Hello everyone! I am looking for advice about my thyroid. I am on Levothyroxine 50mg over a year right now and my blood test still shows high cholestero even I am on good diet. Also my insuline is high.After my last test TSH and T4 are again high. Thinking about to try NDT
Looking for advice or even recommendations for good doctor.
Thank you!
Have you got your results, in figures, with reference ranges?
Yes I do and all is too high.
Thank you for your reply. My T3 - 3.64pmol/
T4 - 17.50 pmol/
Triglycerides 223mg/dl
TSH - 4.820 pU/l
Insulin - 16.40
Glucose 4.6 mmol/L
Cholesterol always high 5.7
Globulin beta 2%(lipids) also high 7.0%
My doctor increased for 100 mg of Levothyroxine but I haven't felt well. Do we drop back for 50mg a day.
Also I feel sometimes tired with a bit of headaches. Also my period is getting irregular so not sure if Menopause is kicking as I am 44 yrs old now. Also insuline is too high. Even I am not eating sweeties. I don't have Polycyclic ovarian syndrome . As that has been checked.
Looking for good Endocrinologist as it's very difficult to find one.
Otherwise I am exercising every day and trying lose some weight. Which is very hard.
Cholesterol levels have nothing to do with diet. High cholesterol is often due to low FT3. If you've been on 50 mcg levo mono-therapy for the past year then it's a sure bet that your FT3 is too low. Have you had it tested at all?
Before you start thinking about NDT - which is hard to procure, almost impossible to get prescribed and doesn't suit everyone - you should at least give levo a fair trial by being on the right dose. 50 mct is a starter dose and unlikely to be the right dose for anyone. But, without seeing your latest numbers - results and ranges - it's impossible to say.
Most important questions: how do you feel and do you have Hashi's?
Thank you for your reply. My T3 - 3.64pmol/
T4 - 17.50 pmol/
Triglycerides 223mg/dl
TSH - 4.820 pU/l
Insulin - 16.40
Glucose 4.6 mmol/L
Cholesterol always high 5.7
Globulin beta 2%(lipids) also high 7.0%
My doctor increased for 100 mg of Levothyroxine but I haven't felt well. Do we drop back for 50mg a day.
Also I feel sometimes tired with a bit of headaches. Also my period is getting irregular so not sure if Menopause is kicking as I am 44 yrs old now. Also insuline is too high. Even I am not eating sweeties. I don't have Polycyclic ovarian syndrome . As that has been checked.
Looking for good Endocrinologist as it's very difficult to find one.
Otherwise I am exercising every day and trying lose some weight. Which is very hard.
I did say we needed ranges. Results are meaningless without ranges because they vary from lab to lab. However, if the range for your FT3 is the one we often see - 3.1 - 6.8 - then your FT3 is very low and it's not surprising you have high cholesterol. Your TSH would suggest this is the case. However, I cannot even guess at the range for the FT4.
My doctor increased for 100 mg of Levothyroxine but I haven't felt well. Do we drop back for 50mg a day.
Oh dear. Another cluless doctor. Keeps you on a starter dose for a year and then increases by too much! Increases should not be more than 25 mcg every six weeks. Your body probably doesn't like that huge increase and that's why you haven't felt well. I think, if I were you, I'd go down to 75 mcg for six weeks, and then retest.
With your low FT3, I really don't think exercising every day is a good idea. And it won't make you lose weight, anyway. Just gentle walking to stop you rusting up, but nothing more strenuous. If all your limited T3 is being used to exercise, there won't be much left for anything else.
Do you have Hashi's? Have your antibodies ever been tested?
Thank you for your reply. My recent Endocrinologist didn't do antibodies test.
Also NHS Endocrinologist wants to send me to dietitian. So not sure what to think anymore. It's very difficult to find good Endocrinologist in London
I don't much understand with the ranges you mentioned.
I will try 75mg from tomorrow.
Also do I need to do more blood test? Or only antibodies?
Thank you
Lucie
As I said, lots of doctors refuse to admit that being hypo makes you put on weight. They insist it's due to over-eating, when it really isn't. I doubt if a dietitian would help or know anything about thyroid. So, whatever advice s/he gives you, do check on here that it's appropriate.
It's difficult to get a good endo anywhere in the world, not just London!They are 99.9% diabetes specialist who know next to nothing about thyroid.
Ranges are usually found in brackets after the results.
e.g. FT3 4.5 (3.1-6.8)
We absolutely need them to make sense of your blood test results because they vary from lab to lab, so we need those that came with your results.
For blood tests, it's good that you've had TSH + FT4 and FT3 - they aren't always done. But, you also need:
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
to get the full picture.
Before booking any consultation you need FULL thyroid and vitamin testing
What brand of levothyroxine is 100mcg
How long have you been on this dose
As greygoose has said …..you were left far too long on 50mcg ….then dose increased too much
Typically we usually increase in 25mcg steps otherwise it can be “too sudden a change “
ESSENTIAL To test TPO and TG antibodies at least once
Test folate, B12 and ferritin at least annually
Test vitamin D twice year
Likely to have low vitamin levels if been left on inadequate dose levothyroxine for a year
What vitamin supplements are you taking
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 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
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.
Thank you 😊
Thank you!
