Not sure if anyone on here can help me understand how my GP thinks? I had half my thyroid removed in 2021 due to a goitre on the background of Hashimotos. My TSH has been stubbornly been at the top end of the range and if FT4 is measured it is also just in range. I have been feeling awful though, exhausted, brain foggy etc. and it was getting worse. Last Nov my TSH once went a little bit over range and I got the GP to prescribe 25 microgram of Levothyroxine 5 days a week. At first I felt great, but my symptoms have come back and again I am feeling on a downward slope. I stopped eating gluten, which has really helped. My last blood test shows TSH at 3.49 (0.35 -4.95), and ferritin under range. So I know I need iron, but I would also like a higher dose in Levothyroxine, why are they so cautious? I am already on a tiny dose, at least that's how it seems to me. Is it a money thing? Or what do they think are the risk? I asked but couldn't get a response...
Undermedicated, why?: Not sure if anyone on here... - Thyroid UK
Undermedicated, why?
Quite simply your GP is ignorant as to how levothyroxine works
Levothyroxine doesn’t top up failing thyroid it replaces it
Standard starter dose levothyroxine is 50mcg unless over 65 years old
Dose is increased slowly upwards in 25mcg steps until TSH is ALWAYS below 2
Most people when adequately treated will have TSH around or below 1
See different GP
Request dose increase to 50mcg daily
Initially increase to 25mcg everyday waiting 4-6 weeks before increasing to 50mcg
Then you may need to increase initially to 37.5mcg (cutting extra 25mcg tablet in half…..or take 25mcg one day and 50mcg next day
Which brand of levothyroxine are you currently taking
Do you always get same brand at each prescription
Low vitamin level EXTREMELY common when under medicated for thyroid
When were vitamin D, folate and B12 last tested
What were iron and ferritin results
guidelines on dose levothyroxine by weight
Even if we frequently 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.
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
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...
Thank you so much for that information and the reassurance that this isn't me... I last had a lot of vit tests done in Dec vit d 75.9 (50-350), folate 3.1(3-20), B12 373 (180-640), at that time I also had an iron panel done and even though ferritin was still low I had 28 (8.8-27) on iron. Current ferritin at 10 (15-200). Looks like I have to change GPs...
so vitamin levels are low BECAUSE you’re not on high enough dose levothyroxine and therefore still hypothyroid
Low vitamin levels tend to lower TSH
vitamin D ok. Might be better around 100-125nmol
How much vitamin D are you taking
B12 and folate are both far too low
Important to maintain OPTIMAL vitamin levels by supplementing
Starting with B12
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
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...
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.
thyroidpharmacist.com/artic...
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 until over 500
definitely NOT a money thing .. packet of levo costs the NHS about £1... for all doses.
28 x 25mcg cost £1
28 x 50mcg cost £1
28 x 100 cost £1
if you need 75mcg ( 50's and 25's) then it cost them .... £2
(the exception is 12.5mcg tablets which for some stupid reason cost about £13 a packet.. so they usually prescribe 'half a 25mcg ' instead , or an extra '25mcg Every Other Day')
most of us only cost them about £24 a year , whatever dose we are on .
Wow - I had no idea! So this would be easy and cheap to fix... thank you for that insight! Mind boggling! 🤯
put these references in front of a GP , and ask for the recommendations in them to be followed (or to be given an explanation why they should not be in your case ) all recommend keeping TSH bwteen 0.4/ 0.5 and 2.0/2.5 in ALL patients on levo .
Some are taken directly from GP 'update ' sources , one was written specifically for GP update source by Specialist Registrars in Endocrinology and Cardiology , so there should be no argument about their validity .
healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range
The only concern GP's have about raising dose is if it takes TSH below range / or supresses it completely ... as they believe this holds increase risks for Atrial Fibrillation and Osteoporosis ....(that is a matter of opinion ~ the evidence doesn't actually show any increase in risk for patients on levo until their TSH goes lower than 0.04 ) ... but that's not a fight you need to have at this point , cross that bridge if/when you come to it .
For now ,just go with "i 'd like to trial a 50mcg dose to see what effect it has on my symptoms , fT4 ,and TSH "
They have no idea whether an increase dose will take your TSH under range / or your fT4 over range unless they try it . If TSH goes too low they can just reduce the dose a little , no harm done ........so insist that they either try it , or give you a good reason why not ~ they can't ~ because there isn't one.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This shoe size analogy may help you get you r head round why TSH 'in range' is not necessarily 'optimal'
healthunlocked.com/thyroidu... the-shoe-size-analogy.
Thank you so much for your advice. Just got a text from the GP telling me my TSH is fine and they will prescribe iron... Will go fighting with those links and see if I can get some response or change GP. Thank you so much for your help!
a 'one-liner' from serenfach to keep up your sleeve for next time a GP says 'your TSH is in range now ...'
"does your GP play Golf ? ... ask him if he'd be happy with his ball 'in range' ..... or if he'd prefer it in the Hole "
leaving this here so you can find it in future if you need it , ... the link to evidence that TSH between 0.04 -0.4 has no greater risks than TSH in range does: healthunlocked.com/thyroidu...
Iron
GP will frequently only prescribe low dose for short while
Any obvious reason for anaemia (apart from still being hypothyroid)
Eg vegetarian or vegan or heavy periods
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.
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
An article that explains why Low ferritin and low thyroid levels are often linked
preventmiscarriage.com/iron...
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...
Effective supplement
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...
Excellent article on iron and thyroid
cambridge.org/core/journals...
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...
Heme iron v non heme
hsph.harvard.edu/nutritions...
Ferritin over 100 to alleviate symptoms
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...
Ferritin range on Medichecks
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
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
Medichecks iron panel test
medichecks.com/products/iro...
Some members having good results with Three Arrows iron supplements
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Wow that's a lot to get my head around - thank you so much!
Last point
With Hashimoto’s are you on strictly gluten free diet
If not get GP to do coeliac blood test BEFORE considering trial on GF
nice.org.uk/guidance/ng20/c...
1.1 Recognition of coeliac disease
1.1.1
Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
Thank you SlowDragon, yes have been tested for coeliac but don't have the antibodies. My husband is coeliac, so yes I am on a strictly gf diet. I am a little more lax than him and will eat things that 'may contain traces of' which he wouldn't. From my personal experience it feels like gluten sets off the Hashimotos and without I feel a bit more even in myself.
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