Hi iv been taking levothyroxine for 6 years now , why am i getting all underactive thyroid symptoms more now , when my bloods show a normal reading apparantly, feel so tired and achy , energy levels at a low big time . 😒
Blood update reading : Hi iv been taking... - Thyroid UK
Blood update reading
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Pixie6
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Because that normal level is not your normal level . If you wear size 5 shoes would you be happy wearing a size 3 or a size 7? They are normal sizes too.You need to get your blood results and see what has been tested and exactly what the results were. You can't go on hurting your feet with the wrong size if shoes 🙂
SeasideSusieRemembering
Please post your latest test results including the reference ranges (ranges vary from lab to lab so we need your lab's ranges to interpret your results) and we can help.
If you don't have your results then if you are in England your surgery may offer online access to them, if so register for that. If not then ask the receptionist (never the doctor) for a print out of them. Don't accept hand written or verbal results, mistakes can be made, it needs to be a print out and the results, with reference ranges, will be on there.
Ideally we need to see results for
TSH
FT4
FT3
Thyroid antibodies
but they may not all have been done.
Also, for thyroid hormone to work properly we need optimal nutrient levels so if you have them so post
Vit D
B12
Folate
Ferritin
Tsh
Pixie6
Is TSH all that is tested?
Have FT4 and FT3 ever been tested?
What about Thyroid antibodies?
Looking at your results, you have never been optimally medicated.
Most doctors just look at TSH and use that to adjust dose, most think that if your result is somewhere within the range then everything is fine.
TSH is useful for diagnosis but once on replacement thyroid hormone it becomes more or less redundant, it's the FT4 and, more importantly, the FT3 results that are what we should use to see if we are optimally medicated.
The aim of a treated 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 that is where you feel well.
Both of the following show that it's necessary to test FT4 and FT3:
From the British Thyroid Foundation:
btf-thyroid.org/thyroid-fun...
How can blood tests be used to manage thyroid disorders?
.....
Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.
There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.
.....
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 recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of this article from Dionne at ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
Do you always do your tests under the exact same conditions every time? That is the only way they can be compared. Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
How much Levo do you take?
Do you take any supplements? If so, what and the dose?
You also need to get those key nutrients tested, low levels or deficiencies can have symptoms that overlap with symptoms of hypothyroidism. Muscle and joint aches and pains can be low Vit D, fatigue can be low ferritin.
T4
T4
Pixie6
So just taking your July 2021 results
TSH: 2.54 (0.27-4.20)
FT4: 15.6 (11-21.2)
Your TSH is too high, should be 1 or below.
FT4 is 45.10% through range - should be in the upper part of it's range, perhaps around 70-75% which would be around 18.5 or more with your range.
FT3 needs to be tested with FT4 and TSH when TSH gets down to 1 or below to see how well you convert T4 to T3.
You are undermedicated and need an increase in your dose of Levo - 25mcg now, retest in 6-8 weeks, repeat if necessary. I have given you articles above which should support your request for an increase in your dose.
B12 and folate are good, they suggest you are supplementing - are you? You didn't answer the question about whether you are taking any supplements.
What about Vit D and ferritin? Have they been tested, if so post results with ranges.
always have had low platelet count 447x10^9/L
Are you sure that's low? What is the range? My surgery's range for platelets is 150-400 10*9/L, my level is around the 300ish mark and mine aren't considered low.
What has your GP said?
If you have low platelets in your blood, your ability to form clots and stop bleeding may be impaired. Autoimmune conditions can cause low platelets, you didn't answer the question about thyroid antibodies. Have you had them tested, were they positive confirming autoimmune thyroid disease? Do you have any other autoimmune condition? Some medications can cause low platelets, eg Warfarin, do you take any other medication?
Anything else from your full blood count?
Thank you for this ! I ll ask doc about thyroid anti bodies amd autoinmue thyroid as i have no idea . No other medicine taken apart from hrt , and iv always taken b12 and vit d , and was told my vit d was good . Im speaking to a doctor on Saturday and see what he says , thanks again 🧘🏼
Last b12 was 1214pg/ml and folate 22.5ng/mlI always have had low platelet count 447x10^9/L
Hello Pixie and welcome to the forum ;
Well I'm sure you haven't stood still these past 6 years and as we move through the years life stresses and strains can take their toll on out bodies and we find we may need to adjust our medication accordingly.
