hello, just looking for any advice. My gp just keeps increasing my levothyroxine I’m now on 175mg and my levels are not improving at all.
I have reduced processed foods and have had eaten gluten free for two years.
TSH: 18.2
Ft4 : 14.6
Ft3 : 4
TPOab: 410
TgAB: 320
The gp told me today that it is what it is. People are living longer and it’s because im nearly 40, also its just one of them things and compared it to .. well why do some people have diabetes it’s just unlucky… I’m a bit stunned 😳
Sounds like a total dunce you have there! Ask for an Endocrinologist referral
Worth putting in a complaint too!!
Haha your comment made me laugh. My gp is testing my levels again and I’ll wait and see what the next instalment of rubbish they come out with. I don’t think I’m wrong to ask maybe what will be triggering these high levels?
Good 😁 It could be that you have an absorption issue and actually T3 would be worth a try as this is the active hormone
Do these ranges look right?
Free T4 (fT4) 14.6 pmol/L (12 - 22) 26.0%
Free T3 (fT3) 4 pmol/L (3.1 - 6.8) 24.3%
Yes these are the ranges on my results
So you can see how low you are generally need both at least above 50%
Can I try and increase these myself? Sorry for the questions
Only by further increasing your dose of T4 but you are already on quit a high dose so really needs looking into
Ask away it's how we all wised up 😉
Thankyou, I’ve started doing my own research as the drs are just interested in trying to sort the symptoms rather than the cause. It’s just complicated !
Sack this doctor, he isnt going to make you well. He's clearly making excuses and is out of his depth. You arent even 40 and he's writing you off. Unbelievable. On that amount of Levo and a TSH of 18 there is clearly something going on. You should be referred to an Endo for more investigation.
Thankyou. I just feel like I’ve tried to tell the drs for years I’m tired etc etc but they just don’t listen and are not interested at all. I’ll try and push to see a specialist
Some patients get put on liquid Levo if they can't absorb tablets. But its expensive so GP's are very reluctant to prescribe it. I would politely insist on an Endo referral. You might have a digestive issue that prevents you absorbing the Levo. But please dont be fobbed off, you are not yet 40 and its ridiculous to make out you're clapped out and over the hill 😉
Totally agree, what has age got to do with a failing thyroid 😕
I don't know about TgAB levels so I'll put a call out to SlowDragon RedApple
I’m not a hypo patient so apologies for wading in however I know I can’t take black seed oil and I think l-tyrosine as lowers TSH? Bad for my low TSH - Obviously do some research but just thoughts really … your GP sounds like a right pr!ck btw x
Hello Emma and welcome to the forum :
Do you know the reason for your diagnosis of hypothyroidism ?
Are these antibody readings over the ranges you have there ?
Once on any thyroid hormone replacement - the TSH needs to be maintained under 2 and if with a thyroid Auto Immune disease you will likely feel better down towards the bottom of the range.
We generally feel best when the T4 is up in the top quadrant of its range with the T3 tracking slightly behind at around 60/70% through its range.
This does look like an absorption issue - common if with a thyroid AI disease - and you may need to consider looking at leaky gut issues first before any thyroid hormone replacement works well for you.
There is a liquid T4 - so might be worth to start asking for this which probably means a referral to an NHS endo as it costs considerably more than T4 Levothyroxine tablets which I think, is all that is budgeted for at primary care level.
If your antibodies are over range - likely you have Hashimoto's and suggest you start reading up and many forum members recommend the work and research of Dr Izabella Wentz who writes as thyroidpharmacist.com
Thankyou, honestly I’ve had more helpful info on here in the last hour than I have in 8 years with the GP, from what I’ve researched it looks like hashimotos, I’ve also had a very stressful year which is thankfully coming to a close, taking alot of self care with therapy and generally being kinder to myself etc. my
On my results it states anything over 34 for TPOab is out of range and mine is 410
I asked the dr about the antibodies and was told it was pointless trying to reduce these as once you have them they will always be there and it doesn’t matter what level….
Think you have all given me the confidence that I should just research this a lot more.. the drs made me feel like it wasn’t worth it
Ok - so your antibodies are positive - so you are looking at a thyroid AI disease for which there is no cure - but of course, there is much you can do for yourself and with a little bit of effort and reading be better able to start advocating for yourself.
Leaky gut is a common issue - and first off you should get tested for celiac and pernicious anemia .
Are you taking any supplements at the moment ?
Likely need your ferriin, folate, B12 and vitamin D run and we can advise where optimal levels need to be - as no thyroid hormone replacement works well until these core strength vitamins and minerals are up and maintained at optimal levels.
