Hi there....I am new to this group. I was diagnosed 7 years ago with Underactive Thyroid. Started on 50 mgs of Levothyroxine....then 75mgs and been on this dose ever since. I feel no better today than I did when I got diagnosed 7 years ago. Throughout the years I have asked for my medication to be increased as I have increased it myself to 100 mgs and sometimes 125mgs and I felt better....less tired and managed to lose a bit of weight but each time docs say no and put me back down to 75mgs. I have seen specialists and say that my bloods show I need 75mgs. Had recent bloods and all they show are....Serum TSH level 0.33 miu/L(0.2-4.0) I have no idea if this is ok-there is no other info....no info on T3. I have asked my gp many times about T3 and always been told that I cant have that tested as they dont treat T3. They tell me my T4 converts to T3 so I dont need that checking???? I once saw a private hormone specialist and he told me my T3 was zilch and prescriped medication but it was too expensive so I had to go back to my gp who dismissed this info and said all I needed was 75mgs of Levothyroxine. To date I feel so tired...weight stuck no matter what I do and joint pain. I feel like I am hitting a brick wall with my gp!
Recent resultd: Hi there....I am new to this... - Thyroid UK
Recent resultd
Are you in the U.K.?
First step is to get FULL Thyroid and vitamin testing
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, or if under medicated
About 90% of primary hypothyroidism is autoimmune thyroid disease
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)
Is this how you do your tests?
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
Thriva also offer just vitamin testing
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...
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...
Optimal vitamin levels helps improve conversion of Ft4 to Ft3
Come back with new post once you get full thyroid and vitamin results
Meanwhile email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 ....
But before considering adding T3 we need optimal vitamin levels and levothyroxine dose as high as possible.
Thankyou for all the info. Yes I am in UK. Each time I question my medication my gp....and I have seen many different ones over the years....all say the same thing.. that going by my bloods... the dosage is fine and basically I have to put up with feeling not well as nothing more can be done. Its more difficult now with Covid 19 as my problems are not an emergency. My bloods were due just before lockdown but I only had them done a week ago so 7 months over due but everytime I tried to get them done I was told to wait. I will go armed with all the info you have given me and see what happens.
Thousands upon thousands of U.K. patients forced to get tested privately to make progress
Did you do this recent test 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
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
Please add country to your profile
Rarely do GP’s test more than TSH ....obviously completely inadequate
I will request my results. I take HRT and supplements of Selerium as I read this was good for thyroid function. I think I eat all the wrong foods too....lol....like kale/ broccoli/ cauliflower!!!!!! I put over a stone on and even after doing the extreme diet of Cambridge shakes and bars for 3 weeks(600 calouries a day) I gained 2lbs!!!!!!
Dieting generally a bad idea when hypothyroid
Shakes are usually terrible as most contain soya. All thyroid patients need to avoid ALL soya including soya lecithin. Read all labels
Look at Mediterranean style diet, rich in protein and good fats...lower carb
Obviously essential to know if cause of your hypothyroidism is autoimmune thyroid disease...as 90% primary hypothyroidism is autoimmune thyroid (aka Hashimoto’s) it’s likely
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
healthcheckshop.co.uk/store...?
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
HRT almost always results in needing dose increase in levothyroxine
I have just accessed my records online and last year I had a full blood count. It included for my thyroid so I will write down exactly what it says as not sure what you need. Ferritin(XE24r)110ng/ml(10-322)
Folate level(42U5)13.8ng/ml(5.4-24)
Serum TSH level(XaELV)0.26mui/L(0.2-4)
B12 level(XE2pf)288ngl/L(211-911)
Vitamin D level(Xabo0)56nmol/L(75-250)
And thats basically it. It also says...No action needed...all normal. I was kept on 75mgs of Levothyroxine and not told to take any supplements even though I explained I felt tired and couldnt lose weight. This was done last July and on my notes from recent tests done last week...although no info as above it just says ...all normal no action taken.
So ferritin and folate were ok
B12 and vitamin D too low
B12 minimum of 500 recommended
Vitamin D minimum of 75nmol
As nether are deficient NHS will not treat or consider as relevant
NHS only test and treat deficiencies
Suggest you retest now as it’s a year later ...before starting any vitamin supplements
Likely to have dropped further
Vitamin D
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...
Importance of vitamin D for fighting Covid
moxafrica.org/post/the-vita...
Thankyou so much....I really appreciate all this help.
Recommend you get B12 and folate retested BEFORE starting any B vitamins
If B12 is still under 500 and/or folate under half way through range...
supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
b12deficiency.info/signs-an...
If B12 result under 400 then taking a B12 supplement and a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
Also I have never been told to have bloods done early in morning before food and not to take my Levo until afterwards.....my gp just booked app with the nurse and I went around 2.30pm having taken 75mgs of Levothyroxine at 8am that morning.
Most GP’s completely unaware of importance of timing of tests
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.
Many people find Levothyroxine brands are not interchangeable.
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.
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
Are you currently taking Teva?
Teva and Aristo are the only lactose free tablets
healthunlocked.com/thyroidu...
Teva poll
healthunlocked.com/thyroidu...
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)
Yes my brand is Teva-I had no idea this could happen. My husband worked in Middle East and I went to stay with him and I bought Levothyroxine over the counter and brand name was Merk. I wanted to have some back up tablets as it was when we had a shortage here in uk with certain drugs....last year. Should I ask to go on another brand?
Well obviously you don’t know if Teva upsets you or not if only ever had it
But bear it in mind when dose is increased up to 100mcg .
The difficulty comes when two things are changed...we see this all the time dose is increased and brand changed....
Obviously easier to assess if change brand while on same dose
Full list of brands available and doses
healthunlocked.com/thyroidu...
Very true......I wont mention intetnet or forums when I go see gp but I have already experienced the 'dismisive' look from them in the past when I have dared to ask questions!!!!! Just need to work out my plan of action.....but as I could wait weeks before I get an app I have time!
Thankyou for all your help.x
Since GP's only look at TSH, and they are told that 'below range TSH' has risks of for bones and heart, you will no doubt come up against this argument if you want to increase your dose ( which will lower your TSH further)
These posts may help you make you own mind up about the 'risks'......... everything has risks...... it's all relative ;
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
And this is the study i take my evidence from (which incidentally is one of the studies the NHS take their evidence from too, but they choose to ignore the bits they don't like )
academic.oup.com/jcem/artic...
I have had success with getting a higher dose than GP wants, by explaining that i understand and accept these risks. He's written a comment to that effect on my notes to cover his back and prescribed 112 instead of the 100 he wanted to. My TSH is below the reference range.
Thankyou so much.......this is so interesting! I have learnt so much in this one morning than ever before!
I bet you've got brain ache now tho '
x
😅😅😅
Your next challenge is to use this information without getting upset or angry at the GP's ...... which would obviously lead to a diagnosis of 'Hysteria'
And manage to do it without using the word's 'internet' or 'forum' which will lead to a diagnosis of 'being too stupid to use any discernment about where you do your research '
As tattybogle says
Never ever mention “internet” or worse still “Internet forum” to any medic....instantly will be categorised as hypochondriac or hysterical
Many, many people on levothyroxine when adequately treated have extremely low TSH
academic.oup.com/jcem/artic...
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
Thankyou for all your help.x
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