Morning all,first post from me.I had a call from a locum gp on Wed as I have been experiencing loud T and muzzy heads for weeks and wanted some advice.She told me I need a thyroid check as low thyroid causes lots of problems T being one.I have taken 25 mg Levo for 10 years and have had mild T in that time.My thyroid tests always comes back in the normal range but do they do a proper test or is it a basic one .My regular gp who is very good has never mentioned my headaches and T could be due to thyroid issues.Any advice most welcome.
Thyroid and tinnitus.: Morning all,first post... - Thyroid UK
Thyroid and tinnitus.
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ETHEL103
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Jaydee1507Administrator
Welcome to the group.
25mcgs of Levothyroxine is just a STARTING dose. Actually its a low starter dose as 50mcgs is often used in healthy people. The idea of treatment is to retest 6-8 weeks after a dose change, titrating upwards in 25mcgs steps until your TSH is at or just under 1. Your symptoms should then improve.
When hypo we get low stomach acid that means we cannot absorb vitamins well from our food. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3?
Have your thyroid antibody levels ever been checked?
Do you have a copy of your latest results? You are legally entitled to a printed copy, ask GP reception. In England you can get the NHS app and some surgeries can give you acess to blood results on that.
Yes I do but do not understand them.Have to have another look.
Post them here for people to comment. You need to include the range for each test - the numbers on brackets after each result. e.g Free T4 (fT4) 18.6 (12 - 22)
Thanyou will do when I get results next week.
Taken last Dec.
Thyroid check
I think my B12 is low.
B12 check
Have you had ferritin and vitamin D levels tested
Request GP test these and also thyroid antibodies for autoimmune thyroid disease
B12 and folate are low
Low B12 symptoms
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 and 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
healthunlocked.com/thyroidu...
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
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...
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
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 methyl folate supplement and continue separate B12
SlowDragonAdministrator
On levothyroxine TSH should ALWAYS be below 2
Most people when adequately treated will have TSH around or below 1
Request immediate 25mcg dose increase in levothyroxine
Bloods should be retested again in 6-8 weeks
ALWAYS book early morning test, ideally just before 9am and last dose levothyroxine 24 hours before test
Which brand levothyroxine are you currently taking
Ideally don’t change brand when changing dose. Only change one thing at a time
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
NHS England Liothyronine guidelines July 2019
sps.nhs.uk/wp-content/uploa...
Page 9
Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron
See page 13
1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Thankyou but I'm not sure what my level is as it doesn't say below 1 or 2 it says374
Also I take whatever brand the pharmacy give me.Wockhard at the .o but mostly Teva.
TSH level is the one that should be below 1 or 2
(374 is your B12 result) .
in December test, your TSH (Thyroid Stimulating Hormone) level was :
TSH 5.53 (0.3-4.8)
which means your levo dose needed increasing after that December test to bring TSH down ~preferably to around 2 or 1 , or even a bit under 1 if needed to get rid of symptoms. There is a note after that result saying "Appointment with Pharmacist" so you clearly 'should' have been contacted about this , and your dose discussed in Januaury .
Show this list of recommendations to keep TSH between 0.4/0.5 and 2 / 2.5 to your GP, and ask for a dose increase to 50mcg. healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower-
When you take thyroid blood tests in future:
Get early a.m. appointment ,preferably 9 am if possible~ to show highest TSH of the day . (ideally , don't eat breakfast first, as this lowers TSH)
Take last dose levo about 24hrs before test (delay taking that mornings dose and take it straight after test. ( testing within a few hrs of taking the tablet gives an artificially high looking fT4 result )
I did have a pharmacist call but he was only worried about cholesterol. Never even mentioned thyroid.Im so annoyed as I waited 3 weeks for that call.
excuse me while i swear....
high cholesterol is a known effect of having undertreated hypothyroidism .
treating the hypothyroidism correctly usually reduces the cholesterol without any need for statins .
.let me guess...... did the pharmacist try to get you to take statins ?
NHS information about statins and undertreated / untreated hypothyroidism :
nhs.uk/conditions/statins/c...
