Medication reduced : Hi my GP recently wrote to... - Thyroid UK

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Medication reduced

Redroz1e profile image
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Hi my GP recently wrote to an endo concerned that my T3s were always low in range but my T4s were always above range and my TSH was always too low. She suggested liothyronine although my HA doesn’t prescribe it. The endo wrote back saying I was hyperthyroid and I needed to reduce my dose. Following a chat with my GP she suggested I try it as the endo had said to redo the bloods in 4 weeks when apparently it’s normally done in 8-12 weeks. So my dose was reduced from 150 mcg to 125 mcg and my bloods were done at the beginning of October.

TSH 0.03 to 0.47 (0.38-5.33)

T3 4.5 to 4.3 (3.8-6)

T4 16.8 to 10.5 (7.9-14.4)

Vitamin D 86.7 to 84.3 (50-150)

I take daily supplements including selenium and vitamin D.

I feel even more tired, I’m not sleeping well, I feel tearful for no reason, my tongue has swollen up etc etc.

I tried requesting an appointment with my GP last week and am still awaiting a response so any advice would be greatly appreciated.

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Redroz1e
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SlowDragon profile image
SlowDragonAdministrator

Free T4 (fT4) 10.5 pmol/L (7.9 - 14.4) 40.0%

Free T3 (fT3) 4.3 pmol/L (3.8 - 6) 22.7%

Not clear when you reduced dose

So how long have you bee on this dose ….don’t test until 8-12 weeks minimum after a dose REDUCTION

shows poor conversion ……

Do you always get same brand levothyroxine at each prescription

Getting T3 prescribed

which health ICB area are you in ?

Searchable by ICB area…if in England

openprescribing.net/analyse...

Is your hypothyroidism autoimmune

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease or if under medicated

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

VERY important to test TSH, Ft4 and Ft3 together

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

thyroiduk.org/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...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

Redroz1e profile image
Redroz1e in reply toSlowDragon

Hi SlowDragon,

I think my GP was getting at poor conversion and at trying to get liothyronine despite being in Hereford and Worcestershire ICB.

I have been on 150mcg for some time now and reduced down the beginning of September as advised.

I was told that the NHS only test for one of the antibodies and I had this test some years ago though it was within range. The doctor said it was probably hashimotos. I had a ultrasound years ago and was told that I had nodules on my thyroid

I get what I am given by the pharmacy so don’t always have the same brand.

I always have my bloods tested first thing without taking my medication or eating as I’ve already been advised on here.

I always have to ask for all of the thyroid tests to be done or TSH T 4 and T3 but this is not always done.

My vit D is in decline despite taking supplements daily and walking my dog for an hour each day.

My B12 was low a couple of years ago and I have been taking supplements since which has brought it back within range 411 (133-675)

My latest ferritin is 39 from 47 (11-306.8)

Folate 5 ug/L up from 4.7 ug/L (3.10-19.9)

I have always avoided the private tests due to the cost and fear of being unable to get enough blood for the test to be carried out.

Hopefully I have answered all your points.

SlowDragon profile image
SlowDragonAdministrator in reply toRedroz1e

I was told that the NHS only test for one of the antibodies and I had this test some years ago though it was within range. The doctor said it was probably hashimotos. I had a ultrasound years ago and was told that I had nodules on my thyroid

yes…NHS only test TG antibodies if TPO are high

You would need to test privately

I get what I am given by the pharmacy so don’t always have the same brand.

If you notice a different effects of changing dose….then work out which suits you best and request GP specify that brand on all future prescriptions as per Government guidelines

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

I always have my bloods tested first thing without taking my medication or eating as I’ve already been advised on here.

Good

I always have to ask for all of the thyroid tests to be done or TSH T 4 and T3 but this is not always done.

Increasingly rare to even get Ft4 tested on NHS and extremely rare to get Ft3 tested ……even when prescribed T3 on NHS (madness)

You will need to test privately

My vit D is in decline despite taking supplements daily and walking my dog for an hour each day.

so you need to increase your dose of vitamin D

How much vitamin D are you taking

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 when supplementing

Can test via NHS private testing service

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.

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

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator in reply toRedroz1e

I have always avoided the private tests due to the cost and fear of being unable to get enough blood for the test to be carried out.

