I posted a few days ago about my doctor reducing my thyroxine from 100 mcg to 75 mcg. I managed to speak to another doctor who said to take 100, 100, 75 for a month and then 100, 75, 100 etc for a month and then test. Does this sound ok? Not sure what dose they’ll know to put me on though even if the results are all in range next time which is unlikely, not my TSH anyway.
Reducing thyroxine from 100 mcg to 75 mcg - Thyroid UK
Reducing thyroxine from 100 mcg to 75 mcg
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Tjqui00
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Hi again
so basically s/he's saying go down to 87.5mcg but do it very slowly by going to (somewhere between 87.5 and 100 ) for 4 wks first.
Well that's better than the original 'suggestion' of dropping you to 75
but 4 wks is too soon to retest, and as you currently feel well , i'd suggest sticking at 100/100/75 for AT LEAST 6 wks to properly see how you feel , then retest
and re-asses at that point before discussing any further reduction .
You cautiously trying a slightly lower dose to try and get your fT4 back in range is a reasonable idea .
Them lowering it so much you become unwell , to try and get TSH in range, is NOT.
I suggested to the doctor I just do the 100, 100 and 75 and she said she didn’t think it would make much difference and reduce my FT4 and FT3 enough, I did wonder after though how 4 weeks on different doses will work when you’re meant to have a blood test after 6-8 weeks on a change of dose.
Don’t think I’ll be able to ask again and it’s so difficult to get an appointment. Not sure what to do. I’m sure they’re getting fed up with me. If I stick to 100, 100, 75 and not do 100, 75 without saying and my results don’t change enough, they’ll think I need to go down to 75 every day.
when you go to test , just tell them what you decided to do and why .
it's your body .
Just tell the nurse when she takes the blood what I decided to do? Take it she’d put it on my notes. Probably then get questioned by the doctor why I didn’t do as they said. The first doctor I spoke to sounded like I had no choice but to do as he said and reduce to 75 every day. I’ve been told before that they’ll refuse to prescribe me the dosage I want.
May I ask why they're want to reduce your dose please, are you not feeling well on the 100mcg ?
I’m feeling fine. It’s because of my TSH being suppressed (which it has been for years even when FT3 and FT4 in range) and FT3 and FT4 now above range for the last year.
Can you post your results ? What time.of day did you have the blood tests done and did you remember not to take thyroid meds 24 hours before blood test ?? :/ The GP should not be reducing your thyroid meds by using the TSH as a guide. It should be solely based on how you feel. 
I had my test about 10 am and didn’t take my thyroxine before, last dose was 24 hours before. TSH <0.02, FT4 18.4 (range goes up to 14.4) FT3 6.6 (range goes up to 6). So I can understand why they want me to reduce but u don’t want to go right down to 75. I’ve already reduced from 125 in the last year or two.. What was strange was, when I reduced a bit last year, my FT4 went up.
SlowDragonAdministrator
strongly recommend you refuse to reduce dose levothyroxine UNTIL have had vitamin D, folate, B12 and ferritin levels tested
What vitamin supplements are you taking
Reducing dose levothyroxine will have very likely reduced vitamin levels
Low vitamin levels results in lower TSH
You have Hashimoto’s low vitamin levels extremely common
If GP won’t test ….test privately
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
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
No point testing until 8-12 weeks after any dose reduction
Do you always get same brand levothyroxine at each prescription
I’ve never had vitamin D tested. In may 2023 my serum Vitamin B12 was 331, serum folate level 12.3 (range 3-20), ferritin. 48.
My FT4 was 18.4 so above range which goes up to 14.4 and FT3 6.6 and range goes up to 6. TSH suppressed which it has been for 10 years. My FT4 started going above range a year ago, before that FT4 and FT3 were in range but TSH suppressed. I gradually when down from 125 mcg to 100 mcg. Made no difference to TSH. Many years ago I was on 150 mcg. This may have been too high for me.
Did you follow the suggested procedure for taking levo prior to testing ?
Are you supplementing B12 and VitD ? B12 would be good at 500+ - Ferritin at least mid-range also Folate. VitD can be tested on-line - finger prick test. Result good at 100+ to keep all those pesky bugs at bay !
Apologies ! Have not read your previous posts !
I always take not thyroxine the morning before my blood test but not the morning of the blood test. I take vitamin b12 and D sometimes but not every day.
So ferritin, B12 and folate all too low
First step ideally get retested now as likely even lower now
Or start working on improving
Definitely get vitamin D tested now
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement everyday
A week later also 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...
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...
I thought my folate was fine as it’s mid range.
I always make sure i get the same brand of thyroxine.
My sister was given 100 75 alternate days after being on 100 for many years and she’s doing really well on it.
What was the reason for her reducing from 100? I think I’ve only been on 100 for about 6 months, I was on 125 for years and then gradually reduced to 100.
Her blood test showed she was in range and her dr wanted to drop her down to 75 permanently but she wasn’t happy with that so they reached a compromise and us doing well…so I suppose it’s down to blood test and how a person feels.
Why did her doctor want to reduce her when her blood tests were in range? Was she having symptoms?