Is there a different doctor at this surgery who might be more pro-active in helping you ?
hi, they tested for celiacs and they said it was negative but I have been avoiding gluten for almost two years as I’ve seen a big improvement with how less puffy I am and it improved my energy levels a little. I’m not strict some gluten will still be in my diet in very small doses. I have been looking at the autoimmune diet and maybe thinking I should cut out diary and see if it also makes a difference. I feel like there are so many elements to this and it’s very overwhelming when you are exhausted already.
I will ask at the drs about seeing another practitioner, they are really quite unhelpful but I need to be a bit firmer I guess!
OK - I think you need to be eating gluten for the test to show positive - and most people feel better refraining from this and processed foods anyway - so anyway moving on -
B12 is much too low - you need to be a good 50% through any NHS ranges with some ranges being too wide to even be sensible -
I now maintain my ferritin at around 100 - folate around 20 - active B12 at around 125 ( serum B12 500++ ) and vitamin D at around 125.
You need to be eating a considerable amount of gluten if being tested for celiac disease. Also if you have low IgA then it is likely to show negative. There is a gene they can test for and you have celiac you need to have that gene so can be a helpful test for ruling things out.
There is a possibility that you are just remarkably good at creating TSH.
But another possibility is that you have some kind of antibodies against TSH that screw up normal testing and give results for TSH that are far higher than they should be.
I've never understood this problem, but helvella has written about it before. Hopefully he can respond on the subject.
Ooh, I just found helvella's article on the problem :
helvella - Factors that interfere with thyroid tests
A summary of factors known to interfere with thyroid tests.
Imagine a lot of snooker balls.
Take a sample of them. Select the red balls. Count the balls.
Now take those red balls and to each red ball, stick a white ball. And put them back where they came from.
Take another sample. Select the red balls. Count the balls.
You could see anything from just red balls to every red ball having a white ball stuck to it.
Count the balls. Red still count 1. But red with white stuck to it counts 2. Because you are counting balls - not just red balls. The more red balls that have white balls stuck to them, the bigger your count.
If the red balls are TSH, and the white balls are an antibody which can stick to TSH, that is what can happen.
Macro-TSH: A Diagnostic Challenge
What Is Known about This Topic?
Macro-TSH is a rare condition, which is caused by binding of TSH to other plasma proteins, most often immunoglobulins. This results in falsely elevated TSH measurement.
The biochemical profile mimics subclinical hypothyroidism and may lead to inappropriate LT4 treatment.
No immunoassay can reveal the presence of macro-TSH. Gel filtration chromatography is the state-of-the-art method for detection of macro-TSH.
ncbi.nlm.nih.gov/pmc/articl...
Hello, been a while but I had an appointment yesterday and I think they may be testing for this in my bloods as they mentioned the TSH being blocked and Heterophile antibodies
Sounds like someone is understanding and taking it seriously. I certainly hope so.
I would very much appreciate finding out how things go from here. 
Nobody has actually asked this question, so I'll ask it: How do you take your levo?
Do you take it on an empty stomach, two hours after food or one hour before it?
Do you take any supplements/medication at the same time as your levo?
I'm sure you know the right way to take it, but just checking.
Hi, yes I take it in the morning as soon as I wake up and don’t eat for two hours and only have water. It’s a pain but I’m strict about it. The drs always assume I’m not which is really frustrating
Ok that was going to be my first question
So you take levothyroxine correctly
Which brand of levothyroxine is it?
Do you always get same brand
How long have you been on 175mcg
Approximately how much do you weigh in kilo
Ft4 : 14.6
Ft3 : 4
please add ranges on Ft4 and Ft3
Was test early morning and last dose levothyroxine 24 hours before test
Was this test on 175mcg
guidelines is typically we need approximately 1.6mcg Levo per kilo of your weight per day
If you are taking significantly more than this it suggests malabsorption
Have you been tested for H Pylori or SIBO
Are you taking any other medications
When were vitamin D, folate, B12 and ferritin levels last tested
Exactly what vitamin supplements are you taking
I’m not strict some gluten will still be in my diet in very small doses. I have been looking at the autoimmune diet and maybe thinking I should cut out diary and see if it also makes a difference.
If you have gluten intolerance you do need to be absolutely strictly gluten free
Yes also worth trying dairy free
Lots of good dairy free alternatives available these days
TPOab: 410
TgAB: 320
TPO antibodies may slowly lower once TSH is lower and strictly GF and DF
TG antibodies tend to lower once TSH is below 1
firstly thankyou for helping I’m so overwhelmed by the help on here.
I popped my results in a calculator I found on here.