Testing options and includes money off codes for private testing

thyroiduk.org/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...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

SlowDragon profile image
SlowDragonAdministrator in reply toRedroz1e

my GP was getting at poor conversion and at trying to get liothyronine despite being in Hereford and Worcestershire ICB.

openprescribing.net/analyse...

1,677 prescriptions for T3 in Worcestershire and Herefordshire ICB in last year

8th highest ICB in England

So it is perfectly possible to get T3 prescription

But first step

Get all four vitamins to GOOD levels by supplements

Retest FULL thyroid and vitamin levels

Then see if conversion has improved

If you have Hashimoto’s it’s always worth trying strictly gluten free diet

And a few months later dairy free diet

If Ft3 remains significantly lower than Ft4 …..once Ft4 back up around 70% ….with optimal vitamin levels

Then is time to go see THYROID specialist endocrinologist and take along full private test results to back up your request

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS

thyroiduk.org/contact-us/ge...

SlowDragon profile image
SlowDragonAdministrator

My B12 was low a couple of years ago and I have been taking supplements since which has brought it back within range 411 (133-675)

My latest ferritin is 39 from 47 (11-306.8)

Folate 5 ug/L up from 4.7 ug/L (3.10-19.9)

These are all too low

Indicative of low thyroid levels and all three need working on

B vitamins

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...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

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 and may need separate methyl folate couple times a week

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 5-7 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

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Ferritin

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

If taking any iron supplements stop 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

dailyiron.net

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.

Redroz1e profile image
Redroz1e in reply toSlowDragon

Thank you SlowDragon lots to think about and try to digest with my thyroid brain!

I will bear in mind the brand of levo for the future to see if I notice any changes in symptoms when the brand has been changed.

I have been self supplementing vitamin D for several years now as I understand it is supposed to improve your immune system which is something I think I need - I take 4000IU per day.

With regard to the B12 supplements - the doctor at the time told me to get Cyanocobalamin which is what I have been taking but I see there are conflicting reports online as to which type is the best. I also take daily PPIs due to a hiatus hernia - could this be affecting things?

Supplements are so expensive having to buy more is a worry with my husband retiring next month 😐

SlowDragon profile image
SlowDragonAdministrator in reply toRedroz1e

I also take daily PPIs due to a hiatus hernia - could this be affecting things?

Yes definitely

Are you taking levothyroxine as far away as possible from PPI

Ppi like Omeprazole will lower vitamin levels, especially magnesium, B12 ….possibly iron

gov.uk/drug-safety-update/p...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

onlinelibrary.wiley.com/doi...

sciencedirect.com/science/a...

Redroz1e profile image
Redroz1e in reply toSlowDragon

I take my levothyroxine first thing and my esomeprazole at lunchtime and evening. This was changed from once daily lansoprazole following unexplained abdominal pain last year. During the tests they found an aneurism in my spleen which I had vascular surgery on.

I have now started magnesium and vitamin B supplements so hopefully will help to start to pick me up a little. I have a further appointment with my GP at the end of next week so will ask about the PPIs. She has said that she will go back to the endo to see what they think.

PS the second link on heartburn takes you to a reproductive rights page.

SlowDragon profile image
SlowDragonAdministrator in reply toRedroz1e

PS the second link on heartburn takes you to a reproductive rights page.

How odd …..I have removed the link

SlowDragon profile image
SlowDragonAdministrator in reply toRedroz1e

Here’s a similar link to replace odd one

webmd.com/diet/vitamin-b12-...

Medication interactions

Taking certain medicines can interfere with the absorption of vitamin B12. These include:

Some heartburn medicines like proton pump inhibitors such as esomeprazole (Nexium), lansoprazole (Prevacid), omeprazole (Prilosec OTC), pantoprazole (Protonix), and rabeprazole (Aciphex)

H2 blockers such as famotidine (Pepcid AC)

Metformin (Glucophage), taken for diabetes

Colchicine, taken for gout

Some chemotherapy drugs, especially methotrexate

Other reasons for vitamin B12 deficiency

With age, it can become harder to absorb this vitamin. Many people over 50 don't make enough hydrochloric acid in their stomachs to absorb B12 from foods, though they can absorb it from supplements.

serenfach profile image
serenfach

Your Endo looked at the TSH and nothing else. I hope he gets worms and piles...

Jazzw profile image
Jazzw in reply toserenfach

Certainly didn’t deserve the title “endocrinologist”.

I expect their name badge wasn’t big enough to accommodate “Total Waste of Space”.

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