I was diagnosed with underactive thyroid in 2017 and was given 20 micrograms a day. I had a lot of pain in legs and feet. Last year I saw a thyroid specialist and the dose was increased to 50 micrograms. However, pains have now become unbearable in my legs, arms, hands and fingers. I would have thought the reason for taking the hormone was to improve my standard of life and get rid of pain? Since then have also been diagnosed with fatty liver and suspect Levothyroxine has caused it. I am now waiting for another appointment with the specialist, but what with Covid, it's going to take a long time. I have a TSH of 3, and T4 is 18.8. No idea what these numbers mean, as no one has ever explained it to me and online there is a lot of conflicting information. What would optimal be? My Vit D is currently 53, which my GP thinks is fine, but I don't feel well. Thanks for listening.
What's the point in taking Levothyroxine if it ... - Thyroid UK
What's the point in taking Levothyroxine if it is causing the same symptoms that caused me to see a specialist in the first place?
Roughly what age are you?
See different Doctor or endocrinologist
See you are based in Portugal.
The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until on FULL replacement dose.....TSH likely to be under one when adequately treated
guidelines on dose levothyroxine by weight
Even if we 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 on 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.
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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Essential to test vitamin D,folate, ferritin and B12 at leas5 annually
Frequently necessary to supplement continuously to maintain optimal vitamin levels
What’s the unit of measurement of vitamin D result?
Thanks for your info. I am back in the UK now. My Vit D level is 53. I have contacted my consultant but her secretary has a rude attitude and quite honestly have no confidence in her as a doctor. I also rang her last December to inform her that medication wasn't working. but got no reply. I'm 61 years old. I take my dose in the morning, early...way before breakfast. I have a cup of cocoa at night so can't take it then. I have regular blood tests but learned that my values are in corrolation with UK population, in this case. Do you think brain fog is typical of Levothyroxine? And night terrors/nightmares? Thanks.
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists
tukadmin@thyroiduk.org
You are EXTREMELY under medicated....yes all symptoms likely direct result
First step is to get FULL thyroid and vitamin testing
Take results with you to see THYROID Specialist endocrinologist
Vast majority of endocrinologists are diabetes specialists
Roughly where in the UK are you
(Can you update your profile country)
This site won't let me update my info. Am in Liverpool. Test results 27/7/20: TSH 3, T4 free 18.8, no FT3 tested, , no TPO or TG tested, Folate 8.2, B12 - 467, Ferratin 84. Was never told to test on an empty stomach...only in Italy and Portugal is this the norm. These results mean nothing to me.
Without ranges can't tell much
Obviously need TSH, Ft3 and FT4 tested together
Plus antibodies if never been tested
Vitamin D test via NHS postal kit. £29
Will add link later ... currently out on walk
TSH is too high
thanks for your help
To edit your profile
Click on your main page
healthunlocked.com/user/glo...
Click edit profile
Change any details - eg country
Helpful to add some profile info too.
Then...important to click save before leave profile
Do you have the range on Ft4 result?
ALWAYS do all thyroid tests as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
What vitamin supplements are you currently taking...if any?
Ft4 was never done unless it Is the one where they say your calcium is too high for it to be something? I don't take any vitamins at all.
Yes you have Ft4 result here ....you said in opening post today
I have a TSH of 3, and T4 is 18.8
Can you add the ranges ....the figures in brackets after each result. Different labs have different ranges
Eg - these are common ones
TSH 3 (0.2-4.8)
Ft4 18.8 (12-22)
What was calcium result (and ranges)
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
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
If ever back in UK
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
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 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Medichecks - JUST vitamin testing including folate - DIY finger prick test
medichecks.com/products/nut...
Medichecks often have special offers, if order on Thursdays
Thanks am in Liverpool but am unemployed and can't afford tests. Should I still email Diane about specialists? Thanks. My doc just told me to go back on statins but I don't want to. Last year my T3 was 17 and thyroid specialist prescribed 3 months of 800 iu a day of Vit D, which made absolutely no difference> Thanks
Yes List from Thyroid U.K. has some NHS endocrinologist...though waiting times are often horrendous
Last year my “T3” was 17 and thyroid specialist prescribed 3 months of 800 iu a day of Vit D, which made absolutely no difference
“T3” .....presume you meant Vitamin D ?
Vitamin D
NHS Guidelines are clear on dose vitamin D required
Vitamin D of 17nmol requires a LOADING dose vitamin D, as described below. That’s 300,000iu over 6-8 weeks. That’s 6000iu per day for 8 weeks or 7000iu per day for 6 weeks.
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol
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
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
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
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Calculator for working out dose you may need to bring vitamin D level
40ng/ml = 100nmol
grassrootshealth.net/projec...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
With your Vit D, are you also taking it's 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...
Vitamin K2 mk7 - though you would need to research thoroughly if you are on blood thinners wether you should take vitamin K2
Print out the NHS guidelines on statins ...clearly states shouldn’t prescribe statins
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.
Important to know if cause of your hypothyroidism is autoimmune thyroid disease (Hashimoto’s) by testing BOTH TPO and TG antibodies
Vitamin D is too low
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol
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...
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
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
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Calculator for working out dose you may need
40ng/ml = 100nmol
grassrootshealth.net/projec...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
With your Vit D, are you also taking it's 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...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
I am not taking any vitamin supplements whatsover. I'm in a real mess. Thanks
You are under-medicated and still hypo.
You should have been retested six weeks after going up to 50 mcg - which is only a starter dose - and your dose increased again by 25 mcg. You have been woefully neglected!
So, what do these numbers mean? Well, to start with TSH: Thyroid Stimulating Hormone. This is a chemical messager from the pituitary to the thyroid, to tell it when to make more hormone. A euthyroid TSH would be around 1 - certainly not more than 2. And, at 3 you are hypo.
