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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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
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.
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
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.
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).
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
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
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
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
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
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
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
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.
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 😐
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.
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.
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