ? ~ early am gives highest level , later in the day gives lower (lowest around 1-3pm) always get TSH test done early a.m. if poss to give higest results
healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower-in-range
p.s be aware , labs have limits on 'repeat TSH testing' when last one was in range, so GP may not be able to redo TSH / fT4 / fT3 until 3 mths from July
Hi there. When I had the blood test in July this year, my GP did not test my T3 and T4, so I don’t have this information to compare against the TSH result. The last TFT test I had which tested T3 and T4 was from May 2022. Results from then were:
TSH - 2.98 (range 0.3 to 4.2)
T3 - 4.2 (range 3 to 5.4)
T4 - 13.7 (range 9 to 19)
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