TSH 18.2 mIU/L (0.27 - 4.2) 456.2%
Free T4 (fT4) 14.6 pmol/L (12 - 22) 26.0%
Free T3 (fT3) 4 pmol/L (3.1 - 6.8) 24.3%
T4:T3 Ratio 3.650
Thyroglobulin Antbodies (TgAb) 321 IU/mL (≤ 115)
Thyroid Peroxidase Antibodies (TPO) 410 IU/mL (≤ 34)
C-Reactive Protein (CRP) 4 mg/L (0.0 - 9.0) 44.4%
Vitamin B12 53.1 nmol/L (37.5 - 188) 10.4%
Vitamin D 57.9 nmol/L (50 - 250) 3.9%
Ferritin 34.8 ug/L (10 - 291) 8.8%
The brand I’m given is accord and I was placed on 175mg when I had the above results, this was around 7 weeks ago and I have another blood test this Thursday to see if it’s made some difference. I think this blood test was in the afternoon. I’ve booked my test this Thursday for 9:15 am as I’ve read on here the morning is better and to not take meds or eat before hand.
My weight is around 14 Stone 2lbs so I make the 150mg should have been around the right dose? My drs won’t test for the antibodies so I’ll have to arrange that privately to get that checked again.
I’m not currently taking any supplements at all, so if anyone had a guidance on that I’ll welcome it! It’s more on what sort of dose per day I should be looking to purchase
I’m going to remove dairy from now and also go back to removing all gluten, gluten is easier dairy will be a challenge but worth it if I see improvements.
Once your on levothyroxine do you ever get to reduce your dose or once you have increased is that it for life?
I wish I had help with this years ago! X
So 14st 2lb = 90 kilo approx
90 kilo suggests likely daily dose Levo is approximately 144mcg
So yes ….looking like poor absorption issues
And your vitamin levels are dire ……hardly surprising with such low thyroid levels
Ferritin 34.8 ug/L (10 - 291) 8.8%
Ferritin is all but deficient
Are you vegetarian or vegan
Heavy periods?
Request GP do FULL iron panel test for anaemia
if they won’t …..test privately via Medichecks
cks.nice.org.uk/topics/anae...
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Stop iron supplements 5-7 days before testing
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
Posts discussing Three Arrows as very effective supplement
Great replies from @FallingInReverse
re ferritin and Three arrows
healthunlocked.com/thyroidu......
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great reply by FallingInReverse
healthunlocked.com/thyroidu...
Iron patches
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Iron deficiency without anaemia
healthunlocked.com/thyroidu...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and towards end how inflammation can also be an issue
healthunlocked.com/thyroidu...
Inflammation affecting ferritin
healthunlocked.com/thyroidu...
Updated reference ranges for top of ferritin range depending upon age
healthunlocked.com/thyroidu...
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
Only add one supplement at a time
Then wait at least 10-14 days to assess before adding another
Start with vitamin D
Vitamin D 57.9 nmol/L (50 - 250) 3.9%
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 with Hashimoto’s, improving to at least 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 when supplementing
Can test via NHS private testing service
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...
Recipe ideas
bbc.co.uk/food/articles/mag...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
no folate result
Vitamin B12 53.1 nmol/L (37.5 - 188) 10.4%
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
NICE guidelines on B12 and testing
healthunlocked.com/redirect...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
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...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
Post discussing different B complex
healthunlocked.com/thyroidu...
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 can be 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 folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
helvella.blogspot.com/p/hel...
Thankyou so so much I will read through all these links and info and get started on my journey.
I’m not vegetarian or vegan, I don’t eat masses of meat though
my diagnosis was off the back of an allergy test 8 years ago I was suffering with hives and no allergies flagged up so they checked my thyroid and noticed then that my levels were not as they should have been. Been struggling since then to really get any help from the gp. The last year I have had a period of extreme stress that I’ll never go through again but this has also been a large contributor to my health deteriorating and the return of the chronic hives. Stress levels are now reducing and I’m putting my all into getting this under control.
I’m so greatful for everyone’s advice it’s truly taken me back and such a relief to know it’s not me that’s going crazy, also has highlighted just how little GPs know or are willing to help which is so sad that people are left in this position
Hypothyroidism is not rare, there’s almost 2 million on levothyroxine in U.K.
9 out of 10 are female
It is however rarely well managed or well treated
This is by far the busiest forum on Healthunlocked
It’s wicked how patients are ignored or gaslit in to believing their symptoms are “imaginary “ or “all in their head”
Work your way through slowly improving vitamin supplements
Read posts …..and learn
Nothing happens quickly with hormones
But you should see steady improvement once vitamin levels are optimal
well I got my results back after being on a higher dose of 175mg and my results are worse! Surly it must be an absorption issue.. not looking forward to the drs opinion 😩
Your FT4 has increased. TSH may not necessarily drop with each dose raise as healing is not linear.
Get working on your vitamin levels and more will likely fall into place. You do need another dose raise though.
Still freezing cold on Levothyroxine will I need T3
Armour
Need some advise regarding Carbimazole, Graves disease
Complaining to Surgery manager