Also, although a euthyroid TSH is usually around 1, hypos usualy need it a lot lower than that to be well, because the lower the TSH, the higher the thyroid hormones...
The thyroid hormones are T4 and T3.
T4 is a storage hormone that needs to be converted into T3 - the active hormone, before it does anything much. I cannot tell what your FT4 is like because you haven't given the range. Ranges vary from lab to lab, so we need the range that went with your result. But, even that doesn't tell us the whole story. You can have a good level of FT4, but it won't do you much good unless it is converted into the active form, T3.
FT3 is rarely tested on the NHS, even though it is the most important number. Being a cynic, I suspect the reason for that is so that the patient doesn't see quite how under-medicated he is! Because very often, hypos aren't very good at converting T4 to T3, so remain under-medicated even if they have a good level of T4.
I don't think your pains are due to the levo itself, I think they are due to you still being under-medicated. So, what you should be asking is: what it the point of taking a hormone if you don't take enough? And, the answer would be: none at all. Because being under-medicated can sometimes be worse than not being medicated at all. But, try and tell a doctor that! They just don't want to know. Because, basically, if there's one thing they absolutely hate, it's diagnosing and treating thyroid problems. Don't ask me why, I don't know. But, all treatment appears to be given grudgingly, as if you are imposing on them somehow. And, they put off diagnosing by surruptisiously raising the upper limit of the range, and even by ignoring the range. The NHS will now not diagnose until the TSH reaches 10, even though you're hypo when it reaches 3, as I said.
But, you don't want to read me wittering on! I'll just say, if you have any other questions, don't hesitate to ask. And, either strangle your GP until he gives you an increase in dose, or get a new GP! 
Very illuminating..thanks! Yes, have been severely neglected because I moved a few times and my gps never cared to test my TSH, despite me telling them. Am now back in Liverpool waiting to see specialist, but I don't trust her, which is not good. Covid has messed things up big time for me and a lot of people. I don't want my doc to up my dosage...I want to be sure that the specialist agrees to it. Also take Atenolol for heart and before was taking Lipitor statin...pure poison, I believe. Now have fatty liver as a result of all these meds and am in a very bad way. I loved your answer! Thanks so much!
Not necessarily the meds that have caused the fatty liver. Just being hypo can cause it.
Is your cholesterol still high? If so, then it would indicate that your FT3 is too low. Low T3 is usually the cause of high cholesterol, and statins are not recommended for hypo, nor for women in general. They don't do anything for women. And, in any case, high cholesterol is not a problem. It doesn't cause strokes or heart attacks.
You are probably right not to trust the specialist - and, first of all, what is she a specialist in? Thyroid specialists are as rare as hen's teeth. Most endos are diabetes specialists with little to no knowledge of thyroid. So, see her by all means, but double check everything she tells you. And, what you want to ask her is if you can have a 'trial' of T3 - which is a total misnomer because it's usually for three months, and it would take a lot longer than that, and several increases in dose, to know if it suited/helped you. But, it's a start.
Hi again. I don't know what FT3 is! My cholesterol is HDL 2, LDL 2.4 and ratio 2.6. My doc just told me to go back on statins! omg. My endo is a breast cancer specialist as well. I need to look for a thyroid specialist in Liverpool, a real professional. I can't take all this in, Greygoose as I've got brain fog as haven't slept for over 3 years. Thanks. Now doc saying my FIB-4 is 1.35, rather too high so should see liver specialist, It's all over my head.
You might find this of some use in getting to understand things:
dropbox.com/s/6lqudgmyhk7ru...
AND
Abbreviations and Acronyms
Some years ago, I started compiling a list of many of the abbreviations and acronyms that appear here regularly. The idea was to make it relatively quick and easy to look up abbreviations and acronyms without being waylaid by the many irrelevant possibilities web searches tend to return.
I continue to update the document quite frequently!
dropbox.com/s/2423slilh0or6...
You might never have downloaded a copy, or not for some time, perhaps months or years If so, I suggest you download a copy and save it (or a shortcut) somewhere easy to find.
Please, if you think there is anything missing or wrong, let me know. Post on the forum or send me a Private Message.
If I have posted this because you asked about an abbreviation or acronym, please take this as intended, a way of helping you now and into the future. Not a criticism that you asked.
Thanks for this.
I understand the brainfog, but I did explain about T3 above. It's the active thyroid hormone.
Just because your doctor wants you to go back on statins, there is no law that says you have to. It's your body, you can do what you like with it. If you don 't want to take the statins - and I would strongly advise you not to - don't take them. It's as simple as that. After all, your doctor gets the financial benefits from prescribing statins. All you get is the side effects! And, you're in far more danger of a heart attack taking statins, and from low cholesterol , than you are from high cholesterol.
Suggest you read posts every day....slowly get to grips with how thyroid works and levothyroxine
How to read blood tests
Poor sleep is extremely common hypothyroid symptom
Poor sleep also linked to low vitamin D
Ask GP to test B12, folate and ferritin
I have the results of B12, folate and ferritin done in July. Good advice, thanks. Can't understand all this stuff.
What were these results ? (And ranges)
Our brains need a lot of thyroid hormones to function...especially Ft3 the active form of thyroid hormone
Levothyroxine is T4 - Called T4 as it has 4 atoms of iodine....we can’t use T4. Before we can use it, it has to be converted into T3 by dropping one atom of iodine
called Free T3 when it’s available to be used in cells - written as FT3.
T4 - similarly - test is Free T4 - written as Ft4
When under treated.....levothyroxine dose too low ....Ft3 is very low ....hence brain fog and struggling to think or take in or retain information
This short film explains thyroid hormones fairly simply
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Feeling desperate :(
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