I am on 75mg Levothyroxine from Saturday morning starting this dosage. Then I will do blood test again for everything you recommend.
I have got few little nodules around my thyroid.
Supplements which I am taking is usually vit.D3 and See Moss(few mg only because I am on the Levothyroxine)
Also vit. B12 and Fish oil
My last results didn't come good at all.
But with my healthy diet and nearly having plenty walks every day I feel relatively ok.
Unfortunately this seems like long way to go as I don't have luck with Endocrinologist 😕
Which brand is your 100mcg
Is it same brand as 50mcg
Many people find different brands of levothyroxine are not interchangeable
How long have you been on 100mcg
I would test BEFORE reducing dose
And Approx how much do you weigh in kilo
Retest 6-8 weeks after any dose change or brand change in levothyroxine
SeaMoss contains iodine, not recommended for anyone on levothyroxine. Levothyroxine contains all the iodine you need. Iodine supplements can exacerbate hypothyroid
When hypothyroid we develop low stomach acid, poor nutrient absorption and low vitamin levels as direct result
Poor vitamin levels has nothing to with how good or bad your diet is
Please add most recent vitamin D, folate, B12 and ferritin results
I am on levo 50 mcg from TEVA ( because I am lactose intolerance) My weight 95kg at this moment
Ferritin results 59ng/ml
Vit. D 40ng/ml
Vit. B12 320 pmol/L
My weight 95kg at this moment
so would recommend you stick on 100mcg
Guidelines on eventual dose required is approximately 1.6mcg of levothyroxine per kilo of your weight per day …..that would be around 150mcg daily
How long have you been taking 100mcg levothyroxine
Teva brand upsets many people.
You may need to try different brand
Aristo is also lactose free and is mannitol free as well
Aristo only available in 100mcg tablets currently
Aristo now called Vencamil
healthunlocked.com/thyroidu...
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
B12 is far too low
No folate result ?
How long have you been supplementing B12 and exactly what are you taking?….B12 is very low for someone on supplements
Are you not in U.K. as vitamin D measured in ng/mL?
Ferritin ok …but look at increasing iron rich foods in your diet to improve to 70-100
Thank you for your reply. I cannot take 100mg of Levo as that's make me feel unwell at this moment.
I don't feel unwell on TEVA. To be honest my weight finally going a bit down. It's not significant big weight loss but after a year to taking TEVA my body is finally losing some weight.
I am based in the Uk.
The results what I sent you are the most recent one.
I will do more blood test 8 weeks time and hopefully will be lucky to find new Endocrinologist as I think the current one is not good as they told me.
very common to initially feel unwell as dose is increased, that’s why it’s customary to only increase in 25mcg steps
Likely to need further increase in another 3-5 months
So if in U.K. vitamin D is normally measured in nmol
are you sure vitamin D result is 40ng/mL …..not 40nmol?
40ng/mL = approximately 100nmol = good
Thank you for your reply. Apologise for the mistake. Yes you are right
so what’s the unit of measurement for your vitamin D result?
If it’s 40nmol it’s too low and GP should prescribe 1600iu everyday for 6 months
But you’re likely better off self supplementing at higher dose
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
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, 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 yearly via 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
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
Thank you for your reply. GP here is waste o time.
I am not using NHS website sorry.
I already struggling here in the Uk to find good Endocrinologist and just find out that over a year to pay for private doctors is waste of money and time without proper results.
So will keep on supplements I am taking and will keep looking for a good doctors together keeping eye on my blood test.
Have a good weekend
Retest TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12 after 6-8 weeks on 100mcg (so in 3-4 months)
Likely to see you need further increase in levothyroxine then
Aiming for all four vitamins at optimal levels
Vitamin D at least over 80nmol
Serum B12 at least over 500
Folate near top of range
Ferritin at least half way through range
As you are lactose intolerant are you on lactose free diet or dairy free diet
Many thyroid patients need to be dairy free (rather than just lactose free)
Also very common to need to be gluten free, but get coeliac blood test done BEFORE trialing
I am on lactose and dairy free products and I don't eat gluten products at all.
How low was B12 BEFORE taking any supplements
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
were you tested for Pernicious Anaemia before starting on B vitamins
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate daily B12 supplement and then add a separate daily vitamin B Complex a week later
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
Highly effective 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...
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
Hi Lucilla,
So sorry to hear you still aren’t feeling great! I was on levothyroxine for approx 6 years and never felt any better. My doctor tried t3 as well to see if that would help and it didn’t. I have just started on NDT as it feels like the only option now unfortunately 😢
Thank you for your reply. Unfortunately Endocrinologist not very keen to prescribes NDT in the Uk.
So I am kind of stuck right now 😒 and not sure what to do.
Also looking for new Endocrinologist.
Hey, i know i had that problem too. I had to go privately because it seems to not be used in the UK.
(Edited by admin);
Zoe
Get full thyroid and vitamin testing done after 2-3 months on 100mcg levothyroxine BEFORE booking any private consultation
Likely to need further increase in levothyroxine BEFORE considering T3 or NDT
List of thyroid specialists and endocrinologists who will consider adding T3 or NDT
Starting NDT
NDT Advice 
Advice on hypothyroidism test results. 
NDT advice