"Statins / Considerations :
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."
Been on statins since levo.
whoever has been monitoring your thyroid treatment needs a kick up the arse then.
rather than prescribe you potentially damaging statins , your dose of levo should have been increased appropriately. ( unfortunately the Surgery gets incentives to prescribe statins to as many people as possible .. and none whatsoever to prescribe Levo properly )
25mcg levo is an extremely small dose ( only half the usual recommended starting dose for those under 65yrs old ) most patients on levo end up needing to take somewhere between 75 -150mcg before they feel better... some need more, and a few need a bit less ,, but staying on 25mcg for years usually just leaves people in a mess and not feeling much better.. in fact it can make them feel worse than being unmedicated
.... it's just enough to lower the TSH a bit (and this slows down the thyroids own attempts to make T4 and boost the amount of T3) , but it's not enough to replace the T4 and T3 they are unable to produce for themselves .. so on 25mcg you can end up with less T4 and T3 than you started with.
This explanation may come in useful : healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish
SlowDragonAdministrator
My thyroid tests always comes back in the normal range
December TSH 5.53 (0.3-4.8)
Clearly you should have had immediate 25mcg dose increase in levothyroxine after this test result
Levothyroxine doesn’t top up failing thyroid. It replaces it
Standard starter dose levothyroxine is 50mcg and dose is typically increased slowly upwards in 25mcg steps over 6-18months until on full replacement dose…..usually around 1.6mcg levothyroxine per kilo of your weight per day
Likely to need further increase in dose after next blood test
Thankyou,I w ill take my last results to show to nurse.No wonder I'm feeling rough.Why have i been left like this for years.?
The same reason there’s over 130,000 members on here….vast majority in U.K.
Management of thyroid disease is poorly understood by GP’s can be terrible
You need to take control
Read posts on here regularly and learn all about how to manage this and get dose levothyroxine increased and vitamin levels tested and at optimal levels
Hi ETHEL103
Join the club!!! I have been left on a small dose of Levo for 6 years and now suffering various symptoms and feeling not right. From my experience depends on GP. Unfortunately mine have proved to be not up to treating thyroid issues as long as you in reference range. I also now have loud Tinnitus in both ears. I have had to resort to seeing a private Endocrinoogist next week.
Hope your GP surgery is going to be more helpful.
SlowDragonAdministrator
High cholesterol directly linked to being on too low a dose levothyroxine and will improve naturally as dose levothyroxine is increased
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.
SlowDragonAdministrator
guidelines on dose levothyroxine by weight
Even if we frequently only start on 50mcg (starting on 25mcg if over 65 years old) and 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...
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-...
NHS England Liothyronine guidelines July 2019
sps.nhs.uk/wp-content/uploa...
Page 9
Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron
See page 13
1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
Graph showing median TSH in healthy population is 1-1.5
SlowDragonAdministrator
Having been left very under medicated for years you may need to increase from 25mcg SLOWLY
Cutting a 25mcg tablet in half to add initially for 6-8 weeks before increasing to 50mcg daily
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
Northstar levothyroxine being phased out this month
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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)
Aristo (currently 100mcg only) is lactose free and mannitol free.
March 2023 - Aristo now called Vencamil
healthunlocked.com/thyroidu...
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
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.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
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...
markvanderpump.co.uk/blog/p...
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
Lots of very helpful comments thankyou all.
Sorry to hear about your thyroid issues and your T. I developed T last September/ October time and it was horrendous. I also had a compressive feeling inside my ears which is quite distracting. Fortunately it has been a little better as I've upped my dose of T4 and now T3/T4.
All of my other hypo symptoms are still quite prevalent though. When I have good days, which is rare, my T is hardly noticeable. So for me it's undoubtedly a symptom of being hypo.
Lots of good advice in the previous posts. If you can follow that then you will he off to a good start. I think a full thyroid blood planel with an understanding of the results and getting to grip with your diet is great advice.
Just another note in the T. It is a symptom of low iron / ferretin levels. So this maybe worth looking into.
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