I’m not sure..I wonder if readings can be accurate but the patient feels better in a slightly higher does.
My initial blood test showed I was borderline and I did feel so tired but I wasn’t offered any meds till 8 months later when my blood test showed I really did need help .
SlowDragonAdministrator
vitamin D
How much vitamin D are you taking daily
Test twice yearly when supplementing
Can test via NHS private testing service
Aim to keep vitamin D at least over 80nmol
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 with Hashimoto’s, 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.
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 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
SlowDragonAdministrator
suggest you get full iron panel see where ferritin levels are now
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
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.
I had an iron panel test done shortly after the ferritin test as I was worried about my ferritin and those results were all good.
I’ve tried since not having cups of tea near meals. I need to remember to take vitamin C though.
I’ll probably have to pay privately to have ferritin and vitamins checked as my GP just says they’re normal.
I’ve managed to get through to doctors and the one I spoke to last week is calling me back today. Im going to ask to stay on 100,100, 75 for 2 months or at least 6 weeks and be tested, not to then change to 100, 75, 100.
So add separate B12 now
add separate vitamin B complex after a week
Significantly increase iron rich foods in your diet
retest thyroid and vitamin levels privately in 6-8 weeks
Can you take biotin when you’re on thyroxine?
Yes but you must always stop any supplements that contain biotin 5-7 days before all blood tests as biotin is used by many labs in blood testing equipment
Taking biotin supplements can falsely affect test results
The doctor is there to advise, not dictate.
SlowDragonAdministrator
Looking at previous posts
You have Hashimoto’s, as confirmed by high thyroid antibodies
Are you on gluten free or dairy free diet
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
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
nice.org.uk/guidance/ng20/c...
Or buy a test online, about £20
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...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/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
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Post discussing gluten
healthunlocked.com/thyroidu...
I’m having vitamin D, folate, B12 and ferritin tested next Tuesday. I’ve currently got Covid, symptoms started Friday. Do you think that could affect my blood results next week?
Possibly
Have you done a Covid test
CRP may be raised
Yes, it was positive. Would it affect vitamin d, b12, folate and ferritin levels?
Might affect ferritin as this can rise when CRP (inflammation) is high
Wouldn’t probably affect vitamin D, folate or B12
My test was strong positive on Sunday and there’s a very faint line now. My blood test is in 6 days.
So don’t start B vitamins until AFTER blood test
All Patients with autoimmune thyroid disease should have vitamin D tested annually
pubmed.ncbi.nlm.nih.gov/286...
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
pubmed.ncbi.nlm.nih.gov/273...
Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.
pubmed.ncbi.nlm.nih.gov/300...
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
ncbi.nlm.nih.gov/pmc/articl...
Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.
Same applies to low B12 - extremely common in hypothyroid patients
All patients who are hypothyroid should have B12 tested
ncbi.nlm.nih.gov/pubmed/186...
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
ncbi.nlm.nih.gov/pubmed/169...
Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia.
Folate supplements can help lower homocysteine
ncbi.nlm.nih.gov/pmc/articl...
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
Low ferritin frequent in hypothyroidism
healthunlocked.com/thyroidu...
I still don’t know whether to delay my blood test which is tomorrow. I still don’t feel 100% after having Covid. I don’t mind having it done, if the results will be accurate. Also, is it ok to take my thyroxine before the blood test for vitamins and ferritin?
If you can postpone easily, perhaps best to do so
Book early morning test
Personally I would delay Levo until after test in case they also test thyroid levels
ok, maybe I’ll make it next week. Worried the doctor my question why I didn’t have the blood test as she booked it in over the home. Don’t think they’ll be doing thyroid test.
Phone not home
Well having Covid is an absolutely totally valid excuse
helvellaAdministrator
If we assume a reduction is needed, it is just daft to get ahead of ourselves and put a second reduction in place already.
Do the first reduction. See how it goes. But no-one should assume a second reduction will be needed.
It is fine to consider how a second might be done. But you simply do not know if you will need it - yet. Any further steps should be contingent upon the effects of the first reduction.
Doctor called and could tell she was annoyed with me. She said doing 100, 100, 75 won’t make enough difference and I thought you wanted to know why your TSH is always suppressed, it’s because you need a bigger reduction or need to see if that’s what it is. She said she can’t stop me doing what I want with the dosage but basically it’s the wrong decision.
I mentioned the vitamins and she’s booked in to have them tested next week and the ferritin. She said we’re all a bit low in vitamin D. She said my B12 last year at 331 was normal.
It took ages for my TSH to catch up with my lowered dose and shift down, if only slightly. I don't think doctors realise this.
Karen
Do you mean for your TSH to rise when lowering your dose? How long did it take? I’ve been gradually reducing for a year from 125 to 100 and it’s always <0.02.
Sorry, yes, shift up, I meant. 🤦🏻♀️
I worry they’ll have me on the minimum dose if my TSH doesn’t raise. It has been suppressed for 10 years though.
You need to stand your ground as much as you can. Lots of doctors don't know much about thyroid problems and that TSH isn't a very sensitive test or way to check what dose you need. Karen
rise
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