In order to offer you considered opinion we do need to know what your thyroid blood test results are : If in primary care you may just have the yearly thyroid function test performed, which in itself, doesn't say much anyway, once on any form of thyroid hormone replacement.
If you go into the Thyroid UK website who are the charity who support this forum you will find everything you need to know about all things thyroid and there is a page dedicated to private companies who will run a full thyroid blood panel for you, if your doctor is unable to action this for you.
Ideally we need a blood test to for a TSH, T3, T4, antibodies, inflammation, and ferritin, folate, B12 and vitamin D - then just start a new pot with the results and ranges and we then can advise accordingly.
Please arrange the blood test for an early morning appointment and do not take your T4 for that day, fast overnight and just take water until after the bloods have been done and then take your medication.
Always take your medication on an empty stomach and wait about an hour before you eat or drink anything.
What symptoms are you currently dealing with, and again, on the Thyroid UK website there is a list of hypothyroid symptoms you may like to browse through so you have some confirmation that " it " isn't all in your head.
Thank you for this ✅😉
SlowDragonAdministrator
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
do you have any actual blood test results?
if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Far too often only TSH is tested and is completely inadequate
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.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
If you can get GP to test vitamins and antibodies 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...
NHS easy postal kit vitamin D test £29 via
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Thank you for your information its been very helpful😊
When correctly treated you might find low platelet levels improve
pdsa.org/low-platelets-othe...
On levothyroxine we need high enough dose to bring Ft4 at least 60-70% through range, essential to test Ft3 as well
Do you ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
How much levothyroxine are you currently taking?
Request 25mcg dose increase in levothyroxine and bloods should be retested 6-8 weeks later
Do you always get same brand levothyroxine at each prescription?
Hi no test was nt early and and took medication and and had eaten, did nt know not to , yes always same brand - on 50 micrograms at present, hope doc puts it up 25 now and i start to improve , feel like iv changed so much as a person in the last 6 years .thanks again
Only ever test early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
What vitamin supplements are you currently taking
Important to stop taking any supplements that contain biotin a week before all blood tests
Oh and my vitamins are b12 vitamin D and glucosamine and a multi vitamin. 😅
Multivitamins are never recommended on here. At best waste of money. Usually cheap poorly absorbed ingredients
Likely to need to contain iodine
Probably contains biotin…..Stop any supplements that contain biotin a week before all blood tests
Hi Slow Dragon, so doc says im not undermedicated but still gave the increase, but said to take every other day , but i said i would try every day and see how i go , test in 8 weeks . When i questioned about fasting and no meds before test he said , no i v never heard that one , and said you do want you want , he was nt happy .
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 LevothyroxineNote that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
TSH daily variation
healthunlocked.com/thyroidu...
important when in day you test TSH ....
researchgate.net/publicatio...
“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”
“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”
ncbi.nlm.nih.gov/pubmed/252...
TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.
Most medics are unaware of relevance of timing of tests ….and HATE patients knowing more than them
Best to just test correctly and not discuss
on 50 micrograms at present, hope doc puts it up 25 now and i start to improve
50mcg is only the standard starter dose and dose increase slowly upwards in 25mcg steps
So you were left 6 years on only a starter dose ….unbelievable incompetence
Approx how much do you weigh in kilo
guidelines on dose levothyroxine by weight
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
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...
gp-update.co.uk/Latest-Upda...
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.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Guidelines are just that ....guidelines.
Some people need more …lsome less
healthunlocked.com/thyroidu...
Which brand of levothyroxine are you currently taking
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Hi ya would you be able to caste your eye over my blood test after 8 weeks of an increase of 25 mcg , total now 75 daily , feeling much better, don’t really understand all the readings , cant see any T 3 results! Iv changed doctors so 🤷🏼♀️.C an only add one pic so will try and send the rest separately , i weigh 60 kg btw, thank you , I really appreciate d your previous advice .
Print
Suggest you retest again an another 6-12 weeks
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...
Likely to need further small increase in levothyroxine eventually
Ok ! Thanks 👍🏻Its great to feel a little more like my old self !
Second half of bloods sorry couldn’t add 2 at once
Print
You might see GFR improve as levothyroxine dose has increased
What causes the high cholesterol? Is it hypothyroidism or Levythyroxine?
Hypothyroidism
nhs.uk/conditions/statins/c...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Should see cholesterol drop as dose levothyroxine is